Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Sharmin on October 04, 2008, 04:15:15 AM
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Hey Umair, our nice friend,
haven't heard from you in a few days. Hope you're doing well:)
Sharmin
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No sharmin, i have been wondering the same thing.. havent seen him online on msn either.. the last I talked to him was on eid day.. he was getting ready to go to another visit to his relatives... that was last wednesday..
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Hey Umair
Hope you enjoyed the eid holidays, come back soon :hugfriend
manal
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May be he is busy with eid celebrations and gatherings.
Zaini.
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Hi to All ,
sorry for being away to the all of you and thank you for have a notice of my absence .. i m a regular internet user . i cant stay that much away to it without a reason ...i m going to mention here what happened to me ....
on firts eid day ( it was wednesday oct 01 ) after Eid prayer when we came back to home . i was feeling a little pain in my stomach .. but it wasn't irritating ... when i chatted to Maako and before dinner it was pretty sustainable .... but in night it became to severe pain and vomitings bcoze of pain i cant sleep whole night ( and my bro and father as welll as he was trying to convice me to go to hospital and i was worried about the time bcoze it happen 2am - 3,30am) about 4am my father refused my concerns about the time and took me to nearest hospital .. doctor advised me an two injection one was Rizek and another was zentec ( i think ) and some mediicne for the stomach and vomiting .... we came back and then i had a sound sleep all the 2nd day of Eid ... on 2nd day , our and other uncles were invited on an uncle's home for whole day , i didn't attend the day session but attended the dinner session ( only showed my presence there otherwise i wasn't able to eat anything ) .... i missed all my medicine bcoze the sleep and won't to start medicine in night ... night between the thursday and friday again severe pain my uncle , bro , and father took me to that hospital again ... again two injections and medicines ... again a whole day sleep but this time they specialy awake me several times to take medicines ... friday was a little and a little pain ... and then saturday is a little normal .. i have not sleepy that much and a little active as well ... so i thougt i have to inform you people would be worried about me ... when i visited the site i saw this post ..... and replying... its late night but i m not feeling sleepy bcozee of the sleep i had in the day .... hope you all r also fine ..
thank you for remembering me and noticing my absence ...
Best Regards
Take Care
UMAIR
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Umair,
Sorry to know that you were not feeling well. Please rest up and feel better soon. Did the doctor's tell you why you were feeling so miserable? Hopefully it will pass soon, take care of yourself.
Glad to have you back bro:)
Sharmin
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Hi Sharmin ,
i have a history of stomach pain ... and this Ramadan i were a little careless in diet i ate rolls and fried things very freely thats why it struck's me back again ... now i m feeling good ... doctor told me that it is severe Acidity .... well its past's reality now .. i m fine soo everything is fine :thumbsup ... i m fine and feeling good now ...
UMAIR
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Its good to know ure back after an ordeal, fine and feeling good:D missed u around here:)\
Tc always
Maako
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Happy you are okay now :hugfriend :hugfriend
manal
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Hi Manal & Maako ,
Thank you for the wishes and notcing my absence ...
and thank you for remembering me in your prayers ..
Best Regards
Take care
Umair
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Hi Umair
Good to know that you feel better. You should take curd for your stomach.
I have also heard that there is a particular bacteria which causes stomach aches.
Take care
Jade
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Hi jade ,
i dont know wat was the reason behind my stomach pain , but the doctor to whom i consulted , was on night duty in hospital time was nearly 4;00 am i dont know about the doctor's profile and his carier profile. he told by seeing the colour of vomiting and the condition , according to him i was having Severe Acidity ...
aboout curd ; thank you buddy for the valuable sugestion .. i were only on milk in first then i turned onto Nestle's yogurt/curd then light meals like porridge with curd and then on routine meals .... now i m fine .. and back on routine life but carefull and taking curd with meal and cup of milk after meal ( milk , bcoze my uncle told me that , milk has the ability to controle the Acid which released by the liver, to digest the oily and spicy food ). i m experienced and it works as well ... Thank you Jade for the help ... please keep it up .. its feel realy good to have a caring reply like yours ... i m realy thankful of you .... May God Bless You buddy ! :ty ........
Best Regards
Take Care
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Umair,
Thanks buddy for attending to everyone while i worked on getting my internet up this morning:)
It is no wonder that we start to miss you as soon as you are away!
Way to go bud :thumbsup We are very lucky to have you!
Sharmin
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Hi Sis ,
Thanks buddy for attending to everyone while i worked on getting my internet up this morning
No Prob ... its O.K ..
hey Sis and all others please dont forget to say me " Bon Voyage " bcoze i m going to have Tx tommorow ... soo keep remember to say me " Bon Voyage " .... okiey ...
and i have to go for Tx 2 more times next week after this Tx ... soo keep saying me BON VOYAGE ...
... ... ... ... ... ... ... ...
... Best Regards ...
... Take Care ...
... Umair ...
: : : : : : : : : : : : : : : :
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Umm..Are you going to another country for transfusion? :rotfl :rotfl :rotfl
Sorry,just kidding :wink
Bon Voyage
Zaini.
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Hi Zaini sis,
Hahahahaha ....
dont need to say sorry ... its looks good to hear the commentts like that ...
Good News, My Thal center's Staff Bleeded 45 Donars in Today's Camp ....
:happydance :happydance :veil :happydance :veil :happydance :veil :whew :yahoo :happydance
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Bon Voyage!!!
Don't be gone long!
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Hey buddy,
I hope your absence means that you are getting treatment and the answers that you need. How is you hg lately? ferritin?
Come back soon:)
Sharmin
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I sent a text to him yesterday ,he replied "i am totally fine and will update on thal pal very soon".
Zaini.
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Hi Everyone ,
Zaini , is right ... soo here i m ....
Hey buddy,
I hope your absence means that you are getting treatment and the answers that you need. How is you hg lately? ferritin?
Come back soon:)
i haven't got answers of my questions , as my CBC and LFT report is still un-answed .. i m looking for the answer ... i want to visit my doc soon but she is busy in thal conference karachi .. soo unable to visit meet her .. as my reports dae was 30 october and she went to karachi on 2nd of november ... soo still looking for the answers .. no new treatment , nothing new , i were upset a little bad to the past few days , bcoze of health but the feeling tired ( emotionaly feeling tired ) ...
yesterday ( on 4th november tuesday ) i went for Tx and my Pre-Tx Hg was 8.3 ( as i thought ) ....
people at thal center said to me that i was looking realy shiny ( for the first time they saw me in White Shalwaar Kameez ) ... when i woke up today a bad news was waiting for me , i got Stomach ache oce again , in my last visit i told my doc abt my stomach ache , she told that it could be a side-efect of the medicine she prescripted to me for Liver ( bilirubin ) ... she said , that medicine is working and controling my high levels of bilirubin then i should have to cary for a little more , i have taken that medicine nearly two months and its a course of 3 months .. but my Bilirubin is in normal ranges now as you may see in my LFT report .. soo lets see wat she will do next with the medicine and treatment ....
hey i want to share a super fact :
when i got stomac ache ,
1) undisclosed on 22 september ( dont want to disclose the reason )
2) on Eid Day when all of my family member was saying that umair you are looking good in this and healthy .
3) unknown reason ,
4) when people at my thal center said that , my health is improved and i m looking good in this dress ..
when-ever someone said that i m looking good , hhahahhhaha
Chelation is on , and taking medicines for my stomach which my doc prescripted in advance .
i think its enough for this time .... coze its too long na ??...
thanx for remembering me & noticing my absence ....
Best Regards
Take Care
Umair
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Umair,
How long had it been since your last transfusion? It would be nice to see you hg a little higher before transfusions.
I am glad that your bilirubin is down and that you are chelating so well.
I hope that your stomach is feeling better.
Sharmin
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Hi Sharmin ,
thanx for the encouragement , i m feeling good after taking medicine for stomach ..
it is 14 days gap between last and and 2nd last Tx ...
here is the link of my latest lft and cbc reports in which you can see and compare the bilirubin ,
http://www.thalassemiapatientsandfriends.com/index.php?topic=1870.msg20173#new
Umair
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Umair,
Your hg should not be dropping that much in such a short period of time. You should be transfused at a hg of 9.5 or above, 14 - 16cc/kg every 4 weeks. If your requirement is a little more than maybe every 3 weeks, but your pretx hg should be at least in the 90s. You must make sure that your blood is being properly match and you must get a coombs test done - something is causing too much hemolysis. With this rate of transfusion the chelation has too much incoming iron that it does not get a chance to reduce iron already stored in the body.
This time, you should request to do your transfusion in a week (or whenever you feel that your hg will be in the 95 range) and then be transfused 14 - 16 cc/kg. If it does not last you at least three weeks you should investigate why.
Sharmin
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Hi Sis,
i will definately plan a Tx within a week .. after that i will ask my doctor to investigate the reason thatwhy the gap is too short .. and i will ask my thal center's doc as well wat is the volume of the blood they gave me .. good thing is they r doing a good job for me , Lab incharge always try to give me fresh blood and i never saw that my blood is more than 3-4 days old , .. i will try my best to find out the reason ... thanx for the suggestion sis . i realy need that .. i wanted to kow that wat is the needed volume for me .
Umair
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A good volume for you is (14 - 16 cc/kg) - 560 cc to 640 cc on the lower end. If you are needing more blood (20cc/kg) then the volume for you would be 800cc.
I calculated these values based on your weight of 40kg.
Sharmin
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hey sis,
a good news, if i havn't mentioned about it before .. that is . as i thought 39kg was bcoze of weighing machine's fault or something else , my weight is again 43kg ..
(14 - 16 cc/kg) - 688cc to 602cc on the lower end .. (20cc/kg) 860cc ... i m right na .???
thanx for helping me to understand these calculations ... i will ask to my doctors about it...
Umair
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Umair,
That is correct:)
Sharmin
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Umair,
Oakland has advised me that the goal of each transfusion is to increase hemoglobin by 35-45 g/L and this is usually achieved by transfusing the patient at hg 10.0 - a volume of 14-16cc/kg. In your case, if you were transfused at a hg of 10.0 in a week then the volume of blood that you should receive would be between 602 to 688cc/kg.
Please ask your doctor for the Coombs Test also known as the antiglobulin test, the information obtained from this test will be very helpful in determining what is causing your increased transfusion frequency. The information will also be helpful in the crossmatch process so that the transfusions will last longer. I am glad that you are getting fresh blood as this is one factor in determining how long your tx will last. I also hope that you will ask your doctor to take a blood sample and have it sent to either UK, US or Canada (Toronto) so that you can have genotyping done - this is the one way to BEST match your blood. Your friend at the blood bank may now how and where to send your blood. I know that the blood should not be spun after it is drawn when it is sent for this test - but I am sure that the lab where the testing is done will inform you on how it should be prepared for testing.
Please Umair, do not delay in taking these steps. Make sure that you are getting the right volume of blood, get the Coombs test done and if at all possible get the genotyping done.
I am so glad that you are chelating, regardless of tx frequency the more you chelate the better.
Take care,
Sharmin
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Hi Sis ,
Thank you for helping alot , you are soo kind and helping . i m making notes in light of the information yo provided , i will ask to my doctor investigate my case completely , and to advice treatments if needed ... i will ask to my thal center's staff that give me the details of that you mentioned ( blood volume , and sending the sample and procedure ) ...
] i will also provide them this info , and will ask to them abt their formula or calculation of setting the volume of blood ....
Thanx again sis for helping me alot ... i m realy thankful of you ..
Take Care
Umair
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Umair,
Also try getting a slow rate transfusion. I don't know what rate you are usually transfused, but it may be worthwhile spreading your transfusion over a longer period. If you get two units, it may not hurt to do them over two days one after the other. The slower you transfuse the longer the tx seems to last - even when transfusing the same volume. If there is some immune reaction going on, your body is less likely to react to the slow increase in red blood cells than a fast one, plus I think that less damage is done to the cells when they go through the line slower. After all, you want each transfusion to last as long as possible to keep your hg high and minimize the iron.
Sharmin
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Sharmin,
Whats the advisable duration of the blood transfusion? I mean the amount of hours for a 250ml packed cell.
\peace/
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Sahil,
I am a lot more familiar with children's transfusions, but I can find out for you. An adult can be transfused faster than a child, especially if you don't have increased hemolysis.
250ml is a very small transfusion - how frequently do you transfuse? Or do you get multiples of the 250ml packed cell units? I think that it is better for everyone to get a slower transfusion - as long as you don't hang a bag for more than 4 hours.
I will get back to you on that,
Sharmin
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Sharmin,
I transfuse every fortnight, with one packed cell of 250ml. Total amount of blood is 250ml. And the transfusion goes on for about 4 hours.
\peace/
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Hi Sis,
Gap between the transfusions = 14 days ( exactly 2 weeks)
duration of Transfusion = 02:45 (2hours 45mnutes) to 03:30 (3hours 30 minutes)
only one unit for one time =
dont know abt the volume i will ask abt that to Lab incharge of my thal center ....
i still have to ask to my doctor abt the all other tests (Coombs test , Hemolysis , Anitbodies and other test you mentioned) ... looking for your reply ....
Umair
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Umair,
If you are receiving one unit, your transfusion frequency does not sound like a lot. Unit sizes often vary - here a unit can contain anywhere from 250mL to almost 400mL. If you receive one unit most likely in 2 weeks your hg will return to your pretransfusion hg. Therefore, it is best to get one transfusion on a one week interval (at about 100) - and then return to your bi weekly schedule so that your pretransfusion hg remains 95 - 100. Don't let it drop below that, there will be too much stress on your organs (especially the heart) and your bones.
Let me know when you start on the other tests.
Sharmin
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Hi Sharmin ,
i m planing to have a Tx on this wednseday , here is my plan for this week .
Today , Ultra sound of liver and CBC ( prescripted by my doctor )
Tommorow , Tx an i will ask to thal center's doctor and to the lab incharge of my thal center at the volume of the blood and wat they think , wat should b the volume for me .. to check them :wink :grin ... after gathering all info i will post that info here.. and chelation ....
Friday , after collecting all the reports i will visit my doc to discuss those reports to her as well , i will inform you as well .. i will ask her to prescrib coom test and to use all available facilities to complete diagnose my case and to completely invsetigate my case as well .... then i will inform you as well ...
sooo .... it is the my plan for this week, i hope, i willl successfuly comply on it ...
Take Care
Umair
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Good luck Umair, we'll be waiting for your update
manal
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Umair,
I am glad that you are getting the information you need:)
Sharmin
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Hi Buddies ,
Good news ..... i m going to attend a wedding of my cousin , soo ....
Take Care
Umair
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Congratulations Umair. Wish the bride and the groom a happy life
manal
:congrats :congrats :congrats :congrats :congrats :congrats :congrats
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Hi Manal ,
Thanks for the wishes for my cousins ... i wished them , and i enjoyed the ceremoy as well .. thanx for good wishes Sis ...
Umair
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Umair buddy where are you. Haven't seen you for 4 days now. I hope you are ok
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Tariq,
I was thinking the same thing - I sent a PM a little while ago hoping to hear from him. I hope that he is okay too.
BTW, how is your ferritin Tariq?
Sharmin
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Sharmin,
I'll be checking my ferritin next week, lets hope for the best.
Its been above 3 months now since i intensified my chelation. I am hopeful for a noticeable drop in ferritin InshaAllah.
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Tariq,
Please share what you learn when you have your results. In three months I know that you will have made significant progress.
Sharmin
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Hi Tariq n Sharmin ,
Sorry buddies for being absent for that long time , and to make you all worried . actuly i was having the same stomach ache , which made me trooubling time-to-time to last 4 or 5 months .
it looks like medicine's side-effect but i m sure ( mujhey nazar lag jati hai :wink ). as i mentioned a few weeks ago abt it :D ... this time one of my relative said , you're shining , is it bcoze of decrease of iron , i replied yes , relative said you are looking quit well in both ways health wise and complexion wise , looking gr8 . "aur ho gaya :D " i mean and then within hours ........ khair... now i m feelin very well .. FIT n FINE , .... i want to inform you people but didn't inform bcoze if lil weakness bcoze i didn't eat or drink for a whole day , in mean-time i took Motilium ( to stop vomiting ) but Motilium came out with puke , i tried to drink water but same happened to water as well ,,, but previous experience work's for me , next day i took only medicine and then after two doses of medicines then i started with Mom's Made super Delicious Dal'yah :P .... aahh that relieve's ... hope you all r enjoying winter , i m also enjoying winter and wearing pump bcoze i have to controle iron and start Asunra within the end of this month .... ...
@ Tariq n SharminThanx for noticing my absence , and remembering me in your busy lives .. Thanx Alot buddies ...
Best Regards
Take Care
Umair
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Umair,
Hope you have fully recovered from that pain, you are in my prayers.
Tc
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Hi Umair,
I hope you feel totally fine again. I have had exactly the same what you described (over a few months) .
What is magic of your mother's Delicious Dal'yah? :)
Best wishes Dore
p.s. how's your fe?
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Hope you feel much better now Umair :hugfriend
manal
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DORE & MANAL ,
Yeah, i m feeling much better now , you may see the impact of my good health on the boards .. magic of my mother's delicous dal'yah is ,,,,, i think sharmin sis could explain it well sharmin sis whree r u ??? ,... thank you for your concerns and your regards ...
take care
Umair
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Hi Dore,
Dalyah is what we call porridge in urdu,now you can explain the recipie to dore umair,or PM it to me i'll translate :) .
Zaini.
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Thats gr8 Zaini ,
i wil send you it in a PM realy soon (within hours) so you can translate and post that here on thalpal forum .. thanx again sis....
Umair
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Oki, I love cooking, you see... :smiley
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are u guys taking name of thing called daliya :rolleyes
i personaly dont like it because once i went to a doctor who claimed that he can cure me and he told me to take only dilya and sago dana for whole month
at start it was really delicuos but with every new day it got worse as the only thing i could ate was dilya :wah
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Hey Ahmed ,
yes we r talking about dalyah , i like it very much yaar ... you know sometime i eat's dalyah as a sweet dish hummmy yummmy ..... i was only on dalyah for couple of week when my stomach ache was disturbing me , i was unable to digest anything but the dalyah only .... i will send the dalyah recipe to zaini to translate and then upload here on forum ASAP ... i hope you will try that recipe and like .... soo stay in-touch :thumbsup
Best regards
Take ccare
Umair
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once i went to a doctor who claimed that he can cure me and he told me to take only dilya and sago dana for whole month
I bet that doctor runs a grocery store as side business :rofl
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LOL Tariq Bhai ,
Ahmed when doctor
i went to a doctor who claimed that he can cure me and he told me to take only dilya and sago dana for whole month
when doctor was prescripting you this , is he mentioned any grocery store to buy dalya and sago dana from ??.....
Ahmed ,
Well its not 1st time i heard any doctor is saying to eat only dalya or sago dana , a few weks ago , at my thal center i met to patient who was soo weak , when staff asked abt the reason of his weakness, he saidd the same you mentioned above his doctor said to him to not to transfuse untill it bcome's to necessory . he was looking very weak ..
Umair
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Umair,
How was your latest ferritin test? Did they give you the results yet?
Sharmin
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Sharmin,
hummm i m expecting for good results , and tommorow is the resulting date .
Hoping for the super duper Results :pray ....
Umair
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:pray :pray :pray
Zaini.
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Umair,
I am praying that your ferritin has declined significantly. Please post a soon as you get your results.
Sharmin
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@ Zaini ,
Thank you very much for your prayers i realy need them , please keep praying... Thanx Alot ....
@ Sharmin ,
i didn't got results yet , tommorow i m going for Ulra Sound of Liver to measure the size of liver and , i will collect all my reports Tommorow ... i will post all my reports qst of the forum ..
Thank you very much Sharmin n Zaini ,
Best Regards
Take care
Umair
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I wanted to wish you good luck Umair. My fingers are crossed for you, if you do the same for my huge exam ;) .
I hope one day I will be able to see a good decreasing of my fe level. Oh well, it is time to catch some good sleep. Take care my nice friend :)
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Good luck Umair hope you get god news
Kathy
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Wish you the best for your exam Dore :hugfriend :thumbs
Zaini.
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Good luck on your exam Dore. Best of luck for your ferritin results Umair.
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Dore , Wis you all the best for your exms and may God bless you with everything that you needed ( your goals to achieve ) .. thanx alot for the wishing me :ty :thankyou :ty i got my Fe result today and i have posted that on the forum under the topic " especialy to Andy question abt chelation " here is the link below :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.60
Crossed Fingers for your exams :goodluck
Zaini, Kathy n Sharmin :
Thanx alot for the encouragement and wishing me , yeah , i got superb Fe reports please check that under the post i mentioned above .... :ty :thankyou2 :ty
Take Care
Umair
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Thank you very much for the wishes. My idea was that I should start studying for this exam around Christmas. I think you all know that I have been ill, so I had only three days to lear (tuesday, wednesday and today). It is public law; criminal law plus administrative law. The amount is like the mt. Everest. Actually, it is a redo. Due this anemia I can only do 60% each year. So this year I do 40% of year 1 and 20% of year 2. This exam contains theory of year 1 and year 2.... Btw I had a 5.4 (5 out of 10) and i recently found out that I had one of the highest marks.... :rolleyes In others word: it is time to have an other date with the books and get again one of the highest marks of year 2, but then above the '6' ;)
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Dore,
(http://www.comments.zingerbugimages.com/congratulations/congratulations_blue_rainbow.gif)
I am very proud of you for attaining one of the highest mark in your studies!! I wish you success in your future studies!!
Sharmin
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Hey that calls for a celebration :biggrin
(http://imagecache2.allposters.com/images/pic/MCG/FPFD1539~Mickey-and-Pluto-a-Celebration-with-Friends-Posters.jpg)
Congrats Dore :hugfriend
Zaini.
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I am sorry for my messy message. I didnt do the redo yet. The 5.4 is a negative mark, tomorrow I will give everything of myself to get atleast a '5.5'. My target was a '7', but I still forgot a lot. Generally, I got all positive marks and most are sevens :). Though I prefer eights :biggrin
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Congrats Dore ,
i hope you will get achieve your targets and marks that you have settled for you ... take care and keep the it upp .. :congrats
Umair
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Hi All ,
yesterdday i had transfussion , my Hg was 9.0 and i got the bag which was collect only 2 days ago to my transfsion date :yay ( it is wat called, approach , just kidding ) everyone at the center got tha blood bags of the same date , they used to treat 25-35 patients daily soo they plan blood camps very often ....
hey hey ... . something happened there at my thal center my doctor and the admin of thal center recognize's my compliance with chelation and they recognize mydetermination .... admin said ; i want to give him a medal for his achievement and doctor said : yeah he is doing very well and he is taaking well care of him and mainting his Hg as well ..... i know that he is not gonna give me medal ;) :wink but its alot for me that he recognized my achievement and asked about my treatment plan . guuess wat happened then ???. ... he gave my example to many a patientn who wasn't taking good care of himself .... well then i took the class of his ( that patient ) as welll bcoze he was my friend :d ) and gave a lectures to him ...
i said , it is better to controle your iron now than after getting its side-effects like Diabetes , he said : but its panfull , i replied budy its less painfull than having insulin before every meal ( well i m not on this kind of insulin , i m on twice a day like insulin :grin ) , isn't it .. and he got that :D ... wOw .....
after transfusion when i came back to home i had a plan to have chelation with pump , but i was feeling very tired :( ..... soo half heartedly i made injections and wear the pump eyaakh i stil dont want it but its okiey .... now its hour no#17 that mean's 23 hours left ... ... i hope you all r okiey ...
another thing that i want to share with you :
my thal center's doc prescripted my friend vit-c ( CaC 1000 i think zaini and tariq know abt this spplement ) , yester when i went for Tx i wanted to talk about his to my doctor but unfortunately i didn't bcoze after checking all the patients i dont know when she went to office cum staff room .. soo when i was coming bakc to home i met to senior most staff and talked about that ; i said : doctor has prescripted my friend Vit-c and his feritin is quit high at this stage , i said that , she prescripted vit-c while he is having chelation with pump that means she prescripted him for chelation purpose , and serum ferritin is showing that his iron level in his blood stream that is high enough then wat is the need to give him vit-c while there is alot of iron already in his blood stream , i said it culd damge his heart soo plz contact him and stop him ,.. i said i can call and stop him but he wil only relie on doctor's prescription soo it will b better if doctor stop's him , she said you're right i will talk to doctor ....
thats all wat happened there yesterday ... quit busy Tx day .... shuhhhh
Best Regards
Take Care
Umair
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Hahaha, Doctor Umair :thumbs
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Hi dore ,
i know you're kidding bcoze you know that , i m not a doctor , i was just sharing my point of view about vit-c and chelation .... anywayz thanx to this site that opened my brain to think like this and to investigate about my treatment plans and mediicines ... Thanx Andy and all other senior members .... thanx for opeening my brain without a bottle opener :grin .....
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thanx for opeening my brain without a bottle opener
Umair,since you didn't have a lid,it wasn't necessary to use a bottle opener :rotfl :rotfl you were intelligent enough to catch everything :) .
Zaini.
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Hi dore ,
i know you're kidding bcoze you know that , i m not a doctor , i was just sharing my point of view about vit-c and chelation .... anywayz thanx to this site that opened my brain to think like this and to investigate about my treatment plans and mediicines ... Thanx Andy and all other senior members .... thanx for opeening my brain without a bottle opener :grin .....
Honestly, awareness and knowledge are the key. Dont be shy.
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There R many similarties Btwen U & pepsi U both R Cool,Sweet,everybody like U & most important Similarity, U both are Dhakan (Bottle Cap) at mind
then why my buddy sent me this SMS ???... :grin i think he know's me better hehhehehhe .... anyways thanx alot for recognizig me as an inteligent person , i wa just checking it wat people think's abt me :wink ..
Bad News :
Stomach ache is back , i m back on dalyah , vomiting and stomach aches are now my friend and often come to meet me and we are enjoying the dalyah alot ..... . i m feeling fine now but last night was a bad experience i was wearing pump and needle at abdomin and then i got stomach ache i won't to puke while having needle in abdomin , i didn't sleep last night and when then i weard off the pump i ran to vomit today at 5 o clock and then i feel very relaxed ... now my mom is making dalyah for me . :P ops i m sorry to share the recipe , INSHA-ALLAH tonight i will share that ....
Take care
UMair
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Umair,
I am sorry to hear that you are having stomach problems again. Do you know if you have an intolerance to certain types of food that brings about these episodes? Please keep us posted.
Good job on inspiring others and keeping them informed. Trust me, our members sometimes know more about thalassemia than most doctors. You can make a big difference for so many people with your knowledge - and you have :thumbs
Sharmin
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Umair,
What is the reason of your so frequent stomach disorder? You should investigate that,dalyah is indeed a good thing but you'll loose weight if you'll keep getting these stomach upsets,and i know you are not a heavy weight champion to begin with,so take care.
Zaini.
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Wish you a speedy recovery Umair :hugfriend
manal
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Hope you are doing fine Umair,please keep in touch.
Zaini.
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HI Umair,
This morning I had to think about you. I am a bit worried that you did not give us an update. I hope all is well :getwell
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Umair,
I am hoping that you are well and waiting for you updates and jokes buddy,
Sharmin
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Umair,
Still waiting to hear from you. I hope that your stomach is all better - I was really hoping to hear that you are feeling well before I leave. Please write soon.
Sharmin
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I am worried about him too Sharmin, i have PM him too and there is no reply, anybody knows anything about him????
manal
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I have sent sms on his cell,waiting for reply :-\ .
Zaini.
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Thanks Zaini, please update us :hugfriend
manal
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I am really glad to hear that someone has his phone number. I hope to hear from him soon. I am a bit worried. :-\
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Hi Everyone,
i called Umair,at first no one recieved,but then he called me back and told me that he was very sick for about a week,was unable to eat due to stomach ache,and is feeling very weak,today he got his transfusion and will go for check up tomorrow.He wasn't answering because he was asleep,and he really sound very sleepy and tired.
Get well soon Umair.
Zaini.
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Thanks Zaini.
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Thank you Zaini.
Umair, get well soon bud we miss you :hugfriend
Sharmin
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Thank you for the update!
Get well soon Umair. Do you need a nice story? Today I behave like a frog. I was wearing partly green shoes, green socks, green (warm) pants, green jacket, grey shirt with green flowers and a green hair pin. I hope you will be soon able to spring around like a frog too!!!
All the best wishes from the Netherlands,
Dore (le grenouille fou/the crazy frog)
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Umair, get well soon buddy, missing you here :pray
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Umair, wish you a speedy recovery. Thanks Zaini, it is really important to exchange phone numbers
manal
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You are welcome,
I asked for his number after Sajid left us,now when ever he doesn't come online for a few days,i can at least send him a sms to know that he is fine.
Zaini.
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back and told me that he was very sick for about a week,was unable to eat due to stomach ache,and is feeling very weak,today he got his transfusion and will go for check up tomorrow.He wasn't answering because he was asleep,and he really sound very sleepy and tired
Hi buddies ,
umair is back . all wat Zaini sis mentioned is absolutely right. i was ssick , was unable to eat ( even dalya aas well) Due to stomach ache,i was feeling very weak,bcoze fri-mon i was only on water nothing else , today(wednesday) my uncle said he is vey weak soo bfore goin to lahore i think he should have a TX, soo i got transfusion and will go for check up tomorrow (thursday is canclled now of Friday.). these 2 days sat-monday i was unable drink even water , i dont know why , when-ever i drank water in those 2 day i vomited . stiuation was very dis-hearting then one of of old child specialist who is my doctor to my childhood he ccame back after atten a conference . he told me that its sotamach and he gave me only a syrup and a tab shuh......( i felt free from the injectins of the doctor i was been treated before this .... ) stilll feeli weaknes .... i willl update u al more if something came in my mind , i think its enough for now ..... sorry for not replying you people for a long time and sorry for being disapeared for a long time without notifying and for eing a a reason to make you all worried....
Zaini, Manal , T @ r ! Q , Peartree Girl , Sharmin , Andy Thank you all for praying for me for thinking of and cocering for me . thanks alot . keep praying i need that bcoze i m having back to back probs something like if my health improve'' 40% to 70% then a bad path like stomach ache pull it aack 40% ..... i nneed the prayers of you all ....
Best Regards
Taker Care
Umair
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Welcome back Umair, i really wish all this will be over but again the reson for all this repeated stomache aches should be addressed and known. Please investigate the reason. As for now you are inmy prayers and keep us updated :hugfriend
manal
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Hey Umair,
I hope they will find out what is causing this problem. You are in my thoughts & my fingers and toes are crossed for you!
It sounds a bit like I had. Try to replace the water for (instant) veggies bouillon. :getwell :getwell :getwell
Dore
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Hi Manal & Peartreegirl ,
Thannk you for the prayers n the wishes, yes i m going for check-up today to talk abt n to find abt the reason of stomach aches. i will try my best to find out the reason this time ...
@ PeartreeGirll
boiled veges and even water dont stay's in my stoch whe pain starts , if i drink a glass of water during during the peak 1-2 of pain that come's out as vomiting , realy disturbing na ?? .... but thanx for the advise who knows upcoming advise is gona suit me ...
@ Manal
i will talk to my doctor that 1st solve this stomach ache so i can eat my favroute food and we will talk abt any other treatment .
Take Care
Umair
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Umair!!! Gone missing again ???
Zaini.
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Hi Zaini,
I was thinking the same thing. I hope that he is not sick again, his stomach has been causing him so much grief lately.
Post soon buddy, we are missing you,
Sharmin
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Post soon buddy, we are missing you,
:happyyes :happyyes :happyyes :happyyes :happyyes :happyyes
manal
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Hello everyone,
Tariq messaged Umair on his cell phone,Umair replied that he had malaria and he is recovering from it,but he is feeling very weak,can't sit for long,he is having difficulty breathing and chest pain :(.
He told Tariq that i'll be there soon to annoy you all :) .
Umair,
Please take care of your self,we are waiting for you and missing you,please keep updating us either on the forum or through sms,you have mine and Tariq's number now.
Hope you'll recover soon.
Zaini.
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Umair
Hope you are back and kicking soon. :getwell
take care
maha
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Malaria? :o It's so sad to hear that! Umair, look after yourself & hopefully the pain and weakness will leave you ssap!
:flowers :getwell :flowers :getwell
Dore
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Oh dear, Malaria! I hope you feel better very bro, please update Zaini and Tariq so that they can let us know how are doing.
Take care,
Sharmin
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Umair, my friend.. wishing you a speedy recovery. take care and stay well for us :hugfriend :hugfriend :hugfriend
manal
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Hi ALL ,
Zaini, Tariq, Sharmin, Manal, Maha and Dore, Thank you all for keeping me in your thoughts and prayers in my absence ... feeling quit well a little weakness is remained, to that i will heal soon ( if GOD wanted ) .... i m back bcooze i was feeling realy bored and tired of resting on the bed ... but i learned something to the Malaria that is , never underestimate the enemy hehehehhe i under-estimated mosquitos and mosquitos strucked realy hard OMG ..... anyways , all is well now .... nothing to worry about ....
Take Carez
Umair
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Umair,
(http://i146.photobucket.com/albums/r266/dolly_054/WelcomeBack.jpg)
Zaini.
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Thanx Zaini Sis :) .... :grin :grin :grin
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Hey Umair welcome back
next time keep moving urself so that mosquitoes dont find a perfect landing spot
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Hi Umair
Good to have you back. If malaria is common at your place, make use of mosquito repellent cream. There was a time when there was chikungunia here, I closed all the windows and tried every possible way to keep mosquitoes out. It worked but unfortunately my daughter went to my mother in law's place and caught it there. My mother in law and daughter both got bitten by the mosquitoes on the same day.
Take care of yourself and investigate that stomache ache. You should not keep that going.There is a gel for stomach aches which you may have in pharmacies. Do you use that gel?
Jade
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Umair, so happy to hear from you :wink
One tip to avoid having mosquitos, is to put on your skin perfume or eau de cologne that has a smell of lemon. They will just keep away as long as they smell the lemon.
Also you can put in your house citronella oil (it is extracted from different plants) Put the oil in a clay plate and lit a small tea candle under it. The smell coming out of the oil will prevent the presence of any mosquito
manal
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Hi Manal, Jade & Tariq ,
Thanx for the tips buddies , theses are great i will definitely try one by one, .
Jade , My sad story is little similar to your daughter's one . i was pretty much safe but mosquitos took the advantage of the pump which i was wearing right beneath the right arm, and needle was pricked in my upper area of right arm near shoulder, bcoze of that my slaping power was dis-abled .
mosquito saw it and took the advantage of it , otherwise they everytime got slaped to me when ever they planed to bite me , soo you can say that then bitten a wounded young-man ... aah coward mosquitos .... well now security gap has been covered Mortein spray and mortien liquid has been added to inventory. spray to kill mosquitos first and then mortein liquid to all night "suraksha" ( security ) hahaha ...
Manal , its a good idea of using Lemon's smell , i think that i have a body spraythat has lemon like smeel i think that will work ..
Tariq bro , Great idea buddy , but i have another one , i m planning to write a Note and hang that on the door of my room , and that note is " knock and ask for the permission to come inside " no mosquito can knock if one of mosquito succesfly knock's the door then i will say "No" then mosquito will return back hahahhahhaa ....
Thanx buddies for usefull tips .... i will try my best to keep my self safe from mosquitos .... and definitely i will use try these tips as well ...
Best Regards
Take Care
Umair
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Hi buddies,
i m heere to share another bad news ,... here it is ..
i m hearing back to back bad news about my health ,after Malaria, i m having swelling on my feet , today i went to visit my Local doctor (he's my docotr since my childhood) for check-up , he told me that swellng on my feet is bcoze of heart function . i dont wat realy matter is but he prescripted a tablet and told me that take pottassium rich fruits ( for example Banana etc...etc...) . i m not worried but feeling realy sad bcoze of these back to back set backs . hope these all things will dis-apear soon ....
Umair
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Umair,
Are you still taking Kelfer? It will help your heart. Also, if you can ever take IV desferal that will also help. Make sure you are also taking magnesium with your calcium. I know you've been sick but now it's time to catch up on chelation and be very aggressive. IV desferal is advisable.
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Umair,
I am sorry to hear that you are dealing with more troubling news. Is the doctor sure that the swelling is due to heart function and not with having malaria and being off of your feet for a while?
I agree with Andy, you should begin IV desferal and continue chelating with L1. Are you taking L-carnitine? L-carnitine is very good for heart function - it is being used in Oakland to improve heart function.
Please take care of yourself,
Sharmin
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Hi Umair,
So sorry to hear of your relapse,
I suggest you ask the doctor to check you Kidney too.
I said that, because having been diagnosed with diabetese , it could be possible that the kidney is not functioning properly and directly affecting your circulation and thus ,retaining fluids which in turn is causing the swellings.
I would also suggest you elevate, your feet whenever possible it help redusing the swellings.
My thought and prayers are with you . Keep on trying you are young still a long life ahead.
Good luck
Love
Kathy
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Hi Andy ,
yeah, i m still taking Deferiprone (But Ferriprox and 500mg 8 tablets a day ) , it has been a little long since i took Iv desferal bcoze my thal center is no more permission to use desferal during Tx , i always use my own desferal but they are not allowing me as well , when i asked why they are doing this all ,they answereed it make's difficult for them to judge the reason of Allergy between desferal and Blood, when any patient got any kind of allergy ... i said , i dont have any history of allergy to desferal soo may i use they answeered that it is less usefull during Tx ( only 30%-35% ), soo it will be good and more usefulll if i use it after Tx ... i m not agreed at all but they insist too much soo i gave up . i m using OsteoCare on the packing of Osteocare written that it has 100% RDA ( Recommended daily allowance ) of Calcium, Magnessium and Vitamin-D .i m back on chelation from Wednesday and i took 8 vials of 500mg from Tuesday to friday , its friday night and i weared the pump again , soo, wat i want to say i m agressively com;liant with chelation . i m also thinking to celebrate an IV desferal day As "A blast from the past" ..... i think my heart is doing this all bcoze when i was having malaria i think my Hg dropped down too much that is why my heart started troubling.... well still trying to cope with all the troubles and still hopeful ...
@ Sharmin
Sis, i took my last of Malaria medicine on last sunday's night , then i had Tx on monday . i m back to routine life now but swelling is stilll dis-apearing and coming again playing like this ... if i sit for a long time swelling occur's . if i m walking or laying on my bed then its not dis-apearing easily . and breathing prob that occurs sometime , alll the symptoms are not good . it not related to anything else , its not poiting anyother issue .
as for L-Carnitine , a little ago i asked to my heamotologist abt it but she said no , i dont know why but my treatment were not the same to my thal center's friends who r recently bcame a patient of my doctor . my doctor starteed them Vit-c earlier in the treatment and many other differences . after having this probleme ( swelling ) i will ask her about L-carnitine again for my heart function , lets see wat she say ..
i m doing my best to take are of my self lets see wat future is holding for me ...... :)
@Kathy
Thanks for the wishes and sugestions kathy , yeh it could be possible reason as well . i will defiinitely ask abt it to my doctor to sugest test to check the status of kidneys , in my last USG radiologist reported that my both kidneys are good and working properly , but i will ask my doc to advise some kidney test if she thought the same that you are pointing toward . thanx for the tip i will try it as well . please keep remember me in your prayers .
Take Care
Umair
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Umair, i am so sorry and concerned about this news please keep chelating as much as you can and remember that this is reversible as long as you are dedicated to chelation and i know you are.
As for L-carnitine, there are about 5 papers done on the usage of L- carnitine and thalassemia , they are all published in scientific journals.
Improvement of Cardiac Function in Thalassemia major Treated with L-Carnitinehttp://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=76522&Ausgabe=229926&ProduktNr=223829
Assessment of Puberty in Relation to L-carnitine and Hormonal Replacement Therapy in {beta}-thalassemic Patients. http://lib.bioinfo.pl/auth:El%20Beshlawy,A
Apoptosis in Thalassemia major Reduced by a Butyrate Derivativehttp://content.karger.com/ProdukteDB/produkte.asp?Doi=87890
Diastolic Dysfunction and Pulmonary Hypertension in Sickle Cell Anemia: Is There a Role for L-Carnitine Treatment?http://content.karger.com/ProdukteDB/produkte.asp?Doi=89472
Pulmonary hypertension in beta-thalassemia major and the role of L-carnitine therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19065439?dopt=Abstract
i can assure you Umair that it is a safe substance that is already found in each cell in our bodies. Hope this helps and keep us updated
manal
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I agree. I believe that L-carnitine has made a big difference to Ahmad's health.
Umair, even though you have made good progress in your ferritin levels, your iron was so high that you have not really done much to remove the iron from your heart yet. As much as you have been chelating, you really need to do more and you should also be loading up with antioxidants to help protect your heart. I will be frank. Without aggressive chelation, you will end up in big trouble. You are beginning to exhibit the signs of congestive heart failure and this has to be reversed. The first step in this should be IV desferal for up to two weeks. This would make a huge difference and would also greatly improve the effect of your daily chelation routine.
When I talked with Dr John Wood at the Singapore conference, I asked him about putting the protocol for treating heart failure in thals that he designed onto a CD and distributing it to every hospital in the world that treats thalassemia. He said it's a great idea except for one thing. He asked will doctors actually look at it and follow this proven protocol? He felt far too many won't. Umair, are your doctors willing to listen and learn? If they are, then they will find a way to get you on IV desferal to clean out the iron.
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Also Umair,
IV desferal does not have to be given during blood transfusion - as Andy said it can be given between transfusions up to two weeks. We need to clean the iron out of your heart and we need to act fast. You need to be on L-carnitine right away. Are your doctors willing to speak with the Docs in Oakland? I am sure that they can get a telephone consultation.
Please take good care of yourself,
Sharmin
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Hi Umair
I am really sorry to hear that you have even more troubles. You should talk seriously to your doctor. She is used to be very helpful, if you explain what you have gathered from the information emerging from the conference, she may pay attention. Has your ferritin gone up? I thought you successfully had it under control and that it was quite low. Can't you get desferal from any other place? I wish that you get to resolve this problem soon. I know that it is hard since you are just recovering from malaria but all these problems form part of life and show that we still count. You are a courageous young man, you can take this up but you have to find a solution soon. I believe you should go for the tests (heart and kidney) to determine exactly what it is and then take the appropriate action. Heed Andy's words (Andy should have been a doctor, he would have done a great job).
Take care. You are precious to all of us.
Jade
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That's frustrating.
Umair,
Bhai you are getting it wrong,you don't have to take IV desferal while transfusing,you can take IV desferal in between transfusions,i don't know much about hospitals in Faisalabad,i wish you can come to Karachi,i'll go with you any place i can.
I understand Dr Javeria Mannan is is lahore? it will take time to reach her,can you talk to your doctors in thal center where you go for transfusion? Tell them that you need 24 hour IV desferal ,it will create big changes,ask your dad to force them.
As for antioxidants,if you are not taking IP6 or L-Carnitine,you can atleast drink a lots of green tea.
Please don't feel sad we are all here for you.
Zaini.
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umair buddy sad to hear about ur condition... ???
please try to do the IV desferal therapy...
i did it too every second week...
and a quetion i have too....
should i take l-carnitin too..and how mutch...
and how it helps? panos
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Umair: in 2005 Salman had this swelling problem, his legs were swell then some other parts... when we took him to hospital they did ECG and few other test and got to know that his heart's right side was filled with water..
They gave him LAXIS, through urine all the water came out and they gave few other medicines too, cardiologist, endocrinologist inshort everyone was involved..
I would recommend u shud go for ECG!, and yea.. he was on IV desferal 24/7! :) that helped too!
prayers always with u!, be strong!
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Panos,
L-carnitine will help you in a few ways. It will protect your body from the oxidative stress of iron. L-carnitine is also a NO inducer. NO helps our blood vessels adapt to changing blood volume by making the blood vessels more elastic so that they can enlarge or shrink as required. In thalassemia for various reasons patients often have lower levels of NO and the blood vessels become more rigid and less able to adapt to changes in blood volume and this leads to pulmonary hypertension. L-carnitine helps this situation by inducing NO. Watermelon is also said to be an NO inducer. I definitely think that all thals should be taking L-carnitine, and this is the recommendation in Oakland as well.
Sharmin
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Panos
The dose for L-carnitine is 50-100mg per kilo daily divided into two or three doses.
The above mentioned studies were done on 50mg/kilo
manal
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Umair,
I hope that the swelling has subsided. How are you feeling now?
Sharmin
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Hello Everyone,
Me and Tariq we both kept sending messages on Umair's cell,then we called but he wasn't answering,then Tariq searched his home phone number in directory and i called there.His father received,he said Umair is bit better,swelling is bit better too,not totally subsided i think,he mentioned a medicine that doctor has doubled the dose,i wasn't able to understand the name.
I told his father that IV desferal will help him and that an ECHO should be done immediately,he said we'll leave for Lahore to see Dr Javeria Mannan tomorrow,i told him to tell her that.
Now lets see what happens,i hope Umair will post here soon.
Zaini.
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Thank you so much Zaini for the update
manal
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Panos,
L-carnitine will help you in a few ways. It will protect your body from the oxidative stress of iron. L-carnitine is also a NO inducer. NO helps our blood vessels adapt to changing blood volume by making the blood vessels more elastic so that they can enlarge or shrink as required. In thalassemia for various reasons patients often have lower levels of NO and the blood vessels become more rigid and less able to adapt to changes in blood volume and this leads to pulmonary hypertension. L-carnitine helps this situation by inducing NO. Watermelon is also said to be an NO inducer. I definitely think that all thals should be taking L-carnitine, and this is the recommendation in Oakland as well.
Sharmin
What's a NO inducer?
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Hi buddies,
i m heere to share another bad news ,... here it is ..
i m hearing back to back bad news about my health ,after Malaria, i m having swelling on my feet , today i went to visit my Local doctor (he's my docotr since my childhood) for check-up , he told me that swellng on my feet is bcoze of heart function . i dont wat realy matter is but he prescripted a tablet and told me that take pottassium rich fruits ( for example Banana etc...etc...) . i m not worried but feeling realy sad bcoze of these back to back set backs . hope these all things will dis-apear soon ....
Umair
I am so sorry to hear that. I wished I talked to you on msn. This is the last thing I would post here today. I really must back the judgement of Court from the European Court of Justice now. Tomorrow I must held an presentation in English..brrr! :faint2
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Awe buddies ,
situation isn't that much critical , almost everything is under controle , it was just another episode of swelling , it happened several times in past as well ... i dont know the if it could becoze of urinary dysfunction , bcoze in my last 2 USG reports, radiologist reported these statement :
1) last one report's :
Urinary bladder is full . No stone, wall thickening or mass seen .
2) 2nd last report :
Urinary Bladder wal is thick and trabeculated however no stone or mass is seen within urinary bladder .
Note : before last one USG i wasn't feeling to go to washroom and before finalizing the 2nd last USG results radiologist told me to go to washrrom and come back again , then he finalized the report. kidneys are also fine .
i have a heart report that test took in sep-oct 2006 ( when first time i went to lahore and i was wheelchair and having high levels of BSL )
Conclusion : Normal Echo Study (it is written in that report)... in details it left and right IVs and ll other things was normal , its prety old report na .. i would like to ahave a fresh one. ...
@ Manal :
Hi Sis, i will definitely talk about L-Carnitine again to my doctor , i hope she will agrree this time , its sound's a relay good thing . soo i will definitely discuss abt it to my doctor . Thanx for searching and providing such informative studies papers ..
@ Andy
Hi buddy ,i m on comppliant with agressives chelation plan , i m on 6-8 days of chelation in gap of 10-12 days, between the 2 Transfusions . its pretty much agressive plan i think . as for IV desferal, i m planing for that as well . after ending this day of IM desferal tommorow i will start IV instead of IM ..
Without aggressive chelation, you will end up in big trouble. You are beginning to exhibit the signs of congestive heart failure and this has to be reversed
yeah , i m also doing my best to take controle of it ...
Umair, are your doctors willing to listen and learn? If they are, then they will find a way to get you on IV desferal to clean out the iron.
i will talk to her about it , and i hope that she would like to avail this oppurtunity to lean and she would also like start Iv desferal to me ( she never restricted IV desferal for me )...
@ Sharmin
Are your doctors willing to speak with the Docs in Oakland? I am sure that they can get a telephone consultation.
Hi Sis, thanx for the concerns and sugestion, its another good option , i will talk to my doctor about this option as well . let's see wat happened . doing my best to washout all the extra iron :thumbsup i m okiey ...
Umair, I hope that the swelling has subsided. How are you feeling now?
i m doing fine , and swelling is decreased as well ....
@ Jade
Hi Jade, thanx for the concerns, compliments and good wishes , i dont think that my ferritin is rising or risen up , i dont use to collect desferals from thal center, i always use my own desferal so supply isn't the probleme, even on TX day i use my own, bcoze i m a little bit cautious about storage and handling issue of desferal, soo its better to have ur own than having the doubt on the efficancy of desferal :) . I believe you should go for the tests (heart and kidney) to determine exactly what it is and then take the appropriate action
as i mentioned above my last USG reports , according to those reports my both kidnies (Left & right), Gall Blader and pancreas are normal . that USG took on 13-02-09 .... lets see wat happened . i agree to you Jade ,i have to go for heart and kidney test to find out the wat is going on .... thanx for the advise , every drop of advise is helping to keep this river flowing ... :thankyou2
@ Zaini
Hi Sis , i m also planing to take desferal IV at home , and as for thal center's doc , i think its better to consult one doc instead of 2 . it can create illusions between the two different treatments . soo its better to consult to one doc who know your history as well ... as for IV desferal i would like start that tommorow . my papa want to take me to lahore on this friday but i want to wait a little bit bcoze it near to complete the course of a medicine that she advised me for stomach aches , soo i want to finish the course and then test and then want to go to lahore , all this will take 7 more days , i want to visit my doc's clinic on 20th march .... till then i will stress on IV desferals . here are three thal centers in Faisalabad, which like i want a huge one thal center instead of three small thal centers . coze i think that it will be more efficiant aand effective than three smalll and limited capable thal centers (it was an example).... situatioon isn't too bad here , they are fully equiped with basic needs for a thal center .. but patients are little careless here ,, :grin but i m not :grin .... i m in safe hands ... :thumbsup ...
@Baal
Hi Baal , Thanx buddy , surely i will do Iv desferal as much i can ... thanx alot buddy for concerns ..
@ Ayesha
They gave him LAXIS, through urine all the water came out
Hi Sis , for this purpose my local doc doubled the dose of a tablet i m taking on Aldectone , ..i will definitely go for the test you told .. ... thanx for sugestion :thankyou2
@ Zaini
Hi Sis , i think you're talking abt Aldectone that my doctor has doubled the dose , i m fine now , and yeah i will definitely go for ECHO , my papa told me abt that wat you mentioned , . actuly my cell always remain's on silent , bcoze i dont like noises , soo i keep it on silent always . sorry for the disturbance you gone through bcoze of my this habbit . but i use to check my messages a few time a day only .. sorry again for the disturbance ...
okey buddies take care
Best Regards
Umair
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I wished I talked to you on msn.
i hope too Dore ,
Take Care
Umair
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Umair, I am glad that your health is improving and that you are taking precautions and doing all of the appropriate tests. I am very very glad that you are going to be doing IV desferal.
Sharmin
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That's nothing special i have done Umair,we just like you to be here :) .We all just get worried when we don't get any response from you,it was nice talking to you :) .
Zaini.
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The med will help reduce the fluid but does nothing to counter the reason the fluid is there in the first place. The weak heart is the reason and iron is the reason the heart is weak. An echo test has some value for thals but it cannot diagnose iron overload, and this is why the T2* has become the test of choice for measuring iron in the heart. I can tell you right now that Umair would have a very low T2* score. However, Umair has been on the right track and what we are seeing is the effects of having allowed his ferritin to go through the roof in the past. Unfortunately, the heart is the slowest to release iron, so Umair is now at this point. He has made great progress in lowering ferritin but now he must also get the iron out of his heart. He can continue to do what he has and hope he survives until his the iron in his heart is slowly removed. Nur has been doing this by taking desferal 7 days a week. Her T2* score has risen from below 10 to close to 14 in her latest results. This is good progress, but as I told her, she is still in some danger and has to continue her hard work. However, if it was possible for her, and currently it is not because of her job, it would be much more effective if she could have IV desferal administered for 7-14 days straight. This is the therapy that would have the most dramatic and quick effect and hopefully, Umair will be able to take IV desferal for at least a few days straight. Masuma went through this and was even worse off, even though she had chelation at her disposal in the easy to use form of Exjade. She slacked and almost paid for it with her life, as she had to be hospitalized in the ICU because her heart had gotten so bad. Masuma also designed her own combination chelation using desferal and Exjade and her ferritin is now around 1000. Umair can do the same. I would also highly recommend that Umair take IP6 twice daily, as it does offer some protection against iron oxidation.
Umair, I know that with some work, you can turn this around, but IV desferal is where you need to start. You need this dramatic effect to get your iron down low enough to where you are in no immediate danger (and with symptoms of congestive heart failure, you have to realize that there is some danger). Once you get some of this heart iron removed, your daily chelation can do a much better job at keeping you happy and healthy. We're all here behind you and I know you realize that with our support, you can do this.
For myself, I am very happy to see the level of support offered during this time and I want everyone to realize how much easier it is for the patients when they know they have this support. I have seen what support has meant to Nur and I see daily what it means to so many people. We are truly embracing the spirit that Lisa meant this group to have and in my opinion, this is what really makes us different from so much of what you find online.
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I don't see a reply to this but it may have been answered already, but an NO inducer is anything that helps to increase nitric oxide levels in the body.
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Umair,
I also wanted to add that your doctor may not know the benefits of L-carnitine as well as Andy does. Little As doctor is a wonderful doctor and has generally done a great job with him, however - he does not have the same knowledge with regards to supplements that Andy does. I feel very fortunate to have put little A on the supplements that Andy suggested - because they highly commended their use in Oakland. I did not go to Oakland until 2008 - but luckily with Andy's guidance I put little A on supplements beginning late 2006 (shortly after the antibody problem started) and he was able to avoid many of the problems that the situation could have posed.
We are very lucky that our doctor supports what I learn here and in Oakland - and he agrees with it when I tell him about it - but he would not have known to suggest it himself. I was very fortunate to have learned about l-carnitine and alpha lipoic acid here because when I asked about it in Oakland they prescribed it for me and told me that it is being studied as a supplement that can improve heart function.
Andy has also been telling me about vitamin D - the doc here was aware of the deficiency, but perhaps not able to deal with it - thankfully Andy had me put my son on some supplement so that he could have some improvement - otherwise his health may not have been as good as it is.
We have also found that the echo is not as accurate as the T2* - so just keep working hard on chelating regardless of your echo results.
For these reasons - if your doc does not agree with this advice it may be a good idea to have her contact a center like Oakland.
Sharmin
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Umair, i can not add more than Andy and Sharmin.
The only thing i want to emphasize is not to underestimate the condition because the swelling has decreased or because it had happened before because as Andy mentioned the cause still exist and it might hit harder the next time.
All i want to say is that it won't be easy but with your detemination definetly you will do it and we are always be your side. Forever in my prayers
manal
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The med will help reduce the fluid but does nothing to counter the reason the fluid is there in the first place. The weak heart is the reason and iron is the reason the heart is weak. An echo test has some value for thals but it cannot diagnose iron overload, and this is why the T2* has become the test of choice for measuring iron in the heart. I can tell you right now that Umair would have a very low T2* score. However, Umair has been on the right track and what we are seeing is the effects of having allowed his ferritin to go through the roof in the past. Unfortunately, the heart is the slowest to release iron, so Umair is now at this point. He has made great progress in lowering ferritin but now he must also get the iron out of his heart. He can continue to do what he has and hope he survives until his the iron in his heart is slowly removed. Nur has been doing this by taking desferal 7 days a week. Her T2* score has risen from below 10 to close to 14 in her latest results. This is good progress, but as I told her, she is still in some danger and has to continue her hard work. However, if it was possible for her, and currently it is not because of her job, it would be much more effective if she could have IV desferal administered for 7-14 days straight. This is the therapy that would have the most dramatic and quick effect and hopefully, Umair will be able to take IV desferal for at least a few days straight. Masuma went through this and was even worse off, even though she had chelation at her disposal in the easy to use form of Exjade. She slacked and almost paid for it with her life, as she had to be hospitalized in the ICU because her heart had gotten so bad. Masuma also designed her own combination chelation using desferal and Exjade and her ferritin is now around 1000. Umair can do the same. I would also highly recommend that Umair take IP6 twice daily, as it does offer some protection against iron oxidation.
Andy, may I interrupt you?
At the moment I am not at the top of health nor at the top of good brain function, so this might be a silly question.
Your post make me feel very worried, to be honest. Exjade is alll I can take and in general it does not remove iron out the heart, does it? After 6 months it is still not working; it's not noticable in the blood results. I must go off now. I will write further so soon as possible, but i hope you understand what i am trying to ask... :shy
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Dore,
Actually, the early reports on Exjade and heart iron have been good. It does appear to remove iron from the heart. Is your dose high enough yet? 30 mg/kg daily.
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i have a problem too.....
i have start the l-carnitin like manal told me...
but for a few days.....
i have terrible sugarlevels.....
gos to 300-350....
may this comes from the drug?
and if....what to do?
panos
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Panos,
I don't think that L-carnitine should have any affect on your sugar levels - but Andy would know better than I about this. L-carnitine is a naturally occurring amino acid so I don't think that it should have this effect.
Sharmin
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Panos,
Is there any sugar of any sort in the ingredients? It shouldn't raise sugar levels. In fact, there is some belief that L-carnitine can make insulin more effective in the human body, although studies of this have had conflicting results. However, no study has showed any negative effect on diabetes from using L-carnitine.
http://journals.indexcopernicus.com/abstracted.php?icid=866864
Effects of L-Carnitine on Glycemic Control and C-Peptide Levels in Patients with Type 2 Diabetes Mellitus
Shahram Hadadinezhad, Nargess Ghazaleh, Zahra Razavi
Turkish Journal of Endocrinology and Metabolism 2008; 12(1):1-9
ICID: 866864
Article type: Original article
IC™ Value: 4.42
Objective: This study investigates the effects of L-carnitine on glycemic control in non–insulin-dependent patients with diabetes mellitus.
Materials and Methods: The effects of L-carnitine on levels of blood glucose and C-peptides were studied in 25 women and 35 men with type 2 diabetes mellitus, with an average age of 53.3 years. Patients were randomized to either the L-carnitine or the placebo group. During a 3-month period, 1 g oral L-carnitine or placebo was administrated 3 times a day (3 g/day).
Results: A significant reduction was observed in the fasting blood glucose level in the L-carnitine group at Week 12 (end of study) compared with the level at baseline: 143.93 ± 34.74 mg/dL and 129.43 ± 32.16 mg/dL, respectively (p < 0.05). No significant changes were observed in either group for concentrations of 2-hour postprandial blood glucose, hemoglobin A1C, or C-peptides.
Conclusions: L-carnitine significantly reduced the fasting blood glucose level at Week 12 but had no effect on 2-hour postprandial blood glucose levels, hemoglobin A1C concentrations, or C-peptide levels in patients with non–insulin-dependent diabetes mellitus. Turk Jem 2008; 12: 1- 3
No study showed an increase in sugar levels but some showed a temporary decrease.
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@ Sharmin
Thanx sis , yeah i m gonna start IV desferal today ... :)
@ Zaini
we just like you to be here .We all just get worried when we don't get any response from you,it was nice talking to you
Hi Sis,
i m feeling that i m a Rockstar :happydance , you made me blushy :shy Thanx sis , its nice to talk to you and all of this site's members as well .... thats reason, why i m awake at this time :grin ...
@ Andy
Buddy , i planned to start IV desferal today , soo , i think m getting stareted from the mark you told me ,
i won't to admit in Hospital and stay even one night in ICU soo i planned to take IV desferal at home , i think it will b also good :grin , but if it bcome's necessory then i will think abt it , its not out of question , it wil still remain as an option . T2* and Ferriscan both Facilities are unfortunately not available here in my Country , soo it seem's like something out of question , but ECHO Facility is widely available here .
I have Also interest in starting L-Carnitine and i will talk to my doctor as well , last time when i asked her abt it somewhere in-between october & december 2008 , at that time i was on Hep-B's medicine and suffering to stomach aches as well , mayb she thats why she said no to it . but i wil ask her again .
@ Manal ,
Thanx for remembering me when you pray , i realized the danger that is waiting for me in future if i dont take it serious at this stage , soo , to avoid that worse situation i m planing to start working on pre-cautional steps to avoid any kind of danger in future ... Thanx for your concern :)
----------------------------------------------
Hi All,
:agree wat Sharmin said , Andy helped me alot to make a come-back in good condition as well , before joining this forum , i was searching searching and searching but unable to understand anything, i was unable to decide abt the information i got is latest or its true or not , i dont had any guidence , i found guidence here on this forum , soo much more to say but due to shortage of time ( here it's late night in Pakistan ) i just want to say , Thanx Andy for making this forum , for dedicating your time for this forum, for everything that you did in this sector , Hats of to you Andy Buddy :goodluck ... i dont think that it necessory to say but i want to say keep this good work up buddy .... you're realy a kind hearted friend , thanx for your concern . Take Care of you self as well , bcoze you're prescious/priceless for Thalassemia Patients , parents and friend , your are prescious to keep this forum runing .... soo Take good care of your self as well and dont forget take proper rest ... God Bless You ....
Best Regards
Take Care
Umair
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just thx for the respond....
at my packed they wright that there is
80 mg carbonhydrate in the l-carnitin....
shoud i get enother one...?
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Umair, I know that with some work, you can turn this around, but IV desferal is where you need to start. You need this dramatic effect to get your iron down low enough to where you are in no immediate danger (and with symptoms of congestive heart failure, you have to realize that there is some danger). Once you get some of this heart iron removed, your daily chelation can do a much better job at keeping you happy and healthy. We're all here behind you and I know you realize that with our support, you can do this.
For myself, I am very happy to see the level of support offered during this time and I want everyone to realize how much easier it is for the patients when they know they have this support. I have seen what support has meant to Nur and I see daily what it means to so many people. We are truly embracing the spirit that Lisa meant this group to have and in my opinion, this is what really makes us different from so much of what you find online.
Hi All buddies (Especially Andy),
yes can do it , and i will try my best, Your support mean's alot to me , soo please keep supporting me , i can guess where i could be without knowing this site, And without knowing you people, And without your support ... i believe that i wil come out of this condition as well , and i will try my best to make this possible . yeah :agree that, this community is different to so much other in many ways . Thanx for the support that you gave and thank you for assuring that you all will keep me encouraging in future as well ... it mean's alot for me .... Thank you all :thankyou2
( another reason why i want you to keep supporting me : i m gonna take part/contest election when ever it took place here in my country again :grin just kidding :grin )
Take Care
Umair
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Umair,
I think T2* is available here as it a form of MRI,go to any MRI center in Faisalabad or Lahore preferably and ask them if T2* ( pronounced tee-two-star) is available.
Zaini.
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Umair :biggrin :biggrin
You are not allow to abscond from the forum :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Aunty Zaini is keeping an eye on you :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
I'm glad because we all knows you are a naugthy Lad :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl;
On a serious note I hope you are ok,
take care
Kathy
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I think T2* is available here as it a form of MRI,go to any MRI center in Faisalabad or Lahore preferably and ask them if T2* ( pronounced tee-two-star) is available.
Hi Zaini Sis,
Thanx for the advice , i hope that it could perform on any MRI Machine , i wish that it happen's like you said , its a form of MRI so .. i would like to preffer to go lahore for this test .. you opened a new horizon of thinking to me .. Thanks Sis,.
@ Kathy
HI Kathy , i m super fine and hope that you will b fine as well ..
i also wont to stay abscent to the site but i dont know why and how it happen's everytime that a person like me who spent all the day at home and his only activity is internet stay's away from internet & computer for day after day ... soo its pretty much wondering for me as welll , how can i stay away to my Computer & internet for that much long time :dunno :dunno :dunno :grin :grin ...
Best Regards
Take Care
Umair
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Umair,
How is the swelling now? I hope that it has decreased.
Sharmin
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Hi Sharmin ,
Swelling is 95% disapeared and my feet are looking normal , just a little swelled ankles . everything is fine , and i hope i will cope with heart iron soon ,i m planning to have a Tx tommorow , after that i will have another 12 days tfor chelation .. yeah, swelling is decreased and feet r looking normal .... Thanx for your concern , it mean's alot of encouragement for me to cope any probleme ...
Best Regards
Take Care
Umair
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Umair,
How are you doing? Have you started your IV desferal yet?
How is the swelling after reducing your medication?
Sharmin
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Sharmin ,
Thanx for your concern . i m doing fine , i will start IV defseral tonight . its my2nd day after coming back on Aldectone's previous dose ( 1 tablets a day ) and feet are normal , no signs of swelling ( no Swelling ) . i hope that swelling will not occur again.
Umair
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I think I forgot my brains this week. I had also swelling from desferal, but god knows where. I really should start write about such things to avoid that I cant remember them good enough anymore.
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Dore,
when i was planing to make a chart of the trend of stomach aches ,(to show my doctor how often i m getting stomach aches and how long it take's to recover from it ), i forgot the exact dates when i got to suffer from stomach aches , then i turned my Computer On and open this site , and then this thread , and you know wat , it helped me to find the exact dates :) , ... bcoze this thread has all the info abt wat i have passed throw ( stomach aches ) ... soo its a good idea to write down all that here , it will also help you to find out the right way to get ride of any probleme , by discussing here , .. once again A BIG THANX TO ANDY :ty ...... i do appreciate all that you're doing for us , MAY GOD BLESS YOU WITH SUPER HEALTH AND LONG LIFE :pray ....
Have you started your IV desferal yet?
Yup, i have started IV Desferal just 3 hour ago ..... i have a question abt IV desferal but i think that for that question " IV Desferal" thread is best to place .... soo going to ask there ...
Best Regards
Take Care
Umair
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Good Luck Umair :wink
manal
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Thanx Sis , for wishing me Luck :) .
Umair
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Umair Also don't know how is he doing :grin :grin :grin help him reading his report :
Last CBC Report January 21 2009
Test Normal range Result
[Hemoglobin Haematocrit]
Hemoglobin 13.7 - 16.3 8.8 gm/dl
Haematocrit 41.9 - 48.7 % 29.3%
CBC
RBC 4.5 - 6.5 3.19 10E12/L
MCV 76 - 96 91.6 FL
MCH 26 - 32 27.6 PG
MCHC 32 - 36 30.1 %
WBC 4 - 10 22.8 x10E9/L
Neutrophils 40 - 75 37 %
Lyphocytes 20 - 45 55 %
Eosinophils 1 - 6 03 %
Monocytes 2 - 10 05 %
Basophils 0 - 1 00 %
Platelets 150 - 400 554 x10E9/L
Latest CBC Report 17 March 2009
Test Normal range Result
[Hemoglobin Haematocrit]
Hemoglobin 13.7 - 16.3 ng/ ml 9.5gm/dl
Haematocrit 41.9 - 48.7 ng/ ml 28% ng/m
CBC
RBC 4.5 - 6.5 3.24 10E12/L
MCV 76 - 96 89.2 FL
MCH 26 - 32 29.4 PG
MCHC 32 - 36 33.0 %
WBC 4 - 10 13.0 x10E9/L
Neutrophils 40 - 75 40 %
Lyphocytes 20 - 45 50 %
Eosinophils 1 - 6 02 %
Monocytes 2 - 10 08 %
Basophils 0 - 1 00 %
Platelets 150 - 400 810 x10E9/L
Andy and all others , wat do you think ?? is this something to worry about ???.... Waiting for your answer ...
Take Care
Umair
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Umair,
Your platelets are elevated - usually they are a little high for thals so your Jan21 results are not concerning. However, the Mar17 results may be of concern if the elevated platelets persist at this level. Are you taking vitamin e?
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I dont see anything wrong. I am bit suprised actually. I have been told that thals also have strange MCV, MCH, MCHC.... yours look normal to me. My are always normal.
I always wanted to know what 'WBC' is... :wink
Owh, I read Sharmin's post. I thought you dont have a spleen anymore??? My platelets are always very high, because there are missing my spleen.
What has vit. E to do with it?
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Umair,
Your ferritin is still steadily dropping, which is good news. You are finally getting down into a range where the chelators will start making a serious impact on organ iron load, so keep up the good work.
The platelets are high, but until you see a repeat of this high reading I would not worry. Platelet test is one of the most inaccurate of all tests and relies greatly on the skill of the tech reading the test. Techs not familiar with thalassemia will often count the small red blood cells as platelets, so the reading can be far from reality. Platelet levels also vary greatly from test to test, so I always say wait until you see two high tests in a row before getting concerned. I know a lot of people who have spent a month worrying, only to see the level drop back down with the next test. I highly recommend vitamin E and one property it has is that it is a blood thinner, so keep taking E daily. Your white cell levels are high but that is expected when fighting infections.
There is also a possibility that this is related to malaria. Malaria tends to exhaust platelets, which then tend to aggregate in the blood until removed. This could cause a temporary increase in what is observed in platelet counts. This should level off as your body cleans out the old platelets. Again, make sure you are taking vitamin E daily.
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Sharmin ,
yes, i m taking Natural vitamin-E 400mg and synthetic 200mg ... i never saw my platelets in normal ranges in my any report to the time i bcome able to read my reports ( tothe age of 12 :grin ) is it something to worry abt ???... is it something serious ??..
What has vit. E to do with it?
Yeah,Dore ... i dnt have splleen , my spleen was removed at the age of 15 ...
WBC = White Blood Counts/Cells ....
in my reports almost everything is out to normal ranges hehhe :grin ....
Andy ,
Thank you andy for a brief reply , yeah i m taking vitamin-e as i mentioned above , your reply relieved me , otherwise i was worrying about high platelets , i will try to have another CBC test within 10-15 days to confirm it , not only to confirm it but that is good another aspect as i m taking Feriprox as well ...,, Thanx again buddy ...
Thank you all ( Sharmin , Dore and Andy )
Best Regards
Take Care
Umair
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Umair,
always say wait until you see two high tests in a row before getting concerned.
I agree with Andy, you shouldn't worry about the test results right now - especially because they were good in January. They will probably be better next month.
I am glad to know that you are taking vitamin e.
Sharmin
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Sharmin,
Sorry for late reply , i dont know how i missed this thread ... yeah, i got to understand that i can't make the difference/change in my reports by worrying/concerning about it.. So, it would best to take it easy, dont worry about the reports iand look for the next test , i m planing to have another CBC ( as its sugested to keep WBC record while taking Ferriprox, for this purpose i would like to ave CBC again ) before my next Tx probably expected in the end of march or 1/2 april ... .... hope that will b finer than this one ... They will probably be better next month
I hope that ....
Thanx for making me to understand that it could bcoze of wat i have passed through last month ,
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It is not relevant to this case, but I went through my results of trombo's of this last year. I don't know of it makes sense when I saw that I had high trombo's when my fe was high. Now that it has dropped, my trombo's has been dropped too. There are almost in the normal ranges. Is it coincidence?
Ok, confession: I haven't take my supplements for a month :scratch :thumbdown :imsorry
Dore
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That's not good Dore :( supplements will help reduce oxidative stress in your body,and will protect your bones,please be regular with them.
Zaini.
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Dore , Zaini is Right , :agree to all wat zaini said . this is not good to forget your medicine or miss the medicine or taking your medicines on hold without any docotr's Advise ... soo, be regular with your medicines ...
Well, i m pretty regular with my medicines and try very hard to not miss even one dose .
A Question to Andy and all others :
does high platelets effect's the S.fe reports ?? i think yes , what do you think (Andy & all others ) ??/
Best Regards
Take Care
Umair
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I don't think the platelets themselves would affect serum ferritin readings, but the reason for there being more platelets might.
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Thank you Andy ,
-
Umair,
How is the IV chelation going?
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Sharmin,
IV Chelation .....yeah, that is gone away to me after once i had that for 63 hours :grin .......... i have to continue that for a little long time ????? ... :grin :grin :grin actuly, after seeing my reports i had a Tx and after that planing.... planing ... and planing to spare some time to go to visit my Doc's clinic but don't meet to succes yet and bcoze of this reason everyday is passing without chelation ... aahhhaaaa .... i will start it again just after coming back after visitng my hemotologist ..... soo, everyting is on hold ( not medicines ) ... :grin :grin
Take care
Umair
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Umair,
I hope you are using pump at least,until you find time to go to clinic.
Zaini.
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Hi Zaini Sis,
:grin :grin :grin :grin
its break time .... i will resume it soon ,...
Umair
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Umair,
Are you at least taking L1? You should never be without chelation for more than 48 hours, that is when the iron causes the most damage in your body. Please be sure that you are at least taking L1 and IP6 when you are without desferal. The free iron in your body needs to be binding to something at all times.
This is one good thing about exjade, it remains in your body for 24hrs. I know that in your case exjade may not be an option at this time - but please ensure that a chelator and IP6 are on board!
Sharmin
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Sharmin,
Thanx for your concern, ....
yeah, i m taking Ferriprox 3 tabs thrice a day ... i will resume Desferal very soon, actully i don't buy Desferals to my City , i buy desferals from Lahore when-ever i need , i usualy buy desferal while returning after visiting my doc's clinic , soo i m waiting for next appointment, there is no fault doctor, its my own fault coze of watt we are getting late to visit her clinic ... i hope to manage to go to Lahore if this friday is free of any party or anything that keep us busy with other issues ( like time and weather last time we post poned visit bcoze of stormy rainy weather otherwise everything was ready ).... onething , i m taking Ferriprox more than 100mg/kg ( i heard that 100mg/kg is highest dose ) yeah, my weight is 42-43kg and i m taking 9 tabs of 500mg, my doc reduced the no# of my tablet to 9-8 a couple of months ago , i dont know why i didn't apply that reduction in Ferriprox ... does it matter to alevate SGPT and other things that come's under LFT ... yeah, i do have IP6 in my Cabin/Cupboard waiting for NOC to start it as my doctor given me NOC but condition was wait for stomach to settle down first ... soo waiting for stopmach and her permision to start ....
Best Regards
Take Care
Umair
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Glad to know that Umair,
When you do start IP6 you can start with a smaller dose and work your way up. I think that it will have many benefits for you.
Sharmin
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Sharmin,
yeah, i would like to start from 1 capsule a day and then i will swiitch to 2 after 1-2 weeks after 1st dose ... just waitng for the clarification of my doc about my stomach , (that my stomach is healthy to and i m not on risk of stomach ache , anymore .. )... i hope i will get this clarification in this visit , and just after that i will start taking IP6 ASAP ... yeah, i red alot abt its benefit and very eager to start IP6 ASAP .. hope that everything will be fine in this visit ..
Best Regards
Take Care
Umair
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Good luck,
I hope that your stomach ailments clear up soon!
Sharmin
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Thanx Sis,
i hope the same ....
Umair
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Umair i hope you are fine,i haven't seen you logging in since last couple of days,hope you are okay.
Zaini.
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I was thinking the same thing Zaini, I hope that you are doing well Umair!
Sharmin
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I think it was saturday that i had at chat with him.he had a tx that day & was feeling well.
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Hi all ,
:imsorry, forbeing disaoeared for a little long time . here is the reason why i have been absent ...
Thursday : i re-installed windows and were busy in setting it up ... but i think i came online on thursday 4th of april ...
Friday : infection that has started taking place on my right ankle got worst and it was realy dis-comforitng me , i was unable to walk and it was difficult to sit as foot is not in comfort by hanging ..
Saturday : there was a wedding ceremony in our reltaives in lahore soo we had to go , i didn,t want to go there bcoze my ankle was (and still) swollen too much and i wan't able to wear boot , and feeling not comfort to sit on chair , but it was the complussion to go to Lahore bcoze i had to visit my doc as well, and i planned to discuss it with her ...soo i went with my family and attended the (one night of) wedding un-willingly after visitng my Doc .... i wasn't here on saturday
Sunday : then we came back on sunday night 10;00pm , after dinner and taking all my medicine i got severe ache/pain in my ankle ,that was too much disturbing, it was feeling like its a Fracture ... and that remains as it was after taking pain killer (dicloran (diclofenac sodium) No relief , my foot was swollen too much, and unbareable pain distrubed me all the night, then i did wat my doc said to do , then i got some relief it was 4;30am when i felt sleepy ... i was and stil having probeleme in walking , but that time i was unable to move my effected foot , its better now but not completely cured/reversed .....
Monday : i slept all the day after a horrible night with unbareable pain ... woke up at 3;oopm and then offered prayer then meal then another prayer then again went to bed ... then woke upat 7;30pm and then again prayer andrest another prayery then dinner and then rest ... rest ...rest ....
and after doing all that doc said and taking all my medicines i slept again ...
Today : i m a little fresh so i m on internet again , my swollen foot is resting over a chair :grin and i m waiting for my medicine time ..... i hope swelling will reverse today as it is in decreasing trend to yesterday .....
P.S : Dore, it was Thursday when i had Last Tx ... and i think it was the same date when we last met/chatted on MSN...
Sorry for making you worried and thanx for your concerns ... Especialy for the good hopes :grin ...
Take Care
Umair
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But Umair,waht did your doctor say about your swollen ankle,its not a good sign bro :( .
Zaini.
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Zaini
Sis, My doctor said it is the result of Worm/insect bite , bcoze it is only on my right ankle .. she said its nothing related to blood circulation bcoze its on single ankle ... she said , its infection bcoze of worm bite ... she told me to dippp effected foot in Salt mixed semi-warm water for 15-20 minutes and then dry it with towel then apply any oil or cream ( i used to aply olive oil ) on it then cover it with bandage ..... i was thinking that it could be DVT as well ( a man in a hospital like thinking ) , ut there was no dis-colouration on ankle or foot soo .............. then secondly Arthritis bcoze the day when i first had pain on very tiny area of the same foot near ankle , but not sure.. i think it is wat doc diagnosed, worm bite and infection bcoze that area was warm at that time ... lets see wat happened next and wat it is .... i m planig to resume Chelation with pump Today, its has been 15-17 days since it is on hold , i m desprately want to start it today but at the same time thinking about the ankle bcoze it is making dificult to walk and having needle in body will make it more difficult ,, i will try my best to resume it today ....
Take Care
Umair
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Dear Umair,
I'm happy to hear from you! I really hope your ankle heals fast. Keep a close eye on your ankle and also keep us posted on the recovery.
Get some more rest and take care of yourself!
Best,
SF
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Umair my friend, I hope that the ankle heals very soon. I am so sorry to hear about all of the pain that you are having to endure :( I am hoping and praying that your ankle will heal very soon. I hope that things work out with the desferal today.
Best of luck,
Sharmin
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Umair,
Is it possible for you to have an ultrasound of your leg to see if there is a clot? If this is deep vein thrombosis, it can pose a danger and should be treated. Symptoms are pain, warmth, redness and swelling. I really think this needs to be checked out soon.
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Umair, get well soon and please do the ultrasound, it will be more precise to diagnose. Please update :hugfriend
manal
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Good to see you back umair.
Just to be sure of proper blood circulation in feet, check sense of touch is proper in area below your ankle and also look for sign of numbness in feet. And as suggested, you should go for ultrasound if you feel a problem.
Take care of yourself dude
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I have lost the time of days completely because I have slept lots as well. I agree with the others. Take GOOD care of your feet!!!
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Hi All ,
Thank you everyone for your concerns prayers and good wishes and alot of good advices ... :thanyou2
SF ,
Thank you SF, /.....
i will try my best to keep you al updated with the developments ....
Sharmin,
Thank You, for prayers , its all bcoze of prayers of you people that i m in much better condition than i was when i first loged-on this site. ... prayers are always needed .... i have putted on the pump and back on my chelation plan , hope to see improvement in all apsects ...
Andy,
yeah, i have mentioned of the possibility of DVT ( Deep Vein Thrombosis ) in my last post , but i didn't see any dis-colouration over the effected area ( no purple or blue spot ) but it is not out of question yet ... i would like to wait for tonight if pain would remain as it is then i ill ask for ultrasound ... pain is much decreased than it was fore starting the treatment of salt mixed warm water water , but i will look further for test and ltrasound if it would remain ... yeah, its possible and very easy to have an Ultrasound /.... Thanx Alot buddy for your feed back over this ...
Manal,
Thank you for the wish and sugestion , i will keep you updating ...
Tariq ,
Thank you Bro , for such a good points , i think blood circulation is fine bcoze when-ever i tighten my thigh with hands i felt effects in my foot as well . sense of touch is finely working and sense of feel is working extra-ordinary thats why i felt that it could be a fracture as well hahahaha , but its not i think bcoze fracture cant heal fast and you cant feel relievd in as much earlier i felt, in fracture .... i continuesly taken dicloran ( diclofenac Sodium ) tthree night ( friday-saturday and sunday night ) .... but last night i didn't feel need to take that Pain killer .... yeah , surely i will go for ultrasound if it remains a little more ...
Door ,
hahahahaha , dont worry about it , its ok :thumbsup , i will take care of my self as much i ccan ....
Thank you ALL , Thanx alot for helping, caring and praying for me :thankyou2
Best Regards to all of you as well
Take CAre
Umair
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HI Umair Bro,
(http://farm4.static.flickr.com/3195/2704235789_9921c92d69.jpg)
take gud care of urself.
My prayers r wid u.
Pareeshay.
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AOA Pareeshay Sis,
Thanx alot for a super cuppy cake bandage , Thanx alot sis, for all the prayers and good wishes ...
Take Care
Umair
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Hi All ,
i dont know why but my BSLs are out of controle , my pre-dinner BSL was 348 and post dinner was 428 .. idont havea ny clue , i havn't taken anything that contained alot of Sugar in it ( natural sugar of food oter wise i dont add sugar in tea and anything else natural sugar means sugar which contained in wheat and vegies ) ... my BSLs are out of controle , i m trying to controle it by increasing insulin but result will come out in few days . .Prayers needed , please dont forget to pray for me while praying, i will be realy thankfull of you all ...
Take Care
Umair
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Umair, I think you should consult your doctor in this. Sometimes it is increased as a result of another thing that is happening in the body, not only food.
Please take care
manal
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Umair,
I am praying for you, as Manal said, please consult your doctor.
Sharmin
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Hi Manal & Sharmin ,
i started keeping record of my BSLs after a long time on my doctor's advice , and then i came to know that my BSLs are high , i remember once my doctor told me that Hep-C also play's its role to fluctuate BSLs, and could be a reason of variation between extremely high and extremely LOW Blood Sugar Level .... i m making a chart of it to show my doc, soo it would be easy to judge wat's going on , in Diabetes acount ... i dont know if its bcoze of something else , happening in me ... i m making a chart and then i will contact her soon .... Thanx Alot Manal & Sharmin Sis ... you people are helping me alot, to come back in life, and to keep fighting .... Thank you ...
Alots of Good Wishes
& Best Regards for you families....
Take Care
Umair
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Sharmin
I hope that ankle is feeling better. Are you able to move around easier
Hi Sis,
i m feeling fine and now easily move around, ankle is not aching anymore but a little swellling is still there on it , but swelling is reversed upto 90% .. now its easy to walk .. i m fine now ... hope that it will back to normal within a few days ...
Take Care
Umairrrrrrr
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Good luck Umair with the chart, it is really a good guide for the doctor, will be waiting for the update
manal
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m feeling fine and now easily move around, ankle is not aching anymore but a little swellling is still there on it , but swelling is reversed upto 90% .. now its easy to walk .. i m fine now ... hope that it will back to normal within a few days ...
Umair, glad to hear your ankle is healing. I hope it goes back to normal in no time. Please also try to manage your glucose levels better. Keeping a record is definitely good for both yourself and your doctor.
Best regards,
SF
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Hi Manal & SF,
Thank you for good wishes.... i m making a chart but it is not good in miy favour bcoze of high levels my doc would be angry to see BSL results :grin of me (No , its nothing like that angry , she would be not happy to se the chart , thats wat i wana say )... BSL results are decreasing as i m controling my eating habbit ( i were monster like something at eating for the last couple of weeks .... No , i dont have worm in my stomach , here's another reason for being monster at eating and that is Ferriprox 9tabs a day , which were the more than 100mg/kg dose , yeah my wieght is 41kg and 9 tabs means 4,500mg ),... soo where i was yeah BSL ...
abt ankle : ankle is fine now and no swelling is there on it but a little ( its bareable and not dis-comforting me ) Ache while walking but its bareable, BUT, i wil contineu treatment uptill it dis-apear completely...
i have just started IV Desferal again , not bcoze of any complication but to achieve my goal of S.Fe below 1000 as sooon as possible ... soo next 3 day are dedicated for IV DFO and then Tx on tuesday and then SubQ DFO for 2 days friday will be a rest day and then again ...... soo an agressive chelation week is ahead ...
Thank You For your Concern and Good wishes ...
Best Regards for both of you , may God Bless you n your Families with the best of health n every thing (AMEEN)..
Take Care
Umair
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Good luck with the chelation Umair :thumbsup
Zaini.
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Zaini,
Thanx Sis :thankyou2 ....
Umair
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Hi Buddies,
as mentioned that, i planned have IV desferal for next 3 days , on last friday, but planned were changed and expanded time-to-time during last week , i have planned to that till monday night and then tuesday Tx day and tuesday night Im Desferal's night , but on monday night i saw IV was working pretty fie no clot anthing else so i added one more day (tuesday, yeah, Tx Day were added to that IV's schedule ) and then wednesday & Thursday were added to cope with incoming iron from recent Tx , but unforunately a miss-happ led it to stop half done, on the night between wednesday and thursday i had to stop it bcoze i forgotten that the stock of drips was finished , i forgotten that coze i wasn't the person who made the last drip :grin , and other reason was all my family memebers was missing me in daily meetings ( they come's to meet my grandma ) and all the relatives and my parents was worried , why i m doing too much chelation ...
soo, for the last week chelation score was , 5x 5oomg vials and 5 days , 8.5 mg iron per 100mg desferal , soo total iron = 1062mg iron ( 85mg per 1G desferal , 25 viials mean's 12.5g and 12.5 x 85mg = 1062 ) wow lots of iron wasted alas ..... ..
Thanx for your support buddies,
especially :ty to Zaini Ssi ......
Best Regards
Take Care
Umair
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Umair,
Good job bro, the hard work you are doing right now is going to pay off manifold in the future when you don't have to chase the iron down anymore - you can simply maintain it. God bless - we are so proud of you!
Sharmin
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Hi Sharmin Sis,
Thanx for your Encouragement , but its not gona end yet after getting down Ferritin below 1000 ,. i got to know my doc's plan and that is to start Hep-C treatment bcoze i cant be a candidate for Asunra (AKA Exjade) untill my liver shows improvements , i m trying to recall but not 100% sure wat was my questio it was
Can i start Asunra if my LFTs comes to normal ranges only wiith medicines (without Hep-C treatment) ??, or it was , Can i start Asunra yet ??, she replied that my ALT is high, so "No" , exactly wat i want to say is after getting S.Fe below 1000 she will start interferon therapy bcoze she said i have both viruses (Hep-B & C) soo i think in her point of view there's only 1 choice in treatment book for me ... she said to contineu desferal as long i can bcoze it is the only chelating drug that i can use to take during Peg-Interferon Therapy , and during therapy , bcoze of decrease of Hb again and again i wil have to take Tx very frequantly, soo definitely iron will increase as well ... and that is more dis-hearting , it took almost 1 year to get on this stage and i m seeing the chances of getting back to iron overload in future .. but, i dont have any other choice and as i have both viruses it couldn't be controled with medicine , as i complete Lamuvidine's course of 3 months to controle Hep-B viruses its better than it was before starting that treatment but its not completely sweept out ..... sooo i dont know wat i m gone go through in soon future .... i started chelation to be fine and healthy to join my Father at bussiness ( to get a reason to come out to home as my father said me to join for a few 1-2 hours a day to refresh my mind, it is the oly activity option that i have on daily basis to go out of home for time pass ) but it has been 15 months to that i m still in progress to join :grin ... and now 6 months more to wait for ..... anyways , its the part of life ... soo , leave it ..
Best Regards for all you people l.
Take Care
Umair
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(http://i195.photobucket.com/albums/z59/mbabynewk/So20Proud.gif)
Zaini.
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Bravo, Umair! You've done great in the last few days with DFO!
Today, I'm trying a little less than 2.5g mixed in 20ml over 20hrs SubQ. Let's see if additional dilution and longer infusion time helps with the irritation around the site...
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@ Zaini ;
Thank you , for the encouragement , its mean alot for me , Thanx alot :) ....
@ SF ,
Thanx GOD its only bravo not Johny BRavo ahhahaha .... Thank you for encouragment , yes you can also do it , 2.5 is good dose , my doc prescripted me 2g in my last visit i told her that i m on 2g dose since last febraury and never got any reaction , she smiled and replied but its the fine dose for your according to your weight but :grin yeah today i m gona try 2.5g ahhahaha ...
yeah, longerinfusion time and additional water will definitely help you to get ride ove irritation and cyst like lumps , as once i asked to my doc that can i take 3 vial in 10 or 12ml water? , she replied " No it will make solution a little thicker and thick solution will take time to penitrate and till then that will remain at site of infusion like cyst , and it could be irritating and painy experience for you ... BEST OF LUCK for chelation and new changes that you r gonna try in your chelatio plan ...
===================
Best Regards
Take Care
Umair
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Hi buddies ,
hurrrraayeee , yep another wound , tis time i was openeing a syrup's seal and that was made of tin like steeled seal , that cutted my thumb's upper area very deeply and bottom are slightly ... upper area was as deep as i tried to clean that with spirit and tried alot but cant clean the cut tha is very deep , yup i cant use my thumb anymore and its my right hand , just thinking how i will take my meals ( spice will hurt it more ) eyyyyyyyyyy , very frustrating , i m consistantly getting hurts wounds and etc etc .... :banghead :frustrated dont know wat to do to avoid getting hurted ...
Best Regards
Take Care
Umair
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Get some quality sleep, nice and long... :wink
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that happened just before dinner when i was opening up the syrup i have to take before meal , and its second time when that syrup's seal marked a couple of cutts on my thumb , i dont kno how that happen's but .......... awe both time the cut were very deep .... , yeah i think i have to sleep for a little long to get out of frustration , ...... it wil be settle down soon , i hope ....
Umair
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Due all those infusions in my hand/arms I became both handed. I can't only not write with right. Umair, I suggest you are going to do what SF told you to do! :biggrin
Si, I will rest in the car tomorrow morning. :wink I got my luggage packed, dad can bring it downstairs. It is pretty heavy, but I got the bed stuff and towels. Oh jee, I forgot my pyjama... :wah Now I must do my hand bagage. (Oho, forgot my calcium/folic acid...)
I am searching for a present I get. It's a cd of the tape we had for many, many years. I will search for some songs when I am back and share them with you. They are funny and neat songs.
Btw I have for many, many years infusions in my feet!!! Why? My wanted to keep the veins in arms/hands alive a bit longer.
Ok, I will tidy up the house and don't annoy you any longer.
As for your cut. You don't need stitches?
:hugfriend
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Umair,
I am sorry to hear about that,but remember when opening such syrup bottles,you should put a piece of fabric on the cap,that way it won't hurt you.
Zaini.
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Dore,
Thanx for your concerns and sugestion , ... i m here again to spend a few minutes by sittting bcoze i just ate Nigella with honey and now ii have to sit for a few minutes , after that iw ill be sleeping again :grin ... hey , where did you got this words of Urdu ( oh jee ) good attempt ....
Best of luck for your vacation/holidays and dont forget your medicine ... making a list of things that you hae to take with you will be better to not forget anything ...
As for your cut. You don't need stitches?
noop , although its a deep cut but its not long and opened to get stiches on it ... i hope it will heal soon ... i was frustrated coze these things are happening to to me time-to-time ,...
almost 8-10 days ago, when i was on IV desfferal, i was filling ( or mxing ) insulin , insulin syringe slipped to my hand and i dont know how that pricked i my left hand, that hurt's soo badly and hanging at my left hand when i was taking out the swab to put on the accidently poked site .. that bleed fastly as well but bleeding stopped soon ....
after that, 3 days ago i was making desferal to replace the empty sryinge and during that 10ml syringe's needle struck badly in my left hand smallest finger , that start bleeding but controle earlier .. both accidential pricked sites are still aching and then now right hand ... this is soo frustrating na ..... and then slipping scene , ....
all this is very frustrating and happening cosistantly to me ...
Best Regards ( i need )
Take Care
Umair
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Zaini Sis ,
Thank you sis for a good sugestion , i usually follow this but last night i was in hurry to join my family on dinner table that's why i forgot to follow this precautive measure .. once again Thanx sis , i will keep it in my mind for next time, when open the seals of my medicine ,.. Good sugestion Thank you sis :thumbsup ...
Best Regards
Umair
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Umair,
I am sorry to hear that you have had another incident. I hope that it heals very soon. I think Zaini's suggestion is a good one and that it should help you to avoid such injuries in the future.
Take care,
Sharmin
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Sharmin,
Thanx for the regards :)
dont feel sorry for this all, its a part of life ( i think ) injuries make's the man perfect ( instead of practice ) hehehhehe :teehee i think this is why i m geting injuries time to time , to learn the lessons ( that how i can prevent these injuries ) hahaha .. yeah, definately, i will follow zaini's sugestion , that is super one :thumbup ....
Best Regards
Umair
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Hi ALL ,
Latest CBC Report 17 March 2009
Test Normal range Result
[Hemoglobin Haematocrit]
Hemoglobin 13.7 - 16.3 ng/ ml 9.5gm/dl
Haematocrit 41.9 - 48.7 ng/ ml 28% ng/m
CBC
RBC 4.5 - 6.5 3.24 10E12/L
MCV 76 - 96 89.2 FL
MCH 26 - 32 29.4 PG
MCHC 32 - 36 33.0 %
WBC 4 - 10 13.0 x10E9/L
Neutrophils 40 - 75 40 %
Lyphocytes 20 - 45 50 %
Eosinophils 1 - 6 02 %
Monocytes 2 - 10 08 %
Basophils 0 - 1 00 %
Platelets 150 - 400 810 x10E9/L
Latest CBC Report 25 April 2009
Test Normal range Result
[Hemoglobin Haematocrit]
Hemoglobin 13.7 - 16.3 ng/ ml 9.5gm/dl
Haematocrit 41.9 - 48.7 ng/ ml 29% ng/m
CBC
RBC 4.5 - 6.5 3.35 10E12/L
MCV 76 - 96 86.2 FL
MCH 26 - 32 28.4 PG
MCHC 32 - 36 32.7 %
WBC 4 - 10 19.1 x10E9/L
Neutrophils 40 - 75 40 %
Lyphocytes 20 - 45 50 %
Eosinophils 1 - 6 02 %
Monocytes 2 - 10 08 %
Basophils 0 - 1 00 %
Platelets 150 - 400 759 x10E9/L
wat does it show's ?? ....
i m worried about remarks they wrote "Lymphocytosis" ..... Andy and all otehr please interprate this CBC report ...
Take Care
Umair
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Umair,
As far as I know, Lymphocytosis indicates an increased proportion of lymphocytes in the blood. Yours do not seem to be highly elevated. As far as I know, having a higher number of lymphocytes in the body is not a problem itself, but if highly elevated it may be indicative of another problem - such as infection or illness. Again, I don't think that your levels are that highly elevated - has your doctor commented on this number? What do Andy and the others think?
Sharmin
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Yes, i do agree with Sharmin. Usually this indicates that there is/was some sort of infection.Usually the levels will be back to normal again. It happened with me several times and i do believe that by the next CBC, everything will be back to normal again.
manal
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Sharmin ,
you're the first who replied , i jjust have posted this report and waiting for Andy's reply and other's too ... Thanx for reply :thankyou2
Manal ,
Thank you as well for the reply and clearifying that its not something to worry abt , i gave blood sample just an hour before my last Tx on Saturday ... as for infection ??? yeah , i got it i had Fever bfore Tx and at the time i gave sample ... got it .. Thanks GOD i m Safe and nothing to worry , aahhh .. shuh.... :whew ....
Thanx alot to both f you :grin ... Thank you very much to solve this , i was worried abt this ... but now i m happy :happydance ..... :thankyou2
Best Regards
Take Care
Umair
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Umair,
I also agree wtih Sharmin and Manal that if you have elevated WBC and especially the Neutrophils that would be indicative of some sort of infection. Your Hg and hematocrit were a bit down and that can also result in slight elevation of WBCs.
I really think and hope that your levels will be better next time. if, however, you develop symptomes of infection like fever and chills, definitely, consult your doctor.
You guys also know about the swine flu going around? So, everyone, please be extra careful these days and let your doctor know of any flu like or infection like symptoms right away. The drug, Tamiflu, is only good if given within 48 hrs of onset of symptoms
Take care Umair & everyone else!
Regards,
SF
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Thank you for that information SF. I hope that everyone stays safe. It is a little scary knowing that this flu is lurking.
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Umair,
The high white cells could be related to any recent cold or infection or could even be a result of being anemic.
http://www.nlm.nih.gov/medlineplus/ency/article/003643.htm
A high number of WBCs is called leukocytosis. It may be due to:
* Anemia
* Infectious diseases
* Inflammatory disease (such as rheumatoid arthritis or allergy)
* Leukemia
* Severe emotional or physical stress
* Tissue damage (for example, burns)
These lists are not all inclusive.
Most likely this isn't any concern, but it should be compared with the next blood count to see if any trend develops.
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HII ALL ,
Thank you for taking time to Reply and interprating Test Reports .. :thankyou2 ..
===================
Andy & SF ,
Thank You for detailed Reply and for confirming that its not a big thing yet to worry about , and for the advising to "wait and watch" ... i dont know why but my Platelets has been always higher than normal level "ALWAYs" in previous posts of this thread you can see the trend ... anywayz , its good to know that i m on right track and doing well .... & Thanx Andy for the link ...
===================
Sharmin , at this tense moment, when influenza is creating trouble i wanted to send here a lil joke from your post to chill down the heat but its really a serious topic soo that's why not gonna do/say that ..
===================
is Pakistan also at risk of Swine virus ??? ... directly from this virus without any infected person to reach here .????
NEWS : yesterday, there was a high alert call by Lahore's International Airport Authority bcoze 2 passenger of Mexico were boarded from Canada for Pakistan ....
i think, our Warm climate is defence llayer for us from these kind of viruses , m i right ?? its just a question to know about , please reply ...
Best Regards
Take Care
Umair
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s Pakistan also at risk of Swine virus ... directly from this virus without any infected person to reach here .?
Umair,
With people traveling in every part of the world,it can go any where :( and a passenger was rushed to the hospital today from Lhore international airport because he had flu and fever :scared.May Allah help us all.
Zaini.
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Umair, I have posted some info that may help answer some of your questions about the Swine Flu under that thread.
May Allah help us all.
Ameen!
All the best to everyone! Stay Safe!
-
Zaini,
wat was he doing here ( That Passenger ) ...??? // .. not good na !!... bt its ok , he'll never come back to Paksitan after visitng our hospitals and will never want to come here again ... in the way he will be treated here , he wil be soo affraid of coming here again ... hahahhahhaa .... just kidding , facilities are not that much bad here in Pakistan ...
=========================
Thanx SF , for taking time to answer , i m gona check that now .... Thanx alot ....
May ALLAH help us all and keep us in HIS safety to all kind of viruses diseases etc..etc.../and bad thing .... AMEEN
Best REgards
Take Care
Umair
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Thank you for that information SF. I hope that everyone stays safe. It is a little scary knowing that this flu is lurking.
You're welcome Sharmin, and thanks for the nice wishes! :hugfriend
Take care,
SF
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Umair buddy hope you are doing OK haven't seen you in 5 days
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I was thinking the same,i hope he is well.
Zaini.
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Umair,
I hope that you are doing well.
Sharmin
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>I hope you are doing well<
-
Where are ya buddy, Umair? I hope you're auright...
-
Just had a brief conversation with Umair (you know how brief he is when it comes to conversations, right Umair? :wink :rotfl j/k)
He is doing all right, just having problems with his PC and he being lazy not doing something to get it fixed :biggrin Instead he is playing cricket these days with his younger bro which is good for him.
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Oh yes, it's better to play cricket with your younger brother, Umair! I hope you really, really enjoy it!!!!!!!!!
Have eight double fun!!!
Best wishes, Dore
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Enjoy it my friend, but don't be late :wink
manal
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I am happy to hear that Tariq - thanks for letting us know :) Yes, the fellow only engages in 'brief' conversations :grin
Glad to know that you are well Umair, have fun playing cricket!
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Thanks Tariq for letting us know about Umair.
Umair, have fun, but don't forget us completely.. :sadnope I hope you get your computer fixed, soon.
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Hi ALL ,
As Tariq said i was busy in playing cricket with my younger bro when my Pc was troubling , and were lazy to fix it , it was a little cmplicated probleme and 1 out of 2 RAMs was toubling , and for the 1st time i went to It Plaza to give CPU to exxperty to fix this probleme ... they told me that it was Ram's prob and then replaced that ... Thank you all for your messages , i still remember you people and cant forget you people , it doesn't matter how long i remain away from the site you people are always in my thoughts and prayers ... thank you for you buddies ...
Brief conversation :
during the cconversation once i had thought that Tariq bro want to end that up but how can i let him go without listeneing complete story hahahha :rotfl and where he can hide himself to umair ??? :rotfl i wanted to stretch the story a little long but then i decided that its enough for that time hahahha ....
okey G , cutting and shortening up the story ,... i m doing fine and now probleme is fixed ..
Best Regards
Take Care
Umair
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first of all , i want to say that after alot of this :lousycomputer and that :computer i m back again to annoy you all , that was really boring and :banghead :frustrated time .. but finaly its settled like :laughspit..
and secondly :
Post after Post , just to say that , i dont want to think my pic .... so, heeeelp meeeee, May-Day its May-day , 13 have done their job and 9 more needed :grin .....
Edited : if i failed to get 22 commetns within 22 days , then i will start thinking....... you know i will start thinking wat
i dont want to think buddies :boredom .... its a difficult job :scratch .... ... ( Andy , dont worry , i m not gona say that again :grin hahahhaha )
Best Regards
Umair
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Off topic:
I hope you don't mind I am posting this en public.
Umair, you are always positive. How do you do that? I mean you never really post here something that is written in a depression mood (like I do). I can not really express this feeling into words. But I guess you know what I am trying to say.
I am curious about the way you do that.
Kindest regards, Dore
Note: Other members from this community have this positive (or optimistic) way of life was well.
P.s. I could not find a topic where this fits in.... We can also continue this by email.
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Dore,
I hope you don't mind I am posting this en public.
It's OK , Dont worry ...
Umair, you are always positive. How do you do that? I mean you never really post here something that is written in a depression mood (like I do). I can not really express this feeling into words. But I guess you know what I am trying to say
hummmm, I think Bcoze my Blood Group is B+ve Hahahaha :teehee :rotfl :rotfl :rotfl :happydance :biggrin :yes :laugh :grin :grin
Okie.... okiey ... now serious .. coming back to your question ....
humm mmm.. i m gonna try to answer this if i can ..
the way i think " why to cry for the thing u can't change by crying and why to worry abt the thing you know that's not in your hand to change that "... soo always take up the funny side of everything ,... like a few time my cousin said to me " you look's younger than your age budy, why dont you growing u faster " my reply was a line fromm an Ad " its fun to b young buddy " and i have mentioned all that in other post :
HI all i know that i m too much late to reply on this topic its .. i m a new meber n i found this site recently a few weeks ago ........... i cant stop my self to sending a reply on this interesting topic .. bocze several time my cousins who r younger than me said to me that ( umair bro grow up buddy ) ( here i want to explain 1thing that they r so caring and they do some extra care of me ) ............ everytime i answer's to them like this ..
1 ) wat did you got by growing fast ? ( in punjabi style " teno ki milya tezi na wada ho kay?? " ).
2 ) is ur younger cousins 11-15 let all of u play with them obviously NO but they dont stop me to play with them and i also play cricket in your team HAHAHHAHHA .
3 ) YOU ARE GETTING OLD BUDDY & I AM QUITE YOUNG HAHAHHAH....
4 ) and u know that wat impersiion left at some1's mind when when i discuss something to him " HE IS MUCH MATURE THAN THEIR AGE FELLOW " .
i enjoyed these kind of comments abt me hahahhahahahhahaa
when you can't change something that annoy you or something that is going wrong with you then only give your best and then leave that to GOD , dont think about that ... if i will write something in depressed mood will that ease my pain ??? will that take up to wat i m going through ?? absolutely NO ... ... try to find the possitive side of everything. ... and try to live the life and try new issues of life instead of sticking to one issue of the life ... its funny to always complaining for wat you dont have a and forget to say thanks To your GOD for wat you have ... only onething e.g if HE take's up only your memory then wat you can do ?? nothing , so say thanx to him and be happy that you have a good mind to remember your routine's To-Do List ... look , we have pair of hands, eyee, eare and legs , wat can we do if HE take up one of them , Thanx GOD , HE made us complete Human being .. and when you think this way you will never feel that your self un-lucky ...
i think i make sense and explained it clearly ... Anymore question ??? ... :grin .. and please dont mind and ignore if you dont like anything in this post or let me know if you want me to edit something to this post ...
Best Regards
Umair
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In Addition :
Everyday when you wake-up just think, Feel amazed and wondered and say to your self that " OMG , i m still alive , oh Thanx GOD you Guaranteed me another day " and feel lucky to have another day ... it will leave a good impression on your day and you wil be feeling happy all the day that you got something .... try this ...
Best Regards
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Good attitude bro :thumbs Positive attitude is the key to healthy and happy life.
Zaini.
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Umair,
Thanks for sharing this with us :) I think good attitude is something that all thals need to get in touch with - and us parents too!
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Your Welcome Zaini & Sharmin .... thanx for encouraging the way i think :grin :idea
Best Regards
Umair
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I know how we can call this feeling-->Frutrating! That's the word I was looking for. So far as I know has nothing been publiced about pyruavte kinase deficiency in 2 or 3 years. The king doctor of my anemia died on 4th October 2008. I really was in shock when I found that out. I always planned to meet him some day, I think he was located in Oakland as well, although the last years he spend in Tennessee. You see, I always find a lot of interesting articles on the net, but not specific for me. Don't forget, they only did 1 bmt by a pk def. patient so far. One!! A 5 year old boy from Vietnam, and all the other members of the family had.... thalassemia! Bmt was done in Vietnam as well.
The good thing of today:
My tx went well. I had some pain (I still got), but there was no need then to take a little nap in the car!
Thank you,
Dore
p.s. A Dutch men did obtained his doctorate on thesis on pyruvate kinase deficiency. I was part of this. He had great plans, but they are laying in the fridge at the moment.
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Dore ,
A Dutch men did obtained his doctorate on thesis on pyruvate kinase deficiency. I was part of this. He had great plans, but they are laying in the fridge at the moment
&
The king doctor of my anemia died on 4th October 2008
Sorry to hear that ...
I know how we can call this feeling-->Frutrating! That's the word I was looking for
if you're saying this abt me then i want to say here that you're wrong.. i m not frustrated abt it... i m happy to wat i have and to my life ... you can't fight to any of your probeleme if yu are frustrated .. n i m fighting , .. in frustration like feeling you can only give up and cant fight ... i just wanted to clear this up that i m not frustrated ..... and i hope never will be .. i just dont think abt the things not in my controle. ... i m enjoying life and the health as well giving the health problemes a tough time when those come to take me down ... my way of thinking is " i have given my best , now let's see wat's gonna happen next , wat future hold's for me " ... not Frusttrated ... you're wrong at understanding wat i said and at judging the way i deal's with life ...
The good thing of today:
My tx went well. I had some pain (I still got), but there was no need then to take a little nap in the car!
Good to hear that Tx went well , and best of luck for the rest of that stuff ..
Best Regards
Umair
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if you're saying this abt me then i want to say here that you're wrong.. i m not frustrated abt it... i m happy to wat i have and to my life ... you can't fight to any of your probeleme if yu are frustrated .. n i m fighting , .. in frustration like feeling you can only give up and cant fight ... i just wanted to clear this up that i m not frustrated ..... and i hope never will be .. i just dont think abt the things not in my controle. ... i m enjoying life and the health as well giving the health problemes a tough time when those come to take me down ... my way of thinking is " i have given my best , now let's see wat's gonna happen next , wat future hold's for me " ... not Frusttrated ... you're wrong at understanding wat i said and at judging the way i deal's with life ...
Umair,
Actually Dore was talking about herself.
Dore,
We all get frustrated at times,that's life,but then we have to pick ourselves,dust off and go on,that's also life and it goes on.
Zaini.
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Thanx Zaini,
i was wondered that where i gave the impression that i m frustrated .. Thanx alot
@ Dore ,
please dont mind, if you dont like something in my last post then just ignore that ....
Best Regards
Umair
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I don't see a reply to this but it may have been answered already, but an NO inducer is anything that helps to increase nitric oxide levels in the body.
I knew I read somewhere about nitric oxide. The information doesn't fit here, but otherwise is it homeless:
The purpose of this study is to better understand S-nitrosohemeglobin (SNO-Hb) in transfused blood of extremely preterm infants. The long term goal of the project is to identify variation in the SNO-Hb between packed red blood cell units, and between and among individual preterm infants pre and post-transfusion. Duke investigators are developing methods to replenish SNO-Hb, which, if successful, would improve RBC deformation in addition to providing a vasodilatory stimulation to hypoxic tissue, and lead to a randomized clinical trial testing treated vs. untreated RBC transfusions in extremely premature infants.
AIM 1. Measure the Total Hemoglobin (Hb)-bound nitric oxide (NO), Hb [Fe] NO, SNO-Hb (a calculated value = (total Hb-NO - Hb [Fe] NO) in blood to be transfused in extremely preterm babies, and in samples pre and post- transfusion from the babies.
Hypothesis 1: Measures of NO and SNO-Hb will be low in blood used for transfusion in preterm infants and will be decreased in the post-transfusion samples from the infants compared with the pre-transfusion samples.
AIM 2. Collect clinical data about study participants, including oxygen saturation and measures of perfusion pre and post-transfusion.
Hypothesis 2: Measures of perfusion will be reduced by 20% post-transfusion in extremely preterm infants
http://clinicaltrials.gov/ct2/show/NCT00787124?term=blood+transfusion&rank=45 (http://clinicaltrials.gov/ct2/show/NCT00787124?term=blood+transfusion&rank=45)
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Umair,
Hope you are doing well :) .
Zaini.
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I talked to him yestarday. He had high fever and severe pain in thigh (subq site) the day before yesterday and has taken dose for malaria. He said he used distilled water from a new company for DFO which possible caused the pain.
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I had the same question. I hated to hear this news. I wish fast recovery! Keep us up to date, Tariq.
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Hi Umair
Get well soon. I wish you a fast recovery. Take care
Jade
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Tariq,
Thanks for letting us know. Umair, I hope that you feel better really soon. Have you seen a doctor? I hope that you do not have an infection. Is there any bruising or swelling at the site?
Take good care Umair,
Sharmin
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Umair, wishing you a speedy recovery, don't be late :hugfriend
manal
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Umair is feeling better today, no fever so far. He had severe vomiting last few days but now things seem fine.
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Wishing you speedy recovery dear bro :hugfriend
Zaini.
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Hi all ..
i m back, but don't know perminantly or for a short time . bcoze i m still feeling weakness, althouggh i have recovered a lil bit bu weaknes is still too much .. when ever i move my self i feel tiredness , even if i pull up my hand and put it on handrest of chair that tiny moment is making me feeling tired .. feeling realy bad after experiencing problemes one after one, i though i felt this many times but this time felt this as well like something is gonna happen, bcoze heart beat and waves was too high and was jolting my head, it was feeling like my head is gona blow up .. i was feeling soo tired and confused and yeah dis-hearted and sad , i still soo much depressed to think that when-ever my health improve's suddenly an episode like this come's in scene and erased everything... i m soo much tired and dis-hearted to all this and even won't to take my supplement, i m feeling soo much un-lucky, ..
wat happened to me ??
it start's from tuesday , i went for Tx... Tx was fine , then i went to pharmacy and asked them for distile water that i use . but those one wasn't available and salesman said he will try to order soon .. i had to start chelation bcoze it was TX day so chelation was neccessory to me at that day , so i bought another company's distile water . came back home, i won't to turn on chelation bcoze i was feeling tired but i had to so i decided to start and the i mixed desferal and started chelation.... on wednesday 2;00am when i changed the syringe i felt sumthing strange amy pump was beeping that injection is end and thats why pump's plunger cant move anymore , i felt this when i started first 2 desferal on tuesday but i ignored it and didn't understand wat's going on ...
to be continued , :grin
Best REgards
Umair
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Umair,
I hope everything will be back to normal very soon for you. Best of luck.
Have you stopped desferal because of that? I think you must until you recover. What did your doctor say?
Lena.
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wednesday was too bad according to many aspects . first i started feeling severe pain in my thigh and within 10;00pm i was feeling fever ,,, i ignored that all and thought that it is temporary and soon will go back ...
but on thursday 3;00am fever come's to 104 and pain was unbearable . i was feeling like paralized , i was unable to walk sit and it was even worst while laying on bed and it was not letting me to sleep. then i decided to put pump off but it was too late i think, that was on its peak ... fever was high and i was feeling its effects on my brain , unwanted and without an reason depression and weird discussions with my family ... on thursday near abt 4pm my father told me to start course of malaria's medicine and i obeyed and did ( remember since wednes night i hadn't eated anything) i took malaria pills and after that fever came down but another prob raised its head , it was stomach , vomiting and pukes after pukes even water was not staying inside all the night between thursday and friday spent doing puke and then friday as well .. here is sumthing that made me worried is , i saw fresh blood clots in a puke ... and after that at friday night when we went to consult to doctor he said never take malaria pills on empty stomach that could cause stomach disorder ( i heard the same for painkillers too from somewhere else that taking painkillers on empty pate could be harmful and cloud b a cause of ulcer ) .....
to be continued , ( i will rest a lill bit and then write more again )
Umair
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saturday , i fell much better , and slept for a long time after these three days of pain , i ate a lil dinner and thanx GOD this time no vommiting... but feeling weakness ,, its feel's like these three days squeezed out al energy to me .. feeling so bad and frustrated , i just came out of all these things and once again these thing jolted me very badly ... DFO site is bruised red and purpl and aching alot, still unable to walk ... sumthing is more depressing is since a long time i m suffering thorugh sumthing , no rest ...
at one moment when all this was happenning to me i was thinkking, i dont know why i m fighting this much hard .... i was feared that i will give up someday ... i was feeling realy tired , i wanted and there was no sign that it will heal up soon and i can get relaxed,.... i dont know why i was feeling so bad that day ....
i have been through alot of things that was more worsen than this one i went throughh recently , but dont know why , i dont wana fight anymore ... its more than 1.5 year since i m in state of agressive chelation and trying to keep my health FIT ,,, isn't it too long time ??..... okiey i dont wana write anything more and dont want to make this broken soul/spirit cause/ reason of breaking other's spirit of fighting ...
wat-ever i have said here doesn't mean that i will stop chelation and give up ... all that i mentioned above is my feeling in time i m suffering to a realy bad condition.. so plz i request to all u thals that dont even think of give up and keep fighting , its a bad patch on me and whenever it will end i will b a happy man and back to my routine mediicnes, treatments & specially chelation .. plz never went your hope down and be sticked with ur treamtents and chelation ,, hope that you people will have more n more brighten future than mine ......
@Tariq bhai,
Thanx alot bro for updating forum and answering most of questions on my behalf, i was realy unable to sit and answer those questions , condition was really soo critical and i was feeling tirednes too much bcoze of weakness .. thanx alot bro for all this .. May GOD bless you ...
@Zaini
Thanx sis, for regards and good wishes ,,, thanx alot for kept remembeirin me in my absence .. thanx sis :) ...
@Dore
i hate this too, Dore ... at-least this dont suit to desferal that do sumthing bad with a thal, ... in my case i this it wasn't desferal ( as first i thought ).. i think it was wrong site or i injected that in muscle instead of sub-q ... but now i m much better , hope that i will recover sooner than my own expectations , ,,,.....
@Jade ,
Thanx Jade, wishes of you all and prayers make me recover this much faster , otherwise prob was realy critical .. that alot, jade.. i alway need all of thalpals prayers . bcoze i the one who is lwayas in trouble, when-ever i get some super health and then a prob and back to skiny type of thals group ... soo i always need prayers , thanx alot ....
@Manal
thanx manal sis , i think i m late a lil bit , but i hope i m not too late :) , thanx sis
@ Lena
i imediately stopped pump and turn chelation off ( i did this on wednseday ). doc hasn't said anything abt pump , actualy i forgot to ask abt that , but since this start happpening the pump is off and wiilll remain of until i will recover completely.. thatnx for you wishes and sugestion ... Thanx alot :)
DFO site yesterday night it was mostly purple & a lil bit red and now its mostly red & a few purple marks ( and skin is hard since i started last DFO session and still hard and aching alot eeeeeeeeeee i dont like ache ) .. i tried several times to come on forum but didn't do that bcoze i was start feeling tired very soon in those days ( mayb friday night and saturday )... hope that i m not too late ..
i m Almost back to forum, i hope to get back in form realy soon :wink i think its enough for this time
hummmm.. but now i m up again with more power/energy i have to achieve my goal of better health and i will achieve that INSHA-ALLAH ...these lil thing cant take me down ... i want you people to please be faithful with your chelation plans and keep your Hb maintain other wise life will be a lil hard for you ... start chelation today ....
Best Regards
Take Care
Umair
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Umair,
Two things. First, make sure the water you use is absolutely safe. Second, it's time to stop the aggressive chelation. Time to be like your fellow thals and just do normal chelation. The progress has been made and it's time to give your body a break.
Glad to have you back but please take things easy until you're feeling good again.
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Umair,
It is better when you suffer from infection, to stop desferal completely as some viruses are iron-friendly and together with desferal the infection could turn out very serious.
But what does "aggressive chelation" means in your case and what is your ferritin level right now?
Do not let yourself down, everything will come back to normal.My best wishes for a quick recovery.
Lena.
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Umair,
I am so sorry to hear what you have been through. I know how awful you must feel, and as Andy has said maybe it is a good idea to give yourself a break - and chelate regularly because your iron levels are at a good level now. I hope that you feel better really soon, I am so sad to hear what you have suffered.
Take good care, my thoughts and prayers are always with you bro,
Sharmin
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may Allah grant you shifaa e kaamilaa umair...get well soon
emby
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Umair you are in my prayers :hugfriend please take it easy on yourself my friend
manal
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Hi All ,
its really strange , yesterday I was feeling like all that i went through is over but now i think its not .. i m experiencing back pain now and its almost unbearable ... last night when i checke my temprature , it was 96F , its pretty strange thing (i think its a sign of weakness).. its truly a bad time on me ,, hahaha ( do u people remember : when umthing look's out of controle to me then i just laugh and think LET'S SEE WAT'S GONNA HAPPEN HAHAHA .... it is one of those kind of situations ..)
okiey coming toward's reply :
@Andy
as i mentioned somewhere a lil earlier that my Dr told me to reduce desferal and use 3 desferal on Tx day 2hours before starting Blood transfussion and till 8hours after Tx end's up ( nearly 13 hours mayb ) ....... but i wanted to keep my previous routine bcoze the Fe report i had at that time issued on may 25 , after that report my desferal stock got finished , and i buy's desferal from another city , so i were too late to get another supply , i always were late to remind my father for desferal ( i missed 2 saturdays when i can get that , anyways) , i got another supply on 3rd saturday but it was late and i was hesitating to start DFO again , in time ferriprox was near to finished-up ,
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Desferal's story
i had only 7-days supply my father sent pay order and demand draft to company i order's ferriprox , there was a prob with my demand draft the person i always write his name under ATTN mark was transfered to somewhere else and a new person was at that post , so draft wasn't passed to him, we got to know it aafter a week whenn we caled them , we sent another pay-order and demand draft,,, but once again bad luck , it was AUDITs month ( new finacnial year was near to start and companies was preparing their self to send their returns for the past year and yearly planings, calculations all that kind of stuff was on) so they was busy in that and that's why they were a lil late in dispatching ferriprox.... the person we reached 2nd time was a nice person may admin of that branch he personaly took interest in it and he find's out my previous draft too and then he dispatched ferriprox ASAP, and then finaly we got medicine.. mayb all this scene with first person took 12 days and 2nd persons done that all in 2-3 days ( remained days are those when we dont know that there's a mistake in our draft , and our draft hasn't reached its destination)..... all this strugle took 17-19 days, means that 2 weeks without ferriprox as well ..
when i was off to desferal for and then ferriprox finished up too , my father start saying me to start desferal but i was hesitating but after 35 days i started desferal again , but when i visitied my doc she said to reduce it , i thought i weer soo much irregular with my plan , and since a long time i weere away of any kinf of chelation so i must continue my plan for 3-5 times, that's why i were still agressive .. but now i think i must have to stop being agressive and have to come on maintaince dose .. n i will .... wat my doc told me is 9 a day ferriprox and desferal on Tx day only from 2 hours bfore Tx to 8hours after Tx , its good plan and i will follow it now ......
@lena
Thanx alot ,Lena ... Thanx for the wishes , according to my last report my Fe is 1091ng/ml ... and yeah , desferal is off for a while , but i dont know why i start loving the taste of desferal hahhaha :rotfl :rotfl j/k... agressive chelation = to mad about chelation and i have been like this throughout the year ( april 2008 - 25 may 2009 ), but now when everything is coming to fine levels , i agreed to you i have to stop this agression for Fe .. Thanx alot for advice ,, (all story is writen above )
@Sharmin
Thanx alot for the prayers n wishes , its nothing new to me as u all know the stomach aches series and then malaria then sumthing was happened in march or april , so i m trying to used to these things but these things are really soo bad to bear na ..
@ Emby
Ameen, Thank you for the prayers and wish ,, i think,,,, no i m sure that i realy need these DUAs n Prayer n Wishes .. please remember me in your prayers .. Thanx alot again :)
@ Manal
yeah Sis , i wont to b more strict and dont wana b more hard that i can try everything ,, i will b more mercifull with myself and soul and try to avoid any prick if ican , but 2 pricks daily are neccesory for insulin , i cant promise those whether i want but i cant forget those two , bcoze those have ability to remind me instantly that i have forgotten them bfore meal :) ... its seems like life is full of commitments and give n takes ... but its ok let's wat's next for me .... Thanx alot Sis for remembering me in your prayer and for the wishes ,,.. thanx alot ..
To all of you who were there with/for me in this sessions of this thread , i wana thank you all to the bottom of my heart , bcoze their presence made me feel happy, relaxed and feel my head much ligter ,, i have written alot of things in it .. so i want to say sorry if my words hurts or showed any offence to someone ... Thank you all for being there for me ... :thankyou2
Best Regards
Take Care
Umair
a lil note :
headache a lil bit & backache killing me............. if i can write that much in severe aches and this kind of condition that just imagine wat will limit of my ability to type/write in a good healthy condition .. sigh .. i never believed on this ability whenever anyone told me that i can write alot ...
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Andy, we alll use Nestl's drinking water here at home , and i think there's no doubt abt Nestle's pure life drinking water ...
Dear Umair,
Andy was talking about distilled water you uses for desferal,please take good care of your self .My prayers are with you. :hugfriend
Zaini.
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Umair,
you are such a tender person! I think you have earned the love of us all. Our thoughts - if I may speak on everyone's account - are with you. You deserve every happiness in the world. Keep on with your fight and life will reward you.
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Hi All ,
Today i had really unbearable severe back pain after lunch (that i mentioned in last post) after a few hours pain got more worsen and start spreading to some joit and was growing strong too ... by 5;00pm my ankles, knees back , shoulders, elbows and wrists was aching very bad , this pain was unbearable for me , and for the first time in these 6-7 days i was near to start shouting or cry .... i didn't shout bcoze whenever i tried to talk or call some one for sumthing back ache waved to that act .. soo i decided not to speak or call someone .. then i cal my Sis when she was nearby me and said her to bring a glass of water and a spoon and then i took Lbrufen and after 40-50- minutes pain started going back .. but that pain was really soo bad.. backache has started again a few hours ago and then knees and now ankles ... dont know wat's happening to me .. i dont know how long all that take to go back ....
@ Zaini
Thanx zaini Sis for pointing this out and telling me about my mistake . i was a lil confuseed too that how can we relate desferal n drinking water ... then i thought "Andy must be talking about it bcoze of backache Case.. and i thought mayb he's gonna say that water could create gastric probleme and that could cause back ache " ... anywayz thanx for telling me, i have edited that post ....
( woops i red last few posts carefully and found that i mixed up wat was on my mind and wat was on forum, yeah realy, when i was writing last post i was having severe ack pain and i mixed up the reason and answered as he is asking about my back pain bcoze that back pain was occupied my brain at that time ... i have corrected the mistake )
Andy, that was not waters fault, i remember that when i prickeed myself and started DFO my pump was beeping again n again like it reacts when syringe stops ( in the end when syringe got tightened up and then there remain no space to move ) but this time it was beep in starting and again and again i tok out the pump from my pocket and saw that plunger of pump wasn't moving smoothiy , i expereienced the same thing many times while injecting insulin when insulin syringe pricked wrong then that behaves like this too ( cant move until i force very hardly to insulin syringe , and after that a lil pain and a small bruise ) i think samething happened to me with DFO too ,i selected site for DFO and just pricked that without checking again n again as i do whenever i plan to start DFO ...
@Lena
Thanx alot Lena .. thanx for compliments, fighting since a long time , and still fighting wat else can i do ??? nothing .. wish u all the best .. lots of regards for you ...
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Best Regards to all of you ....
Take care
Umair
i dont know why , i dont have habbit of proof reading :grin
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Umair,
Is it possible for you to see a chiropractor? The way this sounds, you may have a pinched nerve in your back. Also, how low does your Hb level get before transfusions?
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Andy,
i dont know about Chirpracter , and also dont have any idea where i can find them, and dont know if its available here near around me or somewhere oout of city or not , so i think its a difficult job to find a practioner without knowing if he exist or not ....
About pinching nerve :
Andy, i m expereincinf this (backache) after a long long time may i last experienced it when i was suffering to wheelchair ( the time in age of 17-20 when alll that wheelchair and other things I experienced ) ... so i dont think that its related to that , it was somthing related to meal , its started after lunch , but when i took lbrufen it went off and then cam back after dinner ( but this time intensity was lower than lunch one ) ... so i think it was something related to the meal i think meal was a lil bit spicy that's why :-\ mayb ... ) ...
HB Level :
my pre-Tx Hb on my last transfussion on 07-july-09 was 9.3 , n i think its not too bad , i got a big n fresh packed cell unit (RBCs only) which was bleeded on 03-july-09 , i think it was a good bag .. so no prob with blood tooo ... you can say that the only reason is my fate hahahaha that had finaly found me and punished me alot hahahha ... i hope someday i will take revenge to my fate and start riding on it too ....
Today's probleme is my left knee , which is behaving very strangely , i have to pull left leg and feeling gap in knee hahahaha , Thanx GOD , today's prob is only left knee nothing else more :happydance
Best Regards Buddy , oh yes how is your eyez now ???
Take Care of your self as well buddy ...
Best Wishes
Umair
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Umair,
Although i did a lil bit of searchin g for chiropractors in Pakistan and i found this,
http://www.phonebook.com.pk/dynamic/search.aspx?k=Chiropractor&l=Pakistan&SearchType=kl
I am not sure the numbers would work or not,if this phone book is up to date or not,but when you are feeling a lil bit better,i think you should try giving them a call,and may be it will help you.
My prayers are with you.
Zaini.
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Zaini,
Thanx alot for searching and providing the names links and all info about chiropracters , all are ot of City (e.g lahore and rawalpindi ) but i will try to reach lahore one'z if i feel that i realy need it, otherwise going for routine visit of Haemotlogist's clinic ineed a complete plan to move and then another one... it will b difficult .. i have saved this link and will try to reach them when-ever i need it .. Thanx alot Sis :) ....
Best Regards
Take Care
Umair
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Hey,
I hope you feel better now. Good luck with the chiropracter. A family memer of me went once, and after the session the person thought for more than a week that the head was falling from the body, lol.
This one is for you Umairr:
http://www.youtube.com/watch?v=Be6jlCuMvVQ (ftp://http://www.youtube.com/watch?v=Be6jlCuMvVQ)
All the best, Dore
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Dore,
i m fine now, and hope that you'll be alsof ifne and and hope that your trip was gr8,,, Thanx for the reply and wishing me uck for better health ,, all that solved a week ago , nad now m feeling all-right , than GOD that it soolved without seeing chiropracter ... Thanx for the link though it is not working that video has been moveed from youtube due some reasons although thanx for searching and sharing sumthing related to this thread and the last few posts of mine .... :) .. hope that you're feeling fine as well , and nno more experiencing swollen feet and anyother probleme likeor related to Tx ... :)
Best Regards
Take Care
Umiar
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Umair,
I am glad that you are doing well. I have been seeing a chiropractor since my accident and it is really helpful. He has shown me a lot of stretches and excercises that I can do on my own.
Take good care bro,
Sharmin
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Sharmin Sis,
its nice to hear that Chiropractic worked for you and you got benefit to seeing a chiropracter .... i will keep in mind all this if i got the pains again ... BTW , its nice to see you back in action on forum :) after Vacation ( r u back home now ?? ) ...
Best Regards
Take Care
Umair
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Yes, I am back from my vacation. Getting ready to go to Oakland next month for lil A's one year follow up on the trial.
Sharmin
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Something that needs to be mentioned about chiropractors is that thals do need to make the chiropractor aware that their bones may not be as strong as normal, so the chiropractor needs to take care when doing adjustments, as they do with older patients.
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@ Sharmin,
i hope you enjoyed your vacation , and best of luck for Lil-A's upcoming yearly check-up/folllow-up Trials ... i hope Results will b super fine as lil-A's progress were out-standing through-out the year and we witnessed his progress in sports, Fe levels and all that kind of stuffs and every thing ... May GOD bless him with the best of HIS blessings ...
Lots of Best Wishes
& Best Regards for Lil-A
@ Andy ,
Thanx Andy for mentioning this really important ting and rasing this point to avoid any kind of damage .. i will keep this all in my mind when-ever i will decide to go for Chiropracter option, but this fact made me scared of doing anything to my bones too , adjustment of bones sound's sumthing a lil bit u know :-\ ... Thanx alt buddy :)
Best Regards
Take Care
Umair
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It is very safe in the hands of a competent chiropractor. They regularly adjust the elderly safely, so they do modify the techniques for the patient. I would suggest always getting a recommendation from someone you know, so you know in advance that the chiropractor is good.
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Andy
:happyyes :) , it's sumthing that make's feel beetter abt it , i will definitely find a super one chiropracter if i feel that i reallly need to see a chiropracter , that backache was temprory and after that day i never experienced that , and i think it has been a week when i had that ... so i think tat was a temprory pain bcoze of sumthing was on those days ( that could bcoze weakness or anything else that i experienced those days ) ....
Best Regards
Take Care
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Hahaha Umair ur breakin the record here how many countries did u have BT in so far? loool :rotfl
thats awsome when ur done give me the rating might wanna travell I herd Dubi's was good
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Breaking Records ??, Countries ?? , BT ??? ... didn't got it :-\ :dunno ...... i think i didn''t get it right , please explain if you can :) :grin you know m very much bad at understanding the hints :grin ...... hahaha LOLzzzz i m unable to count the countries :grin :rotfl ... ... how can i count the countries out of 292 replies :) difficult Job :grin ...
i was just kidding above in this post :grin .... i will definitely share rating with you once i visit all these countries :wink
seriously wat i can reply to this post , i dont know wat to say , the only thing walking here to there in my mind abt it to say geeeeeeeeee :grin :grin :grin :grin :grin :grin
Best Regards
Umair
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loool funny guy :rotfl
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Edited : ( i've edited my last post, i mentioned this several times that when-ever i read my post that mean's different to me thats why i edited that ,, and edited this post too :grin i cant assure you that i will not edit this post again after reading it next tim e :grin )
======================================
somebody mean's to funny guy to good one someone say this fir mad onez , ....
i dont know which one funny guy, i m ....
1) a good one funny guy ( e.g :wavey :grin :smiley :high5 :yahoo :laugh )
2) or a mad one funny guy (e.g :nana :happydance :yap :run :raspberries :frustrated ) .....
( Umair = always confused Guy :scratch :-\ .. )
( i m bad at understand hints n clues and sometime i didn't understtand the simple and clear sayings too , as i miss-understood the question of Andy about water :grin so explain it plz plz plz plz plz ...... ) .....
Best Regards
Umair
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Funny as in a good way :biggrin
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Thanx GOD i m in good onez :whew ... ( i thought that you'll make scene of this question :grin )
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woops.... forgot to tell i m going to hill area to spend a few days , i m going tere tomorow and dont know when i will back to home ... but hope that i will b at home within monday (May b... not sure !! :grin ) ... so enjoy as much u people can, u people have 3-4 days to enjoy , no more than that , only 3-4 days to not see any post with mistake and any weird stuff .... enjoy ur self ...
Regards
Umair :)
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Have fun Umair. I also will be away for the next few days but will have my laptop and will log on when time permits.
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Thanx Andy , you too enjoy you vaccation as much as possible .. but i will cutt-off to internet bcoze i cant take my PC there bcoze its desktop PC ( not laptop ) , so it will b more and more a trip than and a oppurtunity to come out of routine things and cutt off to all the thing i do here in my City , so wat-ever i m gonna do there ,will b totaly different and new experience in comparison to my routine .. so it will b great i think ... and also sumthing that i have to feel better , i mean sumthing to get myself busy in some new things to feel better ... Best of luck to you too, Andy ... and wishing you a super fine and super joyful vaccations :thumbs .. Take Care !!!
lots of Best Regads
Umair
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Enjoy both of you :wink
Zaini.
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I hope that you are enjoying your vacation Umair!!
Sharmin
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Dore has the same wish. Geniet er van!
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Zaini, Sharmin & Dore ,
i m back again , i reached my home a night bfore yesterday's night , and i spent a whole day by sleeping all the day , now i got a few hours straight to catch up all the posts in one sitting on internet so .. here i m ...
Thanx a bunch for wishing me a gr8 vaccation , it was really superb , being in murre and other hill stations was gr8 experiience , it was really gr8 to go one hil to another ahahahah ... i will upload pics of that on my facebook album ( i hope really soon ) ... weather was really soo pleasent and also the views wao ..... and after then walking on a street after 12;30 in night and drinking tea or coffe in a lil cold and calm environment waooooo ..... cant say that all in words , that was really superb experience ... i enjoyed that alot ..... i will try tto update that all on facebook Pics + story :wink
Umair
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That's great, Umair!
Out of curiosity,did you chelate on your vacation? I mean with desferal, ferriprox is easy...
Lena.
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Lena ,
i went on vaccations with a bag full of medicine ( insulin , ferriprox, osteocare, Chewcal & aldectone ) ... yeah , did chelation during vaccation days as well , but only with Ferriprox .... no desferal at all, now my doc has prescripted me desferal only for TX day , yeah i m not prescripted fr having desferal after chelation day anymore , but i have to start chelation 2 hour bfore TX and continue that after 8-10 hours of TX .... but i will keep checking my Fe with this treatment plan .... yeah , its easy to keep chelation ON with Ferriprox on vaccations and at any time, anywhere, and any occassion ( i always keep my all medicine with me, when i goes to attend weddings too )
Best Regards
Umair
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Umair,
I am at a loss with your new desferal scheme. You say you have desferal only on transfusion day before and after transfusion? You only have ferriprox now? Why is that?
Lena.
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Lena ,
i think my doc wana try and see this treatment plan's effectiveness and that's why she advised me this , i m not sure about this treatment plan's result but i will follow it till my next Fe Report ... i will give blood samples to test my ferritin , very soon ... the main thing in it is , IV Desferal , i m on IV desferal bfore and after TX and that's wat i think a plus point in this ... my doc advised me 3 desferal on Tx day (With IV or Pump) 2 hour bfore starting blood and 8-10 hours after Tx wth 9 Ferriprox 500mg a Day (Daily) .. i dont see anything promising in it but i think she prescrpted this bcoze i asked her many times to start Asunra/Exjade and when-ever i asked her for that she asked me "why you want to move on Asunra/Exjade when this combination is working superb for you?' and i always replied that i m tired of using desferal and that's wat i wana move on Exjade ...........
so, i think that is the main reason why she cutted off desferal to weekly schedule and told me to use that only on Tx day, and 9 Ferriprox a day and 1092ng Fe are the other reasons ..... well, i also dont see this plan effective bcoze i dont think that alone ferriprox could controle Fe or maintainn Fe on the level it is ...
i m looking to keep using desferal 1 or 2 days between the 12 day's intereval of Tx , but unfortunately i didn't find the same water for injection i used throughout the time i m on pump .. i used Global Pharma's water for injection and then Scotman's and now both are not available anywhere in my city and also in neighboring city Lahore ... since those water for injection are not available i tried a local one brand and you people know that wat happened to me after that swollen thigh plus fever and all that ... so i m scared to try any other brand and looking to get my old and friendly water for injection of global pharma or scotman .....
let's see if the treatment plan i mentioned above work's for me or not , but my 1st prioirity is to maintain my Hb Bfore Ramadan instead of Fe ... so , i m looking to get 2 Transfussions bfore 23 of August ... after that i will back to Fe issue ...
i hope i explained the situation , .. lots of probs , lots of issues, lots of worries its difficult to decide wat to adress first, wat to solve 1st ,,, life is really so stressful :-\ ...
Umair
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Off: Ramadan. We got Dish tv. I came across a channel yesterday which said 9 days to go. Umair, do you fast a month? Does that work with diabetis? I read smth like that through the lines of getting your hgb fixed before 23th.
On: my apologies, i dont think it work. Although i used to take THE same dosage. It might stay stable though.
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do you fast a month? Does that work with diabetis? I read smth like that through the lines of getting your hgb fixed before 23th.
Dore,
i want to fix my Hb bfore Ramadan bcoze of possible blood shortage in Ramadan , that's why i want to take my Hb above 10 bfore Ramadan that is near to Start .. hmm....
Umair, do you fast a month?
No, i dont .. but i feel guilty for that why i dont Fast, every year ...
Does that work with diabetis?
dont know anything abut it, so , cant say anything about it ...
On: my apologies, i dont think it work. Although i used to take THE same dosage. It might stay stable though.
i think the same but i find my self agreed to give this plan a try bcoze i was tired of using pump .. so i decided to give this plan a try ... but, if my Fe stay's stable with this plan then wat i need more ...
best Regards
Umair
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Umair,
why is there a blood shortage in Ramadan?Don't people give blood during Ramadan?
IV desferal is very effective. I wish things work for you.
Lena.
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Yes most people do hesitate donating blood in Ramadan because they are fasting, which itself takes much energy. Although, I think, If someone takes proper meal before starting fast should not have any problem donating blood. But then again, it varies from person to person depending on donors overall health.
Many blood banks here observe blood shortage in Ramadan.
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Aha, now I understand.
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:exactly wat Tariq has said , i Agree to that ... people give's/donate's blood in Ramadan as well but only after Iftaar ( when Fast end's up ) ....
@ Lena ,
Thanx :) i hope this Chelation plan wil work for me :)
@ Dore
:whew Finaly :whew , Thanx GOD :grin (Just Kidding)
Regards
Umair
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Tariq,
But one can't donate blood while fasting,can they ?
Zaini.
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As far as I know, its allowed to donate blood. But transfusion while fasting is not allowed, since it gives us energy.
-
Tariq ,
i think Donating blood while fasting isn't safe .. i m sharing the experience of one of my uncle who regularly donate blood .. once he came back after donating blood and then went to sleep and without taking Breakfast , when he woke-up he faint downed and that was really horrible experience for all of us at home bcoze of seeing him in condition of unconciousness ... He's well strong man and his Hb stay's always in normal range , the only thing , he is 40 years old and this happened 2-3 months bfore his 40th Birthday .... i do agree with you that people can donate blood while fasting and there's no restruction for it but on the other hand for donor's safety i think we should avoid this ... in my thal center they always call for donor after Iftaar ( when fasting time end's up ) .... plz correct me if i m guiding to wrong side ....
Regards
Umair
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Hi Umair you done a good job as the holly Ramadan is so closser it will be very helpfull to the doners who donate blood on this ramadan. Thank u a lot.
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Your Welcome, Sumaiya :) Happy, Holly Ramadan Mubarak to You !! ...
Best Regards
Umair
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Hi all ...
i m back on forum afer been absent to the forum, actully i was out of city from 7/8th of august to 13th of august ... then i came back and joined the forum but unfortunately my internet started troubling , it was off since 15 to this 22th august (this staurday ).. 1st there was a network probleme and then bcoze of a probleme in my LAN card ,,, it took time to call an expert to ISP and then he told me that my LAN card isn't working .. so i bought a new 1 from market and replaced my old 1 to a new one .. anywayz , i m back again to eat the brains of you all and making mistakes again n again & again :grin ....
Best Regards
Umair
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Welcome back Umair :biggrin
manal
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Thanx Manal :grin
-
Hi Umair
I hope you are well. It has been quite a long time since I last saw your post. How is Ramadan going?
Quote
Umair, do you fast a month?
No, i dont .. but i feel guilty for that why i dont Fast, every year ...
Plz do not feel guilty, you are allowed to have this time off. You can do other ibaadats instead. Do not forget us in your prayers.
Hope to see your posts more often.
Take care
Jade
Jade
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Jade ,
Thanx for remembering me and wishing Ramadan and making me feel comfort that i m right at taking the benefit of the ease in religion ... yeah, i m allowed for this as i m a patient but the guit is that i m missing a special thing of this month ... You and all are always in my prayers , plz do keep remember me in yours , i need lots of prayers regarding to my future (and hereafter as well :wink ) ...
i m regular to forum and i think posting daily in threads i think i could help , but i know i m not that much active on forum as i was 3-4 months ago , but no serious reason , just feeling lless energetic than i was at that time and i have shared almost 80% of things that i experienced in my life & no more new experience that could b encourage or benefit others , so have nothing to share mena's less posts .... but, i m still posting and average is same , but nothing progressive nothing interesting , mostly posting in "general chatters" or in "chelation corner" ...
once again thanx alot
lots of best regards
Take Care
Umair
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Hi ya ALL ,
i think i was out of topic to discuss there in " Thals n depression " thread , so i decided to answer here in this thread ..
Recap
( i dont know why i m hesitating to go for Tx since a long time, i didn't got the reason why i m behaving like that ... my recent Tx is after 20 days , and last tx was after 17-18 days , i dont know why i m delaying my TXs too much , and again and again , its continuesly 4-5th time that i delayed my Tx and delayed for very long , my Hb was below 8.5 everytime since last 4-5 Txs and this time it was 7.8 ... i still won't to go but my knees forced me to go , whenever i delayed my Tx that results in aching knees , yeah my knees start aching o low Hb everytime .. and that's wat start happening again a few days ago ) ... yeah, i know my Hb is very much low and i need a few extra Txs , seriously low ...
Come on Umair, I understand delay of your transfusion when there is a blood shortage but to delay your bt on your own, that's crazy. You harm yourself. Do not do that to yourself.
Lena.
---------------------------------------------------
Lena,
it was not the blood shortage when i delayed Tx last time but this time , it was set of events that made it late ..
on sept-24 was 3rd day of Eid...
25th Friday, and i dont like to go for Tx on Fridays ..
26th Saturday , here i was not sure about the blood availability and i dont wanted to have a Tx with stored blood more than 10 days ( bcoze just after Eid there was No Blood Camp date ) ...
27th was sunday ......
28th monday , its was the date when all people joined back to normmal routine ..
29th tuesday , i was expecting a blood camp on this date and i wanted to have blood bag of this camp , thats whay i waited for wednesday to go ..
30th Wednesday , my Tx day , Hb 7.8 , blood bag was bleeded just a day bfore my Tx day .....
i m planing to go for 2 more Txs in upcoming 10 day to keep up my Hb around 10 ..
i will try not to harm myself again and will try to have Tx within the 12-14 days ( as my doc has said me to do ) .. i hope this will never happen again ..
Best Regards
Take care
Umair
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Umair,
do not let your hb below 9-10. That's all you must check out and adjust your bt according to that.
Have a nice day,
Lena.
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lena,
i will try to keep a good eye on my Hb and i will try my best to keep my pre-tx Hb in-between 10-10.5 ... thanx for wishing me a nice day ... wishing you too " A Nice DaY :) " ...
Best Regards
Take care
Umair
-
Umair,
we have many days to hear from you...Is everything all right?
Lena.
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I have been thinking the same thing Lena, I hope that you are doing well Umair.
Sharmin
-
I'm seeing him around on Facebook, hope he is doing fine.
Miss you Umair :wink
mana
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Got a text from Umair, he is doing fine and out of town. Didn't mentioned when he will be back.
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Thanks Tariq.
Hope you are well too :wink
manal
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Thanks for letting us know Tariq, I hope that he is enjoying himself :)
Sharmin
-
Enjoy yourself, Umair. We allow you to forget us if you enjoy yourself. :dunno
Thanks, Tariq.
Lena.
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He will only be online during Paki nights. He joined his father in their family business.
Good luck Umair with your new way of life.
You better don't forget us, Umair!!! Hahahaha ;)!
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He joined his father in their family business
Thanks Dore for the update. I think that what Umair needs in this stage of life. Now he is a healthy guy with a low ferritin, time for self actualization which i am sure would be a turning point
Best of luck my freind :hugfriend
manal
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So, he is away on business? That's even better because business will keep him busy and not thinking nasty thoughts. Happy for our Umair.
Lena.
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Thanks Dore:)
That is great news. Congrats Umair!
Sharmin
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Thanks Tariq.
Hope you are well too
All good in the hood :thumbs
-
He will only be online during Paki nights. He joined his father in their family business.
Good luck Umair with your new way of life.
You better don't forget us, Umair!!! Hahahaha ;)!
Wow,Umair you have grown up :heehee :heehee :heehee just kidding bro :wink.
Zaini.
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Hi ya all ( Lena, Sharmin, Manal, T @ r ! Q, Dore, Zaini )
Thanx for Remembering me and for your concerns ... i m all right , i still remember u people , (how can i forget you people , you people mean alot tome ) ( and plz..plz.plz.. tell me plz , how can i forget you people ?? how ?? :D :grins :rotfl :rotfl :rotfl ) ...
Enjoy yourself, Umair. We allow you to forget us if you enjoy yourself.
Naahhhh... you people are a gr8 source of inspiration, courage and strangth so i dont wana forget u people ... and its impossible to b happy without the people who were with you in times when u r down , u people always been with me, so u peopple are realy very important for me :) ...
Wow,Umair you have grown up just kidding bro .
No zaini sis, i went on shop to close shop a lil earlier :grin ... i m not a good businessman :grin i goes to shop with the confirmation that we will return back home soon ( now a days , going to pick-up only, but i goes a lil earlier than closing time ) ... :grin
Best Regards
Take care
Umair
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I am so touched Umair, but it was all your effort and compliance, good luck
manal
-
Good to hear from you, Umair and always good to hear that we haven't heard from someone because they are busy with life. That's what it's all about.
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Thanx ya Manal n Andy ,
there is a big hand of you people and this community as well to push me forward keep me moving on this way ... it was impossible to keep moving alone, everybody has tob encouraged through the way to get keep moving and you people did encourage me to make this possible ... :)
Umair
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Umair,
This group is all about helping thals to live normal lives and we are all overjoyed when we see someone who has turned his life around the way you have. Your hard work has many rewards and being able to get on with life is the biggest one. I am even happier to know how much you have influenced your fellow thals in Pakistan. They need the support and the belief in themselves and you are helping them greatly. Changing the thinking is a big step and you have changed yours and are helping others to change the way they see their own lives and this is an important accomplishment.
-
Andy,
:agree to u at all ...
---------------------------------
wat i did is nothing infront of wat you people are doing ... so, i m trying too, to spread, to tell wat i got to know here... encouragement , guidence , support , awareness and hope these r a few things of that long list that i got here :) .... :lovethissite
Umair
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You are always humble, Umair.
You have got a lot of qualities as a person and you are a model and an example to many thals.
First you regained your life and now it's time for your second fight:to earn your living and become an independent person, to open your horizons and go on with your life. Do it. It's time now to move on and we are all with you.
Lena.
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Thanx Lena ,
:) .....
Best Regards
Umair
-
hi ya all,
it was my Tx day , or u can say the worst/baddest ever Tx day :( .... i expereienced the ever lowest B.P (Blood pressure ) that was below 80/40 , yup n it was after taking a lil bit of salt n cold drink(just when i started taking ) , Back-ache and changes in the rythm of heart beat and twice Hypoglycemia experiences , didn't check first one bcoze we was busy in handling of low BP , so not sure abt that , but 2nd one was 51mg/dl at 4;30pm ... so, it was a really horrible Tx day .. plz remember me in prayer :grins ..... feeling soo much tired :S .... :-\
Umair
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Salaam brother Umair,
Hope you are feeling better....you do not seem to be posting so often these days...it is always good to read your posts :smiley
Hope you are recovering well after this transfusion.
Emby
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Take a rest, Umair and please try to relax...tomorrow is another day.
Lena.
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Umair,
I am sorry to hear that you had such a difficult day. I hope & pray that
You will be better soon, and that such issues will not occur with your
Next transfusion. What was your pre tx hg? Be sure to eat regularly
To maintain your sugar levels. I know you work very hard to stay healthy,
I wish you more courage to continue working hard and happiness in
Your future so you can enjoy your good health!
Little A is getting his tx today, I'll post again when I get home.
BTW Lil A wants uncle Umair to know he got the game winning goal
In hockey last night.
Take care,
Sharmin
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Umair
i am sorry to hear about your expierence, but what was the doctor's explaination for this?? what caused all this???
Sharmin
Please give little A a big hug. I am always pride of our champion, he is so talented :hugfriend
manal
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Umair,
How are you feeling now? I hope that all of the symptoms have settled. Is your doctor going to follow up with you to make sure you are doing better now? How are your sugar levels?
Sharmin
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@ Emby
W.Salam Sis,
i m fine now .. but a lil wekaness .. but its okiey :) ...
wish n hope tat your sons are doing well, wishing them a super bright future :) ...
@ Lena ,
i slept for while after coming back home from thal center yesterday , from 5;30 pm to 9;45pm .. feeling much better, today ..
@ Sharmin,
its nice to hear that Lil-A is doing a great job for his team and he is doing well . i m very glad to hear this :) .. hope that he will keep improving day-by-day , and one day he will b a superstar of Hockey and will b a succesful man , in the future :) ... hope that his Tx going/went well .. sending lots of greetings his way for his game winning goal :) ....
Thanx for the prayers , i m fine now ... my pre-tx Hg was 9.7 ... Diabetes is soo much troubling .. its like a roller coaster ride , soo much ups n downs in a short time, last night when i woke-up it was nearly 10 o'clock , i checked my BSL , it was 366mg/dl , and then when i was preparing to sleep (its was 1;30 am ) i checked BSL again and it was 477mg/dl ... and today at 8;30am i felt something again , so i checked BSL again and it was 44mg/dl ... . wat can i do more ?? .. m feeling tired bcoze of it ,,, its something that seem impossible to me to controle .... :S .... but, i m still trying my best to get ride over it .. hope that soon i will get it under controle...
@ Manal
no explaination, nobody of thal center's staff talked to me about that, they just shared a bit of info about my BP levels but no explainations ... i haven't contacted my doctor yet , to whom i consult regularly (the doctor of whom treatment plan i m following ) , my parents are saying me to visit doctor this friday.......
@ sharmin
i m fine , ... no follow ups , infact the doctor of whom i m following treatment plan , her clinic is in another city , her clinic is in Lahore, n i live's in Faisalabad .. and i dont want to start anyone else's treamtent plan for anything ...so, that is the reason of no follow up investigations or anything else .. ...
--------------------------------------
Umair
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Umair,
Can't you contact Dr Javeria on phone?
Zaini.
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Zaini,
i can contact her on phone but i dont want to contact on phone bcoze tommorow we r going to Lahore to visit her clinic ...
Umair
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Umair,
I hope that your visit with the doctor goes well. Please update us about your appointment.
Sharmin
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Sharmin,
i refused to go n visit doc :S , i dont know why i did this .. my famiily went to lahore yesterday and my parents was saying me to go with, but i refused, n me n my younger bro stayed at home .. i m behaving like very moody now a days :S i dont know why ....
Umair
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Umair,
The good thing is you know you are doing wrong,so correct it ok? May tumhain daant bhi sakti hun samjhay,i am like your big sis :waiting banday day puttar ban jao , :mom .
Joking aside,you have come a long way Umair,you have done hard work,don't let it go to waste plz.I hope you understand that we care for you,and if you are in pain,its painful for us too,so take care of yourself,for us and for your parents.
Zaini.
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Umair,
Like I said, you need to be looking to your future now. Ignoring your health won't help anything. You need to realize that lowering your ferritin was only half the battle. You can't possibly believe you have eliminated your organ iron, also. You haven't and your compliance has to be complete. I want to mention something we heard more about in NYC. Doctors are seeing some reversals in the pancreas with iron removal. Patients become more insulin tolerant when they get the iron cleaned out. It's a good goal and will eventually help relieve the frustration you have in trying to control your diabetes. I also have to add that you should really get more compliant with your meal schedule. 5 small meals are recommended daily when using insulin and for good reason. Taking insulin without having regular meals will lead to sugar imbalance. You can't wait a long time between meals.
I realize that there is also a psychological issue at work here. You have grown up with the thinking that your life will be short. Now you know that does not need to be the case and it is a major psychological adjustment. Buddy, we're here to help you manage so come to us with your thoughts and feelings. We want to see you enjoy a good life, so don't worry about burdening us with your thoughts and problems. Umair, I can only imagine what one has to go through when this realization takes place. In may ways it is a real challenge to everything you ever thought, and just seeing that the future can be different won't make it different. This change has to take place within you and it won't be immediate. You have to believe that it will and make it happen. It's time for you to stand up to yourself and demand that you do everything you can to fully comply with your treatment and to become an adult with a real life. Give yourself a real chance at life. Your future really is up to you. Your own determination will be the key factor.
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Hi ya Andy & Zaini ,
acutly, i m having flu now a days, and yesterday it was a lil worsen.. my body was aching and thats why i refused to travel , i wanted to got but i refused thats for wat i said "i dont know why i refused" bcoze i wasn't sure in my mind abt it, that why i m refusing if i want's to go to visit ... i refused bcoze we had another plan of going again to lahore lahore on this monday as well, so i decided to rest at home at friday and go for check-up on monday .... .. dont worry everything is OK here with me ... and thanx for your concerns and support and encouraging Posts .. i m not gonna ignore my health , and there's no way to step back to treatments , especially on this stage , never ... its a Blessing of God that i m coming back towards life , i know it will b thanklessness if i refused treatments or ignore my health ...
Thanx alot , Andy & Zain , for your kind words, enouragement and support , you people will find me always up in fighting for myself n my health ... a few ups n downs r the part of life , so dont worry i will stand up again and dust off my shoulders everytime i feel down ..
We want to see you enjoy a good life, so don't worry about burdening us with your thoughts and problems.
Dont worry , Andy ... i will keep eating your brain :grin i m not gonna suffer alone lolzz :rotfl ...
@ Zaini Sis,
May tumhain daant bhi sakti hun samjhay, i am like your big sis
u r always welcome sis , i always would like of being correct ... it sound's me very cool when someone correct's me ... i would like it everytime ... jab koe dant ta hai tau bara maza ata hai kay aahhh aaj kuch naya howa hai aaj mujhey dant pari hai lolzzz coze dant bhi kabhiiiiiiii kabhar he tau parti hai ,, yeh scene kuch aisa hota hai " tired of boring routine chalo kuch naya kartay hain , laikin kya ?? chalo aaj dant khatay hein " :rotfl ... :grin ... ok sis mein hamesha apna khyaal rakhounga :) " ...
BTW, i like the line u wrote in punjabi , its very common n famous line here :) :grin ...
Umair :)
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Umair, I got plenty of brain so eat away. :food
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I totally agree, Umair, with Zaini and Andy. And what Andy said about reversals in the pancreas after iron removal is true. Our doctor has been working on that and I have seen some of my fellow patients reverse their insulin tolerance and correct their glucose tolerance test. That's true. Also we do not lower our chelation efforts, because apart from liver and heart there are some other organs to be treated, too: pancreas and gland and furthermore skin and bones. Our whole body is deep into iron. That's why we never abort chelation, we never leave it aside.
As to psychological issues, well, we have talked a lot about that in another topic. Andy talked about the turning point in our beliefs about life expectancies.If you allow me, who is more eligible to talk about that than me-because of my age? I never ever believed I would reach this age. Really. Had the desferal not come into my life in 1976, I would have been long dead and not sitting now in front of my laptop talking to you. When I started to use desferal my ferritin had reached 8000 and if desferal was to be one year late, well, I would have been long gone. That's the whole truth and we are not to fear words. However, I am here now and look ahead and I really believe that there is every chance for me to stay alive as any other healthy man or woman. Of course, I work on it. That's what I want to stress out for everyone of you, that's what I want to conclude in: that if you work hard, you'll be repaid. And your payment will be your life---is there a better gift than that?
Lena.
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Lena :hugfriend ,
I wish i would be able to meet you one day,I'd love Lil Z to meet you,so that she can understand that nothing can stop someone but themselves .
Zaini.
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@ Lena ,
i completely agree to all wat u has said .. i will comply with my treatment as i did in past , and yeah, there is nothing more preciious and more beutiful than life, life is the better than the best gift ... well , i never thought like that i will not gonna live longer, or my life will b short , or anyything else like this , life expectancy never were in my books of thoughts/questions ( :grin ) i always believed that everyone has to live his life till the time comes up , and thats wat i have said many times in my previous posts , the causes of tiredness are some other/various other reasons , but it doesn't mean that i will give-up :grin , i will keep :happydance , :rotfl , :wink , :party , :love , :teehee , :yay , :laugh , :crackup , :veil , :yahoo , :clapcheerboy and ofcourse Andy i will keep :food doing this too, all the time in all my life :grin ...
aall i need is encouragement from u, as you encouraged me everytime in past and this time too ... i know u people r alway there for me and this is a relief for me, u people are source of courage for me, thats why when-ever i found that i m feeling down i comes to here to share that all to u , bcoze i know that u people can solve that puzzling probleme for me ... so , keep encouraging and i like your posts bcoze your posts always contains very much to get courage n strength to stand up again, u r a big source of inspiration for me .. believe me , i m saying it by heart when-ever i see a person with a good controle on Fe and living a normal life, that is for wat i m working hard .. woops , another long post :grin .... c ya take care :grin
Umair
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Zaini,
I would love to meet you and Lil Z, too. She is in my heart and -I haven't mentioned that till now- I love her photo.
Umair,
I am really happy to see you willing to struggle for yourself. That's the spirit!
Lena.
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Thanks Lena :hugfriend
Umair,
Keep up the good work. :thumbsup
Zaini.
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@ Lena
:)
@ Zaini
:grin i will try my best :grin .....
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Umair
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:grouphug
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Nice post Umair. I am still on board. :hugfriend
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Thanx Ya Dore .... :thankyou2 ...
i hope n wish that you're doing fine ... :)
Take CAre
Umair
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How is Umair doing lately?
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Dodo ,
hi ya , thanx for asking Dore , m doing fie Thanx :) ... hope that you're doing fine too and enjoying ur life .. :) ....
umair
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Hey Umair,
How are you doing??? No facebook, no msns means no updates for me. I hope all is well. Somebody knows something?
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Hi ya Dore ,,
I'm here again :) ....How r u ??? ... i'm fine and hope that you'll b also fine .. thanx for your remembering and noticing my absence and asking about that .... i have mentioned the reason of been absence in another post " historic flood in pakistan " .... yeah , we're out of touch since a long time .... hope to get in-touch soon again ... :) ...till then
Take Care
Umair
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Umair,
Like I said, you need to be looking to your future now. Ignoring your health won't help anything. You need to realize that lowering your ferritin was only half the battle. You can't possibly believe you have eliminated your organ iron, also. You haven't and your compliance has to be complete. I want to mention something we heard more about in NYC. Doctors are seeing some reversals in the pancreas with iron removal. Patients become more insulin tolerant when they get the iron cleaned out.
Hi Dear Andy,
I love to read this post. Thank You. WHERE THERE IS A WILL THERE IS A WAY. I AM TRYING.
Dharmesh.
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Yes most people do hesitate donating blood in Ramadan because they are fasting, which itself takes much energy. Although, I think, If someone takes proper meal before starting fast should not have any problem donating blood. But then again, it varies from person to person depending on donors overall health.
Many blood banks here observe blood shortage in Ramadan.
Hi Umair,
We at India faces blood shortage too on Vacation time in March-April and Diwali Time October-November.
Otherwise the supply is ok.
Dharmesh
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Dharmesh,
blood supply almost ok here in, pak ... but only in ramadan and during vacations blood banks face blood shortage.. otherwise its ok :)
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Dharmesh,
blood supply almost ok here in, pak ... but only in ramadan and during vacations blood banks face blood shortage.. otherwise its ok :)
Umair, so nice to see you back. I was thinking about not seeing you since long.
How are you and how is your FE? What's the last report?
Anyway, glad to see you. :)
-P.
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Assalamu'alaikum Brother Umair....how have you been? was just thinking about some of the members...nice to see you posting again!
How is your health? What have you been doing lately?.....this site has been missing your brand of humour...I hope you have inshaAllah been in the best of health and that Allah has filled your life with His beautiful blessings.
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@ Pratik ,
i am glad of being with you all again ..... i m fit n fine .. how are you doing ?? .. my ferritin mmm it was 702 in last report and now it must b less then 700 ... what about you man ?? whats your ferritin level??? ... same here Dear :) ..
Emby,
Wa alykum as salaam, sis ... i am fine.. how are you ?? ... and i was missing you all but didn't come back because at some moment of life , sometimes i feel its useless to know everything when you dont have enough facilities to take any further care of your self ... though T2* MRI facility is now available in pakistan but still need upgradations in many sector of thalassemia management... that is the reason why i was away :) ... i am doing fine alhumdu-LILLAH , way active and better than before :) .. . doing nothing ,, still free to enjoy the life hahahaha :D ... and i was missing the quality of info. and knowledge that site gifted to me :) ... Ameen .... and same to you too sis , Ameen ...