Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Dori on February 13, 2009, 03:27:30 PM
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Hi Forum,
I thought it is better to make an own topic then stealing someone else his topic.
Today I met my doctor and it was a good meeting. He was not very happy with my ferritin, because it is already 6 months (in my thoughts: 2 years) the same. At the end he underlined that he thinks we will see soon a drop in the ferritin. I think his definition of soon is within three months - then I will have the next appointment. He also believes that my hgb dropped too low. So next friday I will have an extra transfusion (1bag) and the other friday the planned transfusion (1 bag). (...)
He told me that tinnitus is something I have to deal with for the rest of my life. I never told about this here, but I have this since a year and it this really annoys me. Most of the time I go to bed sooo sleepy that I do not even hear it.
I told him that the ENT-specialist dont want to remove my tonsils. He told me that is always the problem. The ENT wrote something like this "very smally and peacefully tonsils'. If I still want to have them remove I should visit the ENT when I got a really bad sore throat infection.....
Eyedoc is moved to 2010.
T2* wont be able in our hospital untill it works by the other big hospital. The last time they had such software too, but it did not work. I am very thankfull to hear that he will let me test in the other hospital if they got the software. So we dont have to wait in untill my cardio said OK we will buy it too. They expect to have this soon working. So I think I got already one thing to do during my summer.
DEXA-scan is moved to 2010 or 2011. I was finally able to have a look at my results. I am under the normal ranges. So even when I start to take vit d and dairy very brave, I think I still need a treatment for this. This treatment will not start before the ferritin is within normal ranges. Doc talked about meds we have discuss here. They can IV: every month or every year(!). cortison?? It is like the fluoride on your teeth, he said.
I think I will discuss the supplement issue the other time. All documents from my child doc are gone, but child doc was the only who let always lets my minerals levels(record:16 tubes of blood). But, first I need to discuss this with my parents.
I think this is all what has been said during my vsiit.(...)
Thank you for reading and thank you for keeping my brains fresh.
Dore
p.s. :happydance If Rafael Nadal beats Tsonga tonight; I will see him playing saturday night. So please, fingers crossed! Also I will eat my first steak in 6months! Yummy :)
Note: I am editing some of my posts because of personal thoughts. Dont worry, the medical thing will stay here. I still must write everything what i put here down in my own file. Lots of things I couldnt remember already.
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Hey Dore,
I am sorry for you Tinnitus problem,but do you know Adolf Hitler and Vincent Van Gogh also had Tinnitus :) and David Letterman and Jack Straw also has Tinnitus :wink so don't worry you are not alone.
I hope your T2* will be done soon,are you taking any kind of supplement? If not start right away.
I hope your wish will come true and Rafael Nadal will win :wink.
Good Luck.
Zaini.
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Dore, the term you were looking for is conference call.
Because your deficiency is lack of an enzyme, supplements will most likely have little if any effect on the problem, but antioxidants can be useful in helping prevent the tissue damage that is caused by iron overload, so your supplementation program should be aimed towards that. I know you're hesitant about this but the effects of antioxidants are well proven in terms of protecting cells from the oxidation that iron causes.
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Dore, you need to concentrate on chelation right now. IP6 is a dietry supplement(natural) that prevent the cell damage caused by iron overload. In Oakland, they told Sharmin that taking IP6 saved little A from the oxidative stress due to iron overload. So please concentrate on this
wish you luck :hugfriend
Andy
Because your deficiency is lack of an enzyme, supplements will most likely have little if any effect on the problem,
Out of curiosity, why is that???
manal
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Core,
PKD is treated in Oakland. I have requested more info & they will email it to me.
PKD patients have SQUID tests done here. They suggested that you can go to Germany or Italy for SQUID as well. I will let you know when I get more info. Some patients take more time to respond to chelation. Ferritin doesn't coordinate well with LIC.
Sharmin
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Hi Manal,
The reason that supplements won't help with Dore's inherent disorder is because they will not replace the missing enzyme. The red blood cells destruct because of this and supplements won't affect that. However, antioxidants can protect against damage done by iron, so they can be of value for the secondary problems.
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Thank you all :) And Sharmin, I am really happy that you asked my question. I know we have SQUID in Hamburg, but I am only in for it. And i got that nasty strange port-a-cath. I am really sorry, but I am too tired to answer or comment any other thing. I can only ask things.
Ferritin doesn't coordinate well with LIC.
What's LIC?
I am going to share something with you very soon. I came across an interresting article - remind me of it please. Ach, we all hope that there comes a day that they can give the missing things, or in this case the missing enzyme.
I cant find IP6 here...
Rafael Nadal (Esp) just beated Jo-Wilfried Tsonga (Fra).... I will see him playing tomorrow night!!!! I have heard he walks through the location, but if he does tomorrow I am a way to shy to ask for a picture.. :shy
Thank you!
Sleep well, Door :)
p.s. what is the past from win?? We use the same word. That's really confusing!
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Past tense of win is won. LIC is liver iron concentration. And IP6 is also called phytic acid or inositol hexophosphate. Good luck to Nadal.
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Quote:
Rafael Nadal (Esp) just beated Jo-Wilfried Tsonga (Fra).... I will see him playing tomorrow night!!!!
Mes felicitations. Amuses toi bien.
Quote:
I will eat my first steak in 6months! Yummy
Bon appetit, dore.
Prends soin de ta sante et porte toi bien. Essaie de reduire ton"ferritin".
Bisous
Jade
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Jade
One of my dreams was to talk in french. Though i studied french for 6 years in school everything just evapourated :rotfl
manal
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Hi Manal
I prefer french to any other language. It is so lively. Do you understand what i have written?
Jade
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Jade, what i can understand is the whole meaning but not word by word. What i can get is
Congratulation,enjoy yourself, enjoy your food, take care of your health, reduce ferritin wooo that was really hard. I love the sound of the language :wink
manal
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:clap :clap
Exactly Manal. You understand then. The sound is nice, isn't it? You open your mouth to say the words unlike english where you only speak half open mouth. Hope u understand what i mean.
C u
Take care
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I thought I had answer already, but I should have done something wrong.
Linguistics:
He wins = hij wint
He won =hij won
That's why I sometimes become confused! We have more similair things or the some word, but in an other meaning : :exactly
Tinnitus:
We got the huge autobiograpy about Hitler, but I have never heard my father talking about that - he is the only one who reads them plus one of his brothers). And I know that Vincent van Gogh cut one of his ears....I love his paitings btw. The tinnitus is pretty worse at the moment. I hope that it will get less when my hgb will reach the 7. Sometimes I have the feeling that there is something in my ears, but ent did not see anything :dunno
Because your deficiency is lack of an enzyme, supplements will most likely have little if any effect on the problem, but antioxidants can be useful in helping prevent the tissue damage that is caused by iron overload, so your supplementation program should be aimed towards that. I know you're hesitant about this but the effects of antioxidants are well proven in terms of protecting cells from the oxidation that iron causes.
@ Everyone: It is pretty difficult to understand, is not it? :)
What are anti-oxidants? (A warning: we believe more in vitamins than anti-oxidants here :biggrin )
Je parler françias moyennement. Demain arriver (?) un invitéé de le (de+le=?) Cameroun. I fais la cuisine; diner. Je m'ai honte terriblement pour mon français.
I have had French lessons at highschool for 6 years, but it all left me during the past 3 years. If anyone knows a good site to refresh my French: tell me, svp.
I really love French and Spanish. These are beautiful languages and indeed more lively than Dutch. Dutch is very hard to learn so dont learn it hehehe!
Grosses bises,
Dore
p.s I really, really enjoyed the saturday night, despite that I was too late to ask for a signature. My seat was in the roof (I still wonder why they say it is a seat) so I went to my father. He sat most of the time on the con stairs, because the men before us was too high for me. Though it were still not the best seat. My father has very bad eyes (he is nearly blind due lyme disease) so I had to tell them why the crownd was making sounds. My father told me that we will go next year as well and he will buy tickets for (real) seats in time. :heartred
You get also the best wishes from my cat :hithere
I will continue my search for IP6.
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Antioxidants are any substance that reduces oxidative damage. In the case of iron overload, the oxidation is caused by iron. Many vitamins such as vitamins C & E are also antioxidants, so you can't really separate the two. IP6 is related to the B family of vitamins and is found in every cell in your body.
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Thanks for the explanation. I did know a bit about the connection, but anti-oxidant sounds as a empty name for me. Anyway, dad is on his way to the hospital. So next week around tuesday we'll get the results I guess... :candle :pray
I found IP6, but I do not trust the website. I hope that I can find it somewhere in the Netherlands in a store.
http://www.youngagain.nl/catalog/index.php?cPath=2&osCsid=1c9978935ee0371651b3568b7872322f (http://www.youngagain.nl/catalog/index.php?cPath=2&osCsid=1c9978935ee0371651b3568b7872322f)
I read somewhere that you find IP6 also in beans and brown rice. That is good to hear, because I LOVE beans (especially greens ones). But I dunno which kind of beans contain IP6.
Or http://www.vitaminstore.nl/Search.aspx?keywords=IP6 (http://www.vitaminstore.nl/Search.aspx?keywords=IP6)
They also sell L-car. But I still can consider to buy that in the HEMA. :shh
An other question. Someone suggest to take ginseng....?
Owh, and does someone know what Q10 is???
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Dore,
I believe you are asking about COQ10???
I don't know much but one thing i know about COQ10 is that it's also an antioxidant.
From http://www.puritansale.com/coenzyme-q-10-055?page=0&searchterm=COQ10&rdcnt=1
Coenzyme Q-10
Coenzyme Q-10 (widely known as Co Q-10) is an important nutritional factor that performs a variety of functions.** Co Q-10 appears in nearly every cell and is an essential component of the electron transfer chain, giving it antioxidant power to help fight the effects of cell damaging free radicals.** Coenzyme Q-10 is best known for its ability to support a healthy heart and cardiovascular system.** At a dose of 200 mg, Coenzyme Q-10 has been clinically shown to promote healthy heart function and to help maintain blood pressure levels already within normal range.** Co Q-10 also plays a role in converting food to energy within the body and may be important to cognitive and nervous system health.**
Zaini.
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Please, forgive me that I do not post this in the vitamin area.
I went to the homoeopathy chemist. First I searched for a my own so I bouht also Lavender sacs for in the wandrobe and stood eye in eye with a book someone suggest and what was only €2. Anyway, when I bought it I told myself to ask it. The owner of the chemist told me this:
L-carnitine 20 or 50? tablets for €19.90
IP6:
choline/inositol. coliar 250/250 NO ??? 505i €12.60 (as I understand it well this was only inosotol.
inositol 500mg €13.40
That is the text on the paper. I let him right it, because I had no idea what he was talking about.
My text: choline/inositol = €13.40
Only inositol is cheaper= €12.60
He also told me that it was better to take them both. He started to talk about fat metobolism so I told him that it was for a life depend transfusion patient. I mean, I am very skinny and I dont want that people think i want to be more skinny.
We got one other hemoeopathy chemist which I planned to visit later this week. I dont know any shop in Amsterdam, but who knows I will searched there aswell.
Ah, I think I will only buy ip6, because two of them will be too expensive. I can not ask my parents. I am sorry to disappoint you all about that.
Groetjes, Dore
@ Zaini, I mean COQ10. Do you think it is relevant for a person like us?
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Dore,
Yes i think Sharmin was planning on giving Little A COQ10,let her confirm it.
Dore i don't know what is the ratio between euro and dollar,( Netherland's currancy is euro right?) But have you checked www.puritansale.com ?
Zaini.
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Hi Zaini,
I will have a look later. I have been ill since thursday. Friday and saturday have been the worst days. I am not sure what it caused, but I think it is ok to blame Exjade. At fri/sa I almost slept for 24hrs!
My hgb was low 4.9 or 8.2 and my next transfusion is at friday. I hope it will be improved. If not I have to ask my two bags at one time and hoping that i wont get so ill afterwards. Btw this friday was the first day that there were almost only blood transfusions. I met one men with thal (i think). I heard he used Exjade too, but I was to shy of I heard that good. All the other are chemo patients. :(
Best wishes,
Dore
p.s. I wish you all a good sunday!
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It is me again. There going talks here now that Exjade might be the cause of this. So tomorrow I am not allowed to take the meds and we have to see what will happen. That means me, because I will be home alone. I took it this morning and I start to become very short of breath. My parents left without mobil phones so all I could do was sit still and playing silly games at the pc. It reminds me of that autumn day in 2006 (desferal) and ofcourse I really hate this. Now It really hurts when I take a deep breath. I still have nausea and above all I feel weak.
My family will contact my doctor later at tuesday to discuss this. So please hope, pray, cross, knock on wood or whatever that Exjade is NOT the cause. I am starting to get more and more worried when I talk about this so I think I will turn the tv on to watch something silly or good :wink
Let it be a virus and let the pharmacy have good antibiotics
Take care all & I will post here so soon as possible the outcome of the conversation
Dore :hmm :sandman
P.S. I have appt's at wed & fri in the hospital this week. Friday is blood transfusion, so i hope i wont be in pain this time.
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Dore,
I hope that you feel better very soon. I hope that your symptoms are not caused by exjade and that you can resume taking it soon.
I am praying for you, please keep us posted.
Best,
Sharmin
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Dore, i am sorry to hear about your illness, but i hope that you will be better soon
Dore, how about examining vitamin and minerals deficency in your body, sometimes these symptoms are associated with certain deficinecies in the body. Knowing whether you are deficent in vitamin and minerals ( vitamin B, A, D, ....phosphrous, zinc,....) will definetly help you and the doctors make a good judgement about exjade, hope you get my point
manal
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Dore,
Manal has got a point,you should for this, i don't know if you are taking any supplements,Please share what are you using.
I hope you won't have to stop exjade,but you can also lower your dose to 20 mg/kg instead of stopping it right away,if this is related with exjade the symptoms will lessen with the low dose if not go away,and if they not then they might not be exjade related,or may be then you can stop it for a day to check.
Best wishes,
Zaini.
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Good morning,
I know what Manal is saying is right. The fact is that I can never explain this to the doc. I have not take my supplements for a few days btw. Only my child doc did check all my vitamins (yearly). I mean with all, all because it were 15 tubes sometimes
As for the update:
My doctor said it is a very small chance that this is caused by Exjade. He told me to stop taking it now. I must retake it an hour after the start of the blood transfusion. If it comes back they will give me something against it. He thinks I am just ill. At the other side did he not talk about taking antibiotics...
I have had similar things with desferal, but the doc at that time did not want to give me those anti allergic stuff. Desferal plus L1 is for me more effective than Exjade, you see... I am probable the only person on earth who prefer Desferal infusions above Exjade cocktails! :grin
Do not ask me how, but tomorrow I must go the the hospital on my one and make it to the lecture about European Law too. (the theory is very difficult). And thursday I must attend the lecture for homework otherwise I will lose the extra point.[Or you come once without homework, or you wont come but send the teacher the homework you made.]
It is like Puja said: Think Positive! :whistle
Dore
p.s. i take tablets with calcium/vitD/zinc plus with vit D only, plus vit E (200IU),plus Vit B Complex and 5mg folic acid. C'est tout. But the last time I took them all was thursday night.
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Dore,
You'll have to be regular with your supplements,and may i ask how much calcium,Vitamin D and zinc?,and why not magnesium?And i think you should increase your dose of Vitamin E to 400 IU daily.
Do you like tea? If yes please start taking it after meals,and if its green tea its more better,because green tea is a very good anti oxidant,plus it will inhibit iron absorption from meals.
And take turmeric or Curcumin with milk if you can,again turmeric is a very good anti oxidant,while milk will give you calcium.
Take care,
Zaini.
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Owh yes, I do take magnesium too. I can not look for the contains of those tablets now, because I am supposed to learn. Yes, I love tea...but not when I feel ill. I do sometimes take green tea, but I prefer black tea, especially Earl Grey. I know that tea inhibit the iron absorption. I always try to take it after my meals. Btw do you know that milk does the same as tea? We have never milk in the fridge. We do have turkish yoghurt always, but only my mother takes it. Can you take tumeric with yoghurt?
Thank you
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Dore,
Milk does not have the same function as tea,yogurt is also a good source of calcium,you can turmeric with anything,i don't know how much it is used if any,in European cooking,but we use it on daily basis in cooking.
Zaini.
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Zaini, what Dore meant by'' milk has the same function as tea'' is that the calcium found in milk helps in preventing the absoarption of iron too
Dore you can put a small teaspoon of curcumin on youghurt or honey
manal
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Manal does say what I tried to say. I got the information from the Cooking with less Iron book from the Iron Disorder Institute. I dont have the book, but someone gave me the information.
As for the cooking: The Dutch cookery use almost zero flavours (nutmeg, savory and ....chive? I dont like the first two). But we cook Italian food often and that has more flavours. Btw one of the Dutch cheese is cummin cheese, but like I said before I dont like cummin. What can I say more? :dunno I spend most of the weeks one day by K. family and my niece and I always make dinner that evening. My niece don't like potatoes so we often cook 'exotic'. We only help my uncle with cooking on thursday, because that is potato-day (and his free day).
The ontopic news: I am still a bit short of breathe so it still might be only a virus. (And I am still sleepy).
I will write the tips down before I forgot them.
Have a good tuesday!!!
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i tried to post, but i can not find the words. i will try it tomorrow
Dore
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Dore,
I hope that you feel better soon. You can try putting tumeric in italian sauces - it works great.
Sharmin
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Dore
:getwell Can you start Nigella? It may help your immunity system.
Zaini.
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Ok, we got a deal. I'll bring the Asian Toko a visit so soon as I am back on Apeldoorn station :thumbs Now I have to run to catch the train of 8:27 am.... Did I ever said I like mornings? I do. It brings me good ideas. And the music from Ready for the Good Times from <--Shakira helps too! :hugfriend
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So soon as I left the house I had only bad luck. After 1,5hours 4 different trains and 5min running I came at my college. I took the elevator to 4 and I stood in an empty room. So I runned of the stairs to floor 2, log in an a pc and after 5 min I saw my mistake
It turns out that my teacher is sick since the 24th. I have looked at this list before, even this morning but I did not recognize her as my teacher. The rest of the day was a disaster too, nevertheless I am hone now :)
I went to the Asia Toko (is that also an English word?) and they don't have nigella. But I stood eye in eye with the fennel so I bought that :wink I will keep searching for nigella.
Ok, now the news I tried to write here yesterday.
Yesterday it was not only a black day because of the horrible plane crash, but also because of personal stuff.
My father's results came back as not (very) good, BUT we heard that they are not sure of what they measure is really marker (protein) so my father is also a guinea pig! :huh (They have never tell us this before, only that it does not say a lot or it is an important test or ... :rolleyes) More tests will be done in two weeks and it takes an other two weeks before we hear the results.
Tomorrow I will spent a whole day in the hospital to find out of the Exjade made me feel so horrible or not. I have also transfusion and most of the times it turns out to be a painful pasttime. Since you must accept all things with positive thoughts I will think about the good things.
Thank you for the suggestions and thank you for reading this,
Dore
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Dore,
I am sorry to hear that you have had such a difficult time. I pray that your father will be okay. I also pray that your symptoms were not caused by exjade and that they will soon subside. Please keep us posted dear,
Sharmin
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Dore, you are in my thoughts, good luck tomorrow dear, keep us updated :hugfriend :hugfriend
manal
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Dore,
Good luck with your dad's reports and your transfusion,you are in my thoughts in prayers. :hugfriend
Zaini.
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Hello Everyone,
It took me a bit longer than I planned, excuses-moi! It is not because I am ill. It is because I started to life again! I am feeling so great since I had the transfusion. And everything went well at friday. It is really a miracle. I had no bad reactions on Exjade, no bad reactions on the blood and I did not feel like I could sleep again 24hrs.
What did I do yesterday? I tidy up my room, orderded all those papers from study in files, cleaned the night table, table and cupboard, tidy up my closet, went even shopping to buy a few things (i found a good frame from the picture of grandpa with almost all his (20) grandchildren) and hand in a few books by library. I also read all those new (87) emails and did the laundry. When I went to bed I felt normal tired, and I like that feeling. I am very happy to feel so well and I am also happy that I have the energy to help my mother with doing the housekeeping. Thank you all for keeping me in your thoughts or prayers. I really appreciate that. I made a new transfusion cycle with the nurse. I will have the next in 3 weeks and the other transfusion in 2 weeks, 3week and 2weeks. Maybe I will try during summer to have one bag every three weeks. During summer I am always feeling much better than during winters.
The last thing I want to say that I refuse to talk about ferritine anymore and that I will let them check it not earlier than May again.
I wish you alll an excellent sunday!!!
:hugfriend Dore
p.s. I hope litte mister A and little madame Z are feeling better and/or great too
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Hi Dore,
Its really good to hear that you are feeling well again :hugfriend iam so happy for you.
Little Madame Z is fine :biggrin cough and congestion is still there and she is getting a bit cranky and tired due to that,but thanks to God there is no fever,I hope her hb is stable.
Have a good week :) .
Zaini.
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Dore, i am really happy knowing that you feel better now. i wish this feeling will always continue with you. May God bless you :hugfriend :hugfriend
manal
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Dear Dore,
It is great to hear about how well you are feeling. That sounds like a great plan you have made for your transfusion cycle. I wish you the best.
Little Mister A is doing much better now, just like little Madame Z - he still has cough and congestion but he is not too bothered by it.
Best,
Sharmin
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Manal,
I was thinking about this last night. To be short: hemoglobine is not my problem. So I am not sure of Hydrea will help me at all.
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Yes I know Dore that the ferritin is the biggest problem, that is way trying to increase the gap between transfusion will help you lower your ferritin.
Hope your studies are going well, i am always proud of people studing law :wink
manal
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Thank you Manal.
At the moment I am fighting to get myself in a trip to Brussel. I did not subscribe me for it earlier, because I thought I would be still feel very ill. I also thought we would hear my father's results at that time, but that takes 12 to 14 more days! :mad Why do they let you wait for so long? It's inhuman, it is.
PK def. does not affect the hemoglobine. It does affect the structure of the rest of the cell. Let me think what pyruvate does. An illegal source: http://en.wikipedia.org/wiki/Pyruvate_kinase
To be honest. I have such feeling that this is only the second time that I search for (good) pyruvate kinase. It's pretty difficult. Everytime when you think you does understand it, you don't understand it at all.
The best thing I can do is ask my father about it. You never have a right time to ask this, so I will ask it during dinner. Now I must run and get ready for college. We got European Law this semester. Actually it's week 6 out of week 7. Week 8 i for all the lectures what were cancelled (plus the trip) The trip is for year 2 and I got an exam of year 1 in week 8. We never have exams in week 8. :rolleyes Week 9 and week 10 are for the exams. BUT this time I have no exams in week 10. My birthday is at the end of week 10. I don't like it that everyone wants to know your b'day so I decided to turn it on for this website. I'll only say it once: it's 10th April :wink
Edit: I saw once a little babyboy with this http://emedicine.medscape.com/article/948360-overview. Not only his blood was affected, also his muscles and brain. Poor kid :'(
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http://www.williamsukala.com/articles/pyr_comp_review_1997.htm
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Dore, wish you all the luck in your studies and by the way later on in life you will realize that this stage of life you are in will be the one you will remember with a big smile :biggrin
BTW thanks for the link.
manal
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Why the big smile? :hmm :frustrated
I am still stuck in EU law. Three questions (a - e), but a lot to read.
Pyruvate Kinase Assay Kit. Pyruvate kinase (PK, EC 2.7.1.40) is an enzyme involved in glycolysis. It catalyzes the transfer of a phosphate group from phosphoenolpyruvate (PEP) to ADP, yielding one molecule of pyruvate and one molecule of ATP. Lack of pyruvate kinase will slow down the process of glycolysis which causes the disease known as pyruvate kinase deficiency.
http://biovision.com/updated/newkits/pyruvate-k709.html?gclid=CNrHtbq9m5kCFQ9SQgodKWmVDw
Some believe it's a metabolic disorder, but I like it to be here.
:hugfriend
p.s. I will send you a private message in the weekend... :)
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The big smile is because at my age, you will only remember the fun, trips,.... that you had in the days of college and will hardly remember how hard wasthe material you are studing, wait and you will see :biggrin
But i really wish you a good luck :wink
will be waitng for the message
manal
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The big smile is because at my age, you will only remember the fun, trips,.... that you had in the days of college and will hardly remember how hard wasthe material you are studing, wait and you will see
Manal is right Dore,I still miss my college days,even school days too,life was so much fun :) ,away from harsh practicalities. :sigh :sigh.
Zaini.
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:agree
I miss those days......................
Sharmin
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Here I am.
I do understand now where you are talking about. :)
I dunno where to start. Let's start by tuesday. At tuesday my niece Miriam and I went to the bloodbank. Her hemogline was very well, so was able to donate. A very well educated nurse did the needle stuff and I started to talk to her. I asked thousands of question. (exaggeration :wink) We went to the Albert Cuyp market (famous) and that's where I found NIGELLA! Today I bought the honey. I took her out for lunch to an Arabic restaurant which location is an old church. And I almost bought a sari. :cloud9
Everyone gave me permission to come along with year 2 to Brussel. Some egghead manager put an exam for year 1 in week 8. Week 8 has NEVER exams. It's only for cancelled lectures, stuyding and a trip for year 2. I have been so angry, but I let it go now. It are lovely people who are going. I can only hope I will meet such lovely people next year too.
I have also talked with my father and we will start a special diet for me. A vegetarian one and less iron. Maybe it will help for the iron. I haven't discussed hydrea yet. I have such idea that it won't work for pk def. though.
The next thing is embarrasing, but I think I must tell you. Last weekend I was so sad. I couldn't stop crying for three days. Now I keep myself so busy that I have no time to really think.
The last thing. I just read an article about our biological clock. Short version: Strict day scheme. Search for Martha Merrow. She wrote this Dutch article, but she must write in English too.
I know I forgot something, but what???
Take care & have a good weekend,
:hugfriend
Dore
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Dore ,
only a tip to avoid crying ,
Dont think or stop thinking about wat you can't change . that's the way to live happy ..
Umair
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Dore, :hugfriend
From time to eime,everyone can be sad,its not an unusual or abnormal thing,you have a great personality,i like you open attitude,you share with us things that people may call embarracing,but sharing with friends,be it anything,is never embaracing ,and we are all here for you :hugfriend.
Enjoy your trip :wink .
Zaini.
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I am not going because of that exam. The positive way of thinking is: more time for my exams. :biggrin
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Hi Dore,
I am glad that you shared your concerns with us. We are all here for you. All the best for your exams.
Sharmin :hugfriend :hugfriend
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more time for my exams.
That is so positive Dore, wish you all the luck :hugfriend
manal
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I forgot the joke of the week.
I have severe dandruff (Dutch: roos). I took a shower at wednesday night. Suddenly I could read the text on the shampoo bottle with my bad eyes. It is not called anti (haar) roos shampoo, but Anti Hair Loss shampoo! :rotfl
That explains a lot! My hair is falling out very fast the last months and it is so dry as a turtle. Also my dandruff acts like a sly little laugh. Has someone any idea how I can get my hair less dry? I will buy new shampoo today, but I dont think that's enough to get it less dry.
And I increased the dosage of Exjade to 1625mg. Hereafter I must increase the dosage once and then I am on the good dosage - if I dont gain weight ;) . My weight is 44 kilo at the moment.
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Dore, one tip to get rid of dandruff is to rinse your hair with a spoon of vinegar. Usually it will take care of this problem and will make the hair shiny
manal
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Dore,
A quarter cup of yogurt and an egg will make your hair totally dandruff free,i have done that,although its a bit hard to wash them :rotfl but your hair will be so soft that you won't be able to keep your hands away.
One more thing is henna or hina,if you can get powdered hina,make a paste in water and put it in your hair,no conditioner can compete that. :thumbsup
Zaini.
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Won't henna coloured my hair? :hmm It's blond and everyone is alway telling me that it looks beautiful. They always asked of I coloured it, but it is natural and it's done by the genes and sunshine (in summer).
Ok, pc is going off untill tomorrow morning 8 'o clock.
It's saturday; it's English Detective Night (if it is too scary and hide behind the sofa with fingers in my ears LOL0 I :heartred them! And a Scandan.. one. Dad is baking an English egg and mother tomate/onion stew. Dad is helping mum with the food - you know how that goes :yap It's good too see though, because I cook 3 or 4 times a week - non Dutch meals :food
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Definetly the hena will change the colour of your hair
Bon Apetite Dore :wink
manal
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Oh my bad :doh i forgot blond hair :biggrin i just had in mind dark Asian hair ,sorry :shy well egg and yogurt will do the job then :) .
Zaini.
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Oh my bad :doh i forgot blond hair :biggrin i just had in mind dark Asian hair ,sorry :shy well egg and yogurt will do the job then :) .
Zaini.
:rotfl
I have coloured my hair once purple :biggrin (7yr ago) Only the last 10cm. I went to the hairdresser last week, but I was a little too scared to let it coloured again.
I woke up at half past 7... Im making the test exam for tomorrow. It is boring & difficult. I dont know the stuff very well yet. This week we discuss the test exam, next week we got that exam at wednesday early morning.
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Good Luck Dore, i know you can make it :hugfriend
manal
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Update;
My father: monday they will do an mri-scan to see of they really can see aberration in his head. The radiologist (sp?) and his doc don't share the same opinion. Doc believe it is all fine. :candle
Me:
I went to the hospital to prepare for the bld transfusion at friday and do the monthly tests for Exjade. The nurse marked new things on the paper. I was so happy to which she had marked that I thanked her and went to the lab with a big :grin I am not sure what is going on; wether it is the influence of the Greek patients or doctor find out by himself or she made a mistake. New things: biliburin, calcium and phosphates! :thumbs (I only had to convince the nurse about marking ferritin).
Let's hope they aren't block at friday. Sometimes the doc must see them first before I do...
Ok, I have been ill for the whole day but I went to the lecture and now I will try to make my homework for tomorrow.
Dore
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Dore,
I hope that your father's results will be fine. I wish him all the best as he gets ready for his mri.
I am glad that you are getting the tests that your require for exjade. I hope that the results are all good. I hope that you feel better soon and good luck with your homework :)
Sharmin
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Hi Dore,
Good luck with your father's tests. :)
Is it phosphates or phosphorus the nurse marked,its good to keep monitoring Serum Phosphorus while taking Exjade.
Zaini.
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Well , no comments regarding the tests and no advice , just to say :goodluck to you and your father .. best of luck for the tests ...
Best Regards
Take Care
Umair
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My 67million try:
Hi Dore,
Good luck with your father's tests. :)
Is it phosphates or phosphorus the nurse marked,its good to keep monitoring Serum Phosphorus while taking Exjade.
Zaini.
Zaini, in Dutch is it Fosfaat. :dunno
Muchas Gracias, agradable amigo
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Zaini, in Dutch is it Fosfaat
Zaini , may i answer this ??? i think your answer would be "Yes" , bcoze i know it will be difficult for you to answer it :grin ... soo .. No , i dont know dutch , but its Lingoes Dictionary that can translate languages into eahc other ...
Dore ,
English Dutch
Phosphate = Fosfaat
phosphorus = Fosfor
Serum Phosphorus = Het Fosfor van het serum
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Zaini , may i answer this ??? i think your answer would be "Yes" , bcoze i know it will be difficult for you to answer it :grin ... soo .. No , i dont know dutch , but its Lingoes Dictionary that can translate languages into eahc other ...
Dore ,
English Dutch
Phosphate = Fosfaat
phosphorus = Fosfor
Serum Phosphorus = Het Fosfor van het serum
I am using the BEST (most Famous) dictionary; pc version. Let's see of he knows it better now. He knows it & understand it.
Not his user, because I am totally confused. But we will see what the report shows tomorrow or not. Too bad that the mobile compagny made a mistake and my iphone is still not working. My father orderded that one when I was in a comatose sleep, remember? [I am probably the only persion on earth who refuse to take this offer (outside that comatose sleep) I mean then I could let you all know it immediately. I have slept almost the whole afternoon and I will now sleep most of the night. I remember only know that I have no infusion yet, so it is gonna be an early&busy morning. I bought little tomaties, got a piece of cumcumbre and there is some salad left. I will send my father outside to buy a vegetarian turkish pizza, so I will make it too home. Although I am at the top of nauseau again. :-\ Owh, if they measure the wrong one I will talk with my doctor about it during my next appt. in May. As for the exams. They send me my results of last period today. I still don't understand how I did not see it before, but I got an other exam - a redo. This whole stupid bad adventure with my dad put my brains off. Honestly, this is the worst stress I ever underwent.
Sleep tight, Dore
p.s. Goed gedaan Umair. Moet ik je wat simpels leren? hmm, slaap zacht en ik wens jullie een goede vrijdag toe!!! :happyyes
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Well done Umair. Should I ask you a simple learning? hmm, sleep gentaly, and I wish you a Good Friday again
i translated it again hurrayeee ,,,
is it right ???....
Thanx take care
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Dore, ik hoop dat je misselijkheid zal snel gegaan. :wink
Dore,I hope your nausea will be gone soon .:)
Zaini.
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Jajaja, You all speak Dutch very well.
It was fosfaat and calcium. I did not see billirubin (spelling??). I refound the paper. Billirubin (spelling) is not on the list of results, it is not even blocked. It does not matter. What matters was that I had a hemoglobine of only 4.7ml/l (8.46 gd/l). So I wanted to have an other transfusion next friday (because of my exams). That wasn't possible because they are full. So my next is planned at the monday after next friday. I have my first exam at wednesd, then at tuesday (I found out about that at thursday, because college send a paper with my marks. I still don't know how I did not know that. What stress can do with an human!) and the last at friday 3th April.
Natrium 139 (235-147)
Kalium 3.9 (3.5 - 5.0)
Kreatinine 79 (50 - 95)
GRF (MORD folume) 79 (missing) - I have never heard of it before :S
Calcium 2.45 (2.15 - 2.65)
Fosfaat 0.83 (0.70 - 1.50)
LDH - IFCC 133 (- 250)
ALAT 18 ( - 35)
ASAT 18 (- 30)
GGT 14 (-40) I have never heard of this before
It looks all good, don't you think?
You really should have a look here: http://www.thalassemiapatientsandfriends.com/index.php?topic=76.135
:wink
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Dore ,
:congrats on good test results , Keep up the good work , you're doing well ... :thumbsup
Best REgards
Take Care
Umair
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Dear All,
I recently post something about making blood from stem cells. I can not find it and I don't have more time to do more search to find where I have post it.
Last night it was picked up by Dutch journalists and it was on teletext. Those daily awake bosses don't seemed too smart to understand what it meant or to call someone to explain it. It just disaappeared for the news!
Anyway, I did not understand the benefit of it too so I asked my father. When he heard I could only hear his voice and he sounded so happy.
If they can make blood from stem cells, they would be able in the future to do that also with your own stem cells.
If they succeed there comes a time that they can make those blood cells better than the ones your body makes....
In other words: It's a very good development!!!
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Dore ,
here's your post's link, regarding stem cell .
" New Research Sheds Light On How Stem Cells Turn Into Blood Cells "
http://www.thalassemiapatientsandfriends.com/index.php?topic=2697.0
yeah its a realy good Development , No doubt ...
Umair
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Hi All,
It doesn't seemed that my last blood transfusion has worked for me. I want to sleep day and night. My eyes falling to shut when I read longer than 10minutes. So studying is a very hard job. Nothing stays in my head. It might be a combination of low hgb and the stress of the last weeks. Who knows?
Anyway, today I went only to Amsterdam do give them blood for the blood transfusion at monday. I am a bit angry at them, because they only give me papers for hgb and hemacriet (in English?). Why not a completely blood work? Yes, I am curious about lymfocyten because they were high the last time. I want to see what happend to my trombo's and above all what is my RDW? ???
I went again through my bloodwork of the past 2 years. I came across something strange what happend between oct 2007 and march 2008. I haven't noticed that before because my father was very ill at that time. I will give you more information about so soon as that is over. My doctor ordered strange blood tests and I never saw the results - they were blocked for me.
I will give an example:
What is monocyt? Mine were pretty high in that time. What does that mean? (Doctor never did this test again, but the doc let them measure for 5 months long. Why?)
:dunno
Have a good weekend,
Dore
p.s. this afternoon I lost my sight in my right eye for almost an hour. I could not read at all. I was pretty scared, but it seems to be OK now. Owh, my right eye is my good eye. My left is bad and is also a lazy eye -that's how they call it.
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Dore
Here is a definition for monocytes
http://www.medterms.com/script/main/art.asp?articlekey=4426
As for your eye sight, is this the first time that happened to you, do you have any idea what is the cause for this, did you consult with the doctor???
Please take care and update us
manal
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Dore,
Did the sight in your right eye go black - or was it like a light flash which blocked a visual field? The later would indicate low blood pressure, the first one would need more investigation. Either way, you should consult your doc immediately.
Sharmin
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Dore,
Best of Luck for all of your treatments , and please Take Good Care of your self ... :goodluck
Best Regards
Take Care
Umair
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no, I did not consult a doctor. And also not the docs in my family. I keep waiting untill it went back to normal.
It's like a mist. I have had it more, but that was years back.
Thank you Sharmin, I got those light flashes daily. I never knew what they were. They are very annoying. No, thanks it did not went black.
:ty
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Hi,
I have had my last tx at monday. At friday i had a hgb of 5.5 mmol (x1.8 = gl/dl). So I couldnt have wait any longer. I have no idea what is causing this fast hemolysis. An hour after i was home the pain came, but it was gone when i woke up in the morning
I did make it to the exam at tuesday, but you dont want to know how. The pain visit me in the train. I had panadol, but no water. So i had to wait atleast 40min. Since then I have had backpain and chestpain. My chest pain has left me a bit. I dont feel it all the time, only when i take a very deep breathe. My back pain is still here and my joints are hurting like i dont know what. I am also very sleepy. I am glad it is really blue and sunny (18 degree celcius). So I sleep a lot outside (in the sleepbag). Yesterday I read out 'Thanks for the memories' by C. Ahern (Zaini). But all this illness does not let me studying, so I have decided to not make the exam of European Law at friday. I hope I feel better at wednesday 8th April so that I can attend the Dutch Day of Rare Disease. I have convinced one other pk def. patient that she should go, so I really want to meet her. She is actually the lady of 36yr who want a bmt. She has been told she is too old and her sister can not be her match :(
To be honest, i am very thankfull that I have a working Iphone now. Nevertheless I am going to put me off the notifications. I want to rest so much as possible.
Next week are there exams as well, but I dont have one. So I am gonna try to (do) rest (sleep), read and recreation (enjoy).
Owh, the 10th is my birthday, the 13th i celebrate my bday for family and the 16th I got an other blood transfusion. Dont be suprised as you dont see me posting during that weekend. I have decided to stop playing the hero and if they decided i should stay in the hospital because of the pain, I will do that.
Take all good care of yourself and your love ones,
Dore
p.s. tomorrow 20 degree, saturday 18 degree and sunday only 14 :( So my advice: enjoy the weather (if possible).
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Dear Dore,
Please have a chest xray if you are having pain and tightness in your chest, my dear. I hope that you feel better really soon. I am glad that you have decided to stay in the hospital if you have pain. We will miss you over the weekend.
I wish you the best with all of your exams, you are incredible - everything that you do.
I am very excited about your birthday - you will have to tell us all about it!
Sharmin
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hi, i read the leaflet of Exjade yet. I think I will take one pill of anti allergic medication tomorrow. Only to see of the thing will disappear. I feel very nauseau also, lots of hunger too (lol) and my dad talked about exjade to me. I think he already thought what I think now. at 14th april i have to go to the hospital to prepare for the transfusion. i will asked for an other full panel of exjade test and ferritin. if the ferritin is under the 1000 i will reduce the amount of it.
Sharmin, that is not possible. I am looking forward to the summer to have the t2* done. And yes, I will tell you all about my birthday. Hahaha, i really must thinking what kind of present I want. My parents and some family asked me about it. Books, books, books lol. (i need almost an other bookshelve LOL)
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Hi Dore,
i m sorry to hear to wat you've been through a few days ago ... i m back to site after a whole day break to PC , (bcoze my PC waas playing a joke with me yyeah this time it was a little difficult prob... it wasn't booting the cd finally, i re-installed and fixxed the prob .. anyways back to the topic.... ), soo i m unable to read all and long posts , as i m a little tired as well ( yeah, it was Tx day , but a good day ).... soo ...
Best Regards
Take Care
Umair
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Hi Dore,
i m sorry to hear to wat you've been through a few days ago ... i m back to site after a whole day break to PC , (bcoze my PC waas playing a joke with me yyeah this time it was a little difficult prob... it wasn't booting the cd finally, i re-installed and fixxed the prob .. anyways back to the topic.... ), soo i m unable to read all and long posts , as i m a little tired as well ( yeah, it was Tx day , but a good day ).... soo ...
Best Regards
Take Care
Umair
I am glad your tx went fine. Since 7 months (a guess) I am knock out of tx. I keep asking this question to everyone, but the people I spoke to are all saying they feel great afterwards. :huh
take care, Dore
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Thanx Dore :)
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To make a long story short: I did bloodwork in local hospital today: hgb 5.6 (7.5-10.0) & leudocyte? 25.5 (<10) remember i had a tx last monday! That bloodwork was done on friday before; hgb 5.5. Our conclusion is that i am fighting a virus. We called hospital in A'dam: i"ll meet my doc at friday.Indeed my birthday. If I fell well at end of week i will canceled that meeting. X
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Best of luck Dore,
I hope you feel wonderful on your birthday my dear :)
Sharmin
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Great, i typed here a message but it's gone. We do it short cause I use my iPhone. I had a tx today. The previous was on 10th April & my last big lab test was at 18th March.
My hgb was 5,4
My fe went from 1534 to 1012!!!!!!!!
My liverfunctions are out of the range again
My hormone is a bit down.
My fosfaat (use Dutch wikipedia and click on English) has dropped.
My calcium shows a big drop. I did increase my intake for a while but it seems I must take more.
My platelets has been always (500+) but now it keeps dropping. They went from 404 to 315. I have no idea why. I never heard that Exjade has this side effect.
Sunny wishes, Dore
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Dore congratulations on the ferritin! I hope that your tx went well.
I hope that your liver function, calcium and phosphorus are corrected soon. Small changes in ALT are common. I think that you platelet count is okay - but perhaps Andy can confirm.
Sharmin
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Congrats on low ferritin Dore.:)
I hope everything will bw in normal ranges in no time.
Zaini.
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I have talked with my father.
First of all I forgot to mention that my platelets has been always so high because I am divorced with my spleen.However the amount of platelets is still in range! (it's 300 and normal range is 150 - 400 ) My father told me his opinion. He says maybe my bone marrow has realised to that the ferritin has dropped very quickly and decided to work more slow. That would explain the fast hemolysis and the decreasing amount of platelets. However, this is only a thought. We don't even know of it is possible. But it is a nice thought and it explains who the troublemaker is.
I promise you that I will work hard to get the calcium level up. My stomach finally allows me to take chewable calcium tablets. Has someone any idea how much I should take? I will slowely increase the dosage so otherwise I will found out after my vacation.
I don't know how I can get the phosphorus correcting soon.
Thank you all for the congratulations. Remember, if I can do it then everyone can do this!!!!
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:congrats dore ,, for drop in yourr Ferritin
Way to go ,
Best Regards
Umair
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Great, i typed here a message but it's gone. We do it short cause I use my iPhone. I had a tx today. The previous was on 10th April & my last big lab test was at 18th March.
My hgb was 5,4
My fe went from 1534 to 1012!!!!!!!!
My liverfunctions are out of the range again
My hormone is a bit down.
My fosfaat (use Dutch wikipedia and click on English) has dropped.
My calcium shows a big drop. I did increase my intake for a while but it seems I must take more.
My platelets has been always (500+) but now it keeps dropping. They went from 404 to 315. I have no idea why. I never heard that Exjade has this side effect.
Sunny wishes, Dore
My fosfaat (use Dutch wikipedia and click on English) has dropped. --> big drop
My calcium shows a big drop. I did increase my intake for a while but it seems I must take more. --> a drop
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Hi Dore,
As far as i am able to understand you are talking about phosphorus,can you give us the readings of calcium and phosphorus?
How much calcium are you taking right now? Have you ever tested your Votamin D levels?For phosphorus here is a list of phosphorus rich foods.
Food Serving Phosphorus (mg)
Milk, skim 8 ounces 247
Yogurt, plain nonfat 8 ounces 385
Cheese, mozzarella; part skim 1 ounce 131
Egg 1 large, cooked 104
Beef 3 ounces, cooked* 173
Chicken 3 ounces, cooked* 155
Turkey 3 ounces, cooked* 173
Fish, halibut 3 ounces, cooked* 242
Fish, salmon 3 ounces, cooked* 252
Bread, whole wheat 1 slice 57
Bread, enriched white 1 slice 25
Almonds# 1 ounce (23 nuts) 134
Peanuts# 1 ounce 107
Lentils# 1/2 cup, cooked 178
Hope this helps.
Zaini.
PS.Don't take calcium within three hours after or before taking exjade,this will also cause phosphorus deficiency.
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off: this breaks my heart http://news.bbc.co.uk/2/hi/uk_news/england/kent/8026227.stm (http://news.bbc.co.uk/2/hi/uk_news/england/kent/8026227.stm)
As for calcium: I started to take it more regular :biggrin Soon I will talk with my doctor about this issue. We do think I need much more vit D than is prescribed at the moment.
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Hello, i deleted my other post because it was necessary to do. I had a blood transfusion at Friday; I get home in pain. A few hours later I had it ice cold (no fever) and i was in severe pain which I could not stand long so there was no choice but double dose pandadol. In 2009 I decided that I should try to endure pain so long as possible - I did not even take it when I had that nasty virus that caused my that horrible pain - because I took them every week a few times last year (deferiprone). These aren't new for me but still I haven't found someone who is able to tell me the cause.
Vacation, carpaccio & pills do not fit. My ferritin came up a little little bit, so I did not cross the magical border of 1000 And my platelets did the same.
Goodnight everyone, Dore
At Jos: so soon I feel better I will send you more info
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Dore,
I am really sorry to hear about your pain,i hope it gets better soon. :getwell
Zaini.
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I wish you tons of strenght Dore. Get well soon. (Mijn situatie is niets vergeleken bij die van jou, veel sterkte en beterschap toegewenst! No need to hurry up with an answer Dore.)
Take care,
Jos.-
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Hope you feel better now dear Dore :hugfriend
manal
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Yesterday i went to college, because you usually feel better when you around people. Not this time and it's getting worse. Normally I simple take myself together (Dutch prverb) and force myself to work. Not this time.
I got lots of pain, especially in joints, difficulties with breating and zero energy. If things are the same, i will go to gp. At Friday
I keep taking Exjade (I moved it to evning) but I refuse to take panadol. I will take one pill after I finish breakky and go back to bed.
Si, i really want to know my hgb. Maybe my body broke the new cells down when I became so Ill after tx. I really have no idea. Next tx AND meeting with doc will be at 22 May.
All typed on iphone
I hope to give soon a update with good news
Dore
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I am sorry to hear you are not feeling well Dore,i think you should see your doctor and also search into that why is your hb falling so soon.
Get well soon. :hugfriend
Zaini.
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:getwell Door ..
Best Regards
Take Care
Umair
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Thank you. Things are getting worse though. The doc wiil call my mother later this morning pain. I have lots of pain, tired and difficulties with breathing. I have no idea. I thought I had fever: only 35.9 celcius. Somehow I guesss that body broke all new cells down :s I'm scared.
Dore
P.s has anyone an idea?
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Dore,
I am really sorry to hear about your situation,i think you should check yourself for cytopenia ,got for a CBC to check if there in any abnormality in cell count,apart from i am really clueless as to why all this is happening,did you go to your hemo?
Please keep updating,
Zaini.
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Dore, I too agree with Zaini. Please consult your doctor. I hope you feel well soon :hugfriend
manal :hugfriend
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Tomorrow I got a consult at 12. If it's possible I will give an update. I am not sure since it's hard to get a connection in hospital :wink .
Take good care of yourself!
Dore
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Dear Dore,
I hope that everything will be okay. Please update us when it is possible. All the best.
Sharmin
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Dore,
Different possibilities like an antibody reaction, overactive spleen or just an old unit of blood, come to mind, but it's hard to say just by speculating. Hopefully, your next transfusion will last longer.
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Hi Andy ,
if i m not wrong Dore has a history of splenectomy .... and yeah , Anti-body reaction and old unit of blood could b a reason of that decrease in Hg ...
Dore,
ask you blood bank to provide you fresh blood and then note that if you Hg decrease's to the same rate , i hope n pray that after getting fresh blood your Hg will not decrease that much and it will b only bcoze of old unit of blood ... Best of luck dore, and please keep us upadated as much it is possible, praying the same , i hope your next Tx will last longer than previous onez ....
Best Regards
Umair
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My bloodbank is the best (plus first) of my country. They are even one of two who store the blood who have antibodies at all (the best blood but rare so people need it for themself)
I got this after reactons since 2 years but I got them always but immediatly when tx start.
I don't have a spleen. None of all complains are fit by one & the other way round.
Untill 2nd of June: a blood test, echo of upper stomach (hope this makes sense) and thorax (lung).. Then we will meet again. Owh I got pantozol (prontonpump??). It might by a "maagzweer". But I am right about my breathing problems. The good thing? I already take Exjade at night. The bad thing? 2morrow for first this new med. He thinks it will help me with eating. I can't eat now, you see....
That's all for now.
Dore
Ps it took us more than 2.5hrs to come home instead of usually <1hr
Ps this so don't fit with study ;(
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2: I dnt have a spleen or gallbladder anymore...other guess is gallstones... That's exactly why they took my gallbladder out in 1990.... Geezhh!
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Hello,
First of all: I am not so stressed anymore as I was.
Today I went to the hospital for the tests.
First I went in for the echo. It is very interesting to look with the doctor on the screen :rotfl. Ofcourse, all I know is that blue the blood that is flowing back, red that is flowing through and yellow/red is the heart?? I hope that some day I will able to see the common echo of a baby. That should not a lot easier to recognize!
After a while the doc asked: Did you have an operation? I said: "yes..... I dont have a galbladder and a spleen anymore. Doc: Oooooh :rotfl :woot :lalala :grin
He went further and rechecked it a few times. Then he went to my kidneys. Is it normal that this hurts like someone stab a fork in your side? (Yes, I am bit nervous about that). Only touching that area hurts from time to time.
Then he went to the office to the head to discuss the results. At the time I had sweep all the gel from my body, the door went open and the Head wanted to do it by himself.
To be short (and unofficial) the roads of gall (spelling? word?) are enlarged, but it is possible that's because I dont have a galbladder. The problem is that there are no other photos to compare with.
After this it was time for the blood tests. Three tubes; 2 purple and 1 green.
I had to wait for the thorax photo because the office was closed, but after 20 minutes we heard you can always go to the echo area...so off we went again. The wait was long, the photo short, and the conversation zero.
Tomorrow I will hear the results and I will tank up. Personally, my inner voice says that they haven't found anything. However, I am thankfully that I got a doctor who seems to believe that I am really are in horrible pain during those strange attacks.
Thank you,
Dore
p.s. From saturday to sunday I hope to attend a birthdayparty of an uncle and aunt. They celebrate it on one of the Frisian Islands. I say hope, because everyone is a bit nervous about how my body will reaction on this new blood transfusion.
My nickname Door is a sweet variant of Dore. The sweetest variant is Dori (or Doriii). :)
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Good luck with the tests Dore :goodluck
Zaini.
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Dore,
Wow, that sounds like quite an experience. I hope that your tests results reveal that everything is fine and that whatever ails you can be easily corrected.
Best of luck,
Sharmin
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Hi Dore,
wish you Best of Luckfor your test results :goodluck ...
Best Regards
Umair
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I have to be fast, because I should sleep already.
The doctor came to the chemo room. All he wanted to say in public is that my echo looks good. He didn't want to the discuss the rest in the room with all those other people. (my second previous hospital would not have care about this) He should call me later today, but he didn't. I was already told that he was very busy, because he was the only hemo/onco today. So, let's wait for monday.
Yesterday was a public holiday and today were all restaurants in the hospital closed! Really idiot, because they are always people in the hospital who need a real cup of coffee!!!. :rolleyes
Owh, he always told me that (like you know) all patients with hemolytic anemia's has strange inexplicable belly pains. I know, but this was a new calibre for me.
Take care,
Dore
p.s. sa/su I am off the internet due a family meeting/party
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My memories about my friend Nazli
She was also blind, because things went wrong during her birth (not enough oxygen). :( But she was a very intelligent girl. She lived with her little sister by a fosterfamily. The foster mother brought them always to the room, asked the nurse to call her when they were finished and went back home. I mean, how can you leave before those children have their infusion? The woman who always did it, was so bad in her job. She always poked you several times and then she would call help in from a real doctor who gave you the infusion in seconds. The boy of your small group told her after some time that she was not allowed anymore to poke him. It was a fight, but he won. :biggrin
For me there was a special protocol which said that only a real doctor must poke me, but.... I still remember that I turn the page of the local newspaper by my grandmother and I immediately saw her funeral notices. I lost the Dutch funeral notice over the years, but still have the turkish one. She was Turkish and her funeral was held in Turkey. I still have to ask a Turkish frined to translate this funeral notice.
There worked a fantastic nurse on the child department. After the infusion she gave us hot chocolade and cookies and sometimes a small present. Other nurses always thought that these presents were rubbish and she had always saved the stuff from the basket. And, she always whispered "I can do it better", but since 1990 (?) aren't nurses any longer allowed to give you an infusion.
There is one funny story I will tell an other time.
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Dore,
its soo sad to hear this :sorrow , ... may her soul rest in peace .. have courage ..
Umair
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May her memory always be in your heart :hugfriend
manal
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[Yesterday was a pretty difficult day, but a frien brought a small sunshine in my day to announce a little more about the new Shakira era. Music is good for the oul (so long as it is "good" music ofcourse)
But I wanted to say that I did enter a new chapter in my life during the night:
My right feet went from normal to a swollen and itching right feet. The only thing what came to my mind was: putting anaesthesia salve (Emla) on it and a towel on my feet so that I could not touch that feet.
When I told my father he wanted me to call the hospital. I refuse to do that, so he called a family member who is a doctor. I will be called back and then I must tell my story.
I do believe it's the Exjade. Especially that feet feels often numb and "sleeping" (= it doesn't get enough oxygen/blood flow)I know it's pretty strange, but my foot really act like this. On the other side: I have no prove that Exjade can cause this problem....but this problem occured after I started with Exjade. Accidentally?
Since 4pm yesterday I have a terrible nausea. So I just took an anti-nausea pill and then I will take the orange juice drink with 1500mg Exjade. Exactly 40mg/kg. I have plans to lower the dosage, if I will get good results back at friday. Does someone has any idea what my new dosage must be?
Muchas gracias,
Dore
p.s. Shortly after I post the message in Zaini's topic I heard the good message that my notebook was working again. I lost quite a bit, but I dont feel sorry. My pc works faster and I am going to take better care about it. My messenger is even working, so better communication. Hmm, it's a very old version so you can not send me files.
p.s. The Netherlands & UK having TODAY the elections for the European Parliament!!!
[In the Netherlands it's FORBIDDEN to held elections on Sundays!!!)
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Dore,
When was the last time you checked your ferritin,as far as i remember it was around 1200? if thats the case i think you should lower your dose,40 mg/kg is a very high dose,lets see what Andy or other moderators think about it.
Zaini.
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Dore,
[ its an opinion only ] : you're on extremely high dose , you must decrease it bcoze you have a history of allergies from Chelators ( Deferiprone, Desferal and as far i remember from Exjade as well ) and now you are trying the extreme dose of it .. 40mg/kg is the latest finding and i think it is for the severe ironn overload condition, you must go back on 30mg/kg dose .... i think that was working fine for you , so no need to increase the dose ...
about swollen feet : when i was having this probleme my doc told me to dip feet in warm Salt added water for 10-15 minutes and then spread cream ( vit-e cream or any cream ) it , ( i used olive oil for this purpose ) ... if it is the samething as mine was then i hope that, it wil help you ...
Best Regards
Umair
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Dore, I too agree that you should lower it to 30mg/kg especially that your ferritin is not that high
manal
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What has been said is correct. 40 mg/kg of Exjade is used when the ferritin is very high AND it is not responding to a lower daily dose. This dosage should be reserved for those cases only.
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Hmmm, this time I was the brave patient who accept doctor's order. I will play again my own doc.
I will weight myself now. Oops, I lost an other kilo. Even with clothes it's only 40,7 kilo. I guess my weight is 40,0 x 30 =1200. There are only pills of 500mg left, so I will go to 1000mg.
Hopefully I will feel better with this.
Muchas gracias,
Dore
p.s. Umair, do you mean salt water or soda water?
Edit: I have used 40mg/kg for the past 3 months. Recently I restarted with documenting the things what are happening in "Medical Land". I got sometimes I hard time to remember everything...
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Dore,
Soda Water for dipping feet :rotfl :rotfl :rotfl .. just kidding ....
Dore, i was talking abt salt and water , all you have to do is to take warm water in a tub/drum and then put Salt in that , and then dipp the feet in it for 10-15 minutes .... and after that take out your feet and cover them with a towel until they come to normal temprature , then spread any cream on that ( Vit-E cream or Olive oil , i used to spread olive oil ) ... feel free to ask if i missed anything ...
Best Regards
Umair
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Got it. Salt water is used to sterile things; so in this case probably an infection in the feet. I will do it after my meeting at Saturday eve. I wanted to say smth else but it slipped out of my mind.....
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Dore,
you're right , my doc told me to do that when i was having swollen feet and pple here sugested me to do an echo or mri of that to find if there's any clot ... but i were lazy to do that and that vanished with the therap doc told ... i dont know wat was that but i cured after that therapy ....
best of luck to you dore for appointements and lab results ..
Best Regards
Umair
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Salt water is used to sterile things; so in this case probably an infection in the feet
Dore, the function of salt for swollen legs is not to sterile but rather to get rid of the water retenion. The salty water will "draw" the water out of your feet. This is done through osmosis.
manal
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Tiold you I experience pain after blood transfusions? I found this, but I am not sure if they talk about "mine pain". If not, it may still an interesting clinical trial
Thalassemia is an inherited blood disorder that can result in mild to severe anemia. Regular blood transfusions, which refresh the healthy red blood cell supply, are one treatment for thalassemia. People with thalassemia often experience pain, but the exact source of pain remains unknown. This study will examine how pain varies during the blood transfusion cycle in people with thalassemia who are treated with regular blood transfusions.
http://clinicaltrials.gov/ct2/show/NCT00872833?term=blood+transfusion&rank=6 (http://clinicaltrials.gov/ct2/show/NCT00872833?term=blood+transfusion&rank=6)
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Orginally post in swollen legs:
Thank you. I had. The only thing what went really wrong, was that they couldn't find my blood in the fridge. It turned out that the lab had forgotten to match my blood. It took a bit longer than half an hour :dunno That's something I don't understand. Normally I must give my blood 72 hours before (now it was 48 hours) so that they can match the blood very good. Btw I am 99% sure that it's a fault from the nurse who did poke me. I remember now that she didn't bring my blood away as cito. She just continue sitting there.
Anyway, Tomorrow (friday) I will meet my doctor If someone has any thought about what I should ask too: 'Tell me'!!!!
Dore
p.s. the blood had a very dark red colour!! I couldn't stop looking at it. If you ask me; it must be super fresh blood... :thumbs
I didn't see this colour for a long, long time. The pain was minimal and i didn't need painkillers. Sometimes it goes well :)
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I have no idea where else I should post it so here it is. At this very moment I restart Exjade. It's in the solving process at the moment. First dose will be 375mg. I think for longer for a week since bt is next wed or earlier because I will feel poor anyway. Good thing: for first time in a loooooong while my hgb is 5.8 mmol/l (x1.6 = yours) so I have postponed it to next week. Part of my decision was based on forecast of extremely good weather. I spend enough of those days....
Why I take it during nights? I took it at the very first morning of my bike trip and all day I was sleeping or taking the bike and luggage in and out trains. (due bad weather we decidded to travel to Dresden immediate and start with biking there.
Hopefully I have soon the energy to visit the forum.
Best wishes, Dore
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:goodluck wishing u a fine Tx day and super smooth Tx :thumbs ....
Best Regards
Take Care
Umair
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Hello,
At monday I had still a hgb of 5.4. I was so glad it didn't went down too fast. This last blood transfusion went very difficult. I had so much pain that I cried in that room. Everyone wanted to comfort me and they let me take 2 paracetamol. It took a long time before it started to work.
I still don't feel 100%. I realize that this is my new way of life, but I can not accept it yet. Yesterday I went out, but thankfally there was a wall. I suddenly was very dizzy. It might be caused by Exjade. Fact is that I feel most of the time dizzy. (that's what I meant with new way of life)
I'm at 750mg of Exjade now. It's not even 20mg/kg - if I calculated well - but I am a bit scared to take more. I still take it in the evening, but it messed up the whole night.
Zaini. I can't find the right place but I talked about possible liver/kidney problems, right?
They only let me do a normal blood test at monday. Nothing else, I don't know why. At the time I found out it was already too late to go back. I still believe my organs had a hard time. I had pain around those organs and dark urine. I don't know what caused the last though. I noticed that I was a little bit too yellow at the beginning of the week. Now I know my hgb I can not believe that caused it.
I also received my tests of last week. It's good I didn't see the ones from the last time earlier. The paper with results is upstairs, so I might want to edit this later. So far I as remember where my liver and kidney functions in the very high normal ranges. (I took no Exjade). My ferritine went in 2 weeks up from 1050 to 1358. I guess it is around 1500 since I didn't take Exjade and nor the diet.
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Dore,
Are you monitoring your SGPT and Serum Creatinine regularly? its a mucst,plus keep yourself well hydrated,Lil Z's hemo asked me to give her as much water as possible,she said elevation in SGPT can also be caused by dehydration.
Zaini.
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I know Zaini, I know. I fight for it, everytime I get in contact with any medical thing, but sometimes I am so tired of this fight. At Monday I saw it too late. In two weeks it's time for a new fight.
I'm glad Little Z's hemo can also be a little mine. It's true I'm not good in the hydration job.
Thank you.
Dore
ps I forget to mention that I had a blood pressure of 80 over 38. Everyone was getting it on her nerves, but I felt ok at that moment. Bp is alwys low, but now I let of a lot of alarms LOL.
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Dore
Such a very low blood pressure can be a reason for all the pains and fatigue you suffer. What did the doctor say about it????????? It is very important to correct it, please update on this
manal
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Best of Luck Dore .. i hope your it will b in normal range very soon .. :goodluck
Best Regards
Umair
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Manal, never heard about that! If that could be the reason! Eureka, Eureka!
I know that the cold is caused by the low temperature, between 35.4 - 36.8. Idiot, but reality.
Thank you :-)
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Dore,
I hope that this can be resolved soon. Drinking more liquids will definitely be helpful.
Sharmin
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Hello Dore
I know that the cold is caused by the low temperature, between 35.4 - 36.8. Idiot, but reality.
I am not sure that we are talking about the same thing or not, but what i understand is that we are talking abut blood pressure and that you mentioned that it is I had a blood pressure of 80 over 38.
So i hope i understood correctly :huh
Anyway it is so this is really low. You can check this chart
Blood Pressure Range Chart Notes
NORMAL BLOOD PRESSURE
BP READINGS RANGE
HIGH Blood Pressure Symptoms -
Stressed, Sedentary, Bloated, Weak, Failing
Systolic - Diastolic
210 - 120 - Stage 4 High Blood Pressure
180 - 110 - Stage 3 High Blood Pressure
160 - 100 - Stage 2 High Blood Pressure
140 - 90 - Stage 1 High Blood Pressure
140 - 90 - BORDERLINE HIGH
130 - 85 - High Normal
120 - 80 - NORMAL Blood Pressure
110 - 75 - Low Normal
90 - 60 - BORDERLINE LOW
60 - 40 - TOO LOW Blood Pressure
50 - 33 - DANGER Blood Pressure
LOW Blood Pressure Symptoms -
Weak, Tired, Dizzy, Fainting, Coma
http://www.vaughns-1-pagers.com/medicine/blood-pressure.htm
Here are symptoms od low blood pressure
What are low blood pressure signs and symptoms?
When the blood pressure is not sufficient to deliver enough blood to the organs of the body, the organs do not work properly and may be permanently damaged. For example, if insufficient blood flows to the brain, brain cells do not receive enough oxygen and nutrients, and a person can feel lightheaded, dizzy, or even faint.
Going from a sitting or lying position to a standing position often brings out symptoms of low blood pressure. This occurs because standing causes blood to "settle" in the veins of the lower body, and this can lower the blood pressure. If the blood pressure is already low, standing can make the low pressure worse, to the point of causing symptoms. The development of lightheadedness, dizziness, or fainting upon standing caused by low blood pressure is called orthostatic hypotension. Normal individuals are able to compensate rapidly for the low pressure created by standing with the responses discussed previously and do not develop orthostatic hypotension.
When there is insufficient blood pressure to deliver blood to the coronary arteries (the arteries that supply blood to the heart's muscle), a person can develop chest pain (a symptom of angina) or even a heart attack.
When insufficient blood is delivered to the kidneys, the kidneys fail to eliminate wastes from the body, for example, urea and creatinine, and an increase in their levels in the blood occur (for example, elevations of blood urea nitrogen or BUN and serum creatinine, respectively).
Shock is a life-threatening condition where persistently low blood pressure causes organs such as kidney(s), liver, heart, lung, and brain to fail rapidly.
http://www.medicinenet.com/low_blood_pressure/page3.htm
manal
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Mine is almost always borderline low :( .
Dore,
Manal is right,low B.P does cause fatigue,tiredness and pains in the body,do pay attention to it.
Zaini.
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Manal 'the cold' is a dutch word translated into English what becomes senseless. I meant to say that I am always get it very, very cold during the first hour of the transfusion.
How can I pay attention to this problem?
I am wondering of this is related to my legs issue...?
I will start with the first, easy looking but not for me, "Drinking more liquids will definitely be helpful" advice. Btw what kind of liquids? Only water?
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Dore,
As i stated earlier that i almost always have low BP,so a friend of mine told me a home remedy,and guess what,it really really worked,my problem is that i sweat a lot,and especially in the morning when i am doing my household chores and in the kitchen while cooking,and what usually happened that by noon i was so dehydrated that i started feeling dizzy and light headed and my hands would begin to shake,and although i tried to drink a lot of water it didn't help that much,so what i did was i took approx 500 ml water,squeezed a lemon into it and a pinch of salt,and i kept drinking it through out the day instead of my plain water.And it really worked,i wasn't dizzy or light headed and i felt quite fresh,may be it replaced the salt i lost through sweating,but it did work :biggrin do try it.
Zaini.
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Thank you. I will try it tomorrow. Promised! It's gonna be a very hot day.
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If your BP is low, you probably do need a little more salt. Drinking water without also replacing minerals like sodium and potassium can make one sick, so if you're drinking a lot of water, make sure you also accounting for the increased mineral need, especially sodium.
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Thank you for your advice Andy.
I followed Zaini's instructions today. Let's hope it works. The taste is pretty good actually. I was suprised about that, haha! Hopefully I will have a good night of sleep in a few hours. Exjade(750mg) brought some insomnia to me.
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Yup the taste is pretty good :wink hope it will work for you.
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My fellow pkd friends are in very bad condition.
Little miss J had her galbladder out last tuesday afternoon. They said she would come home yesterday, but must now stay for an other week. She has very high blood counts in pancreas and liver. So I am very worried about her.
I've had those problems during my operation too, but I tought today they could give better care on this.
Little mister J had a blood transfusion last week. When he came home, he became very sick and his parents brought him to the ER. Blood tests were done, but all looks fine. Only his hgb was a little above 10. Last tuesday he was rushed again to the ER. Blood tests were done and all looked fine. Only hb dropped to 9.5 And he was sent again to home.
His doctor don't want to give him a blood transfusion, because he had one last week(I don't agree with this). Upcoming week they will repeat the tests and hopefully they will give him a transfusion.
The 3 year old toddler "told" his parents that his belly hurts. He wake up several times at night. They did an echo for that, but nothing was found. It's hard to communicate with little mister J, but it's sure his belly hurts - they only dont know where/what/how.
Both family can use good thoughts and prayers. I am very afraid for both of them. Little miss J's family doesnt live close to the hospital. Her mother stays continue with her and there is no one close to support her. Plus they are still waiting for the bmt results. They all hope her big sister is the right match.
As for little mister J's case, I can not believe that doesnt know what's going on or dont give him a little extra blood.
Btw his parent's saved his younger brother's cord blood. They are the perfect match, but doc doesnt want to do a transplant now. ( I have explain his parents the risks). I think doc's decision is based on his Exjade experience. I guess she wants his ferritine first come down so that liver/kidney enzymes stays in safe zones.
If you have any thoughts, ideas or I dont know what, please tell me about it.
Thank you in advance, Dore
p.s. my exjade counts were a bit high, but not too high.
p.s. II it's my grandfather's Birthday. He is turing 89 today! :)
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Little Miss J has an infected pancreas. According to her mother its a difficult infection to get fixed. She asked for prayers.
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Dore,
My prayers and wishes for both your friends,its really hard to see such young kids in pain,i hope they will recover soon.
Say happy birthday to your grand father from me :hugfriend .
Zaini.
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Dore,
I am also sending my prayers to both familes, I hope for the best outcome for them.
Happy birthday to your grand father Dore!!
Sharmin
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Thank you both. When I get a new update I post it here. Unfortunately means no news not good news.
Remember the mother who posted about (possible) bonemarrow failure. I knew her very well, but her message her was the last I get. I miss more Pkd friends. :'(
good night, sweet dreams
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Im in a hungry, so I only want to put something about about Little Miss J. Last night, ten days post operation, Little Miss J was finally able to eat something! Though they won't expect to see her leaving the hospital before next week. However, the first recovery is here! :smiley
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Glad to here that :yes
Zaini.
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Dore,
i know i m late to wish u and Miss.J good luckk ...but , wat can i say ..... okiey.. Good LUCK anywayz , hope that everything is going to be normal/fine and hope that everything will b fine n normal soon ..
Best REgards
Take Care
Umair
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Please, read my drumroll topic. You won't regret it ;)
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Dore,
i just red that , and have replied there ... Well Done, Dore ...
Best Regards
Take Care
Umair
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(Almost) Good Evening,
yesterday I was part of a research. Different than I thought, but Im for research. Bloodwork was done too. I was called and told that my hgb was 6mmol/l (9gl/dl) only FOUR days AFTER my last transfusion. I was pretty upset. However it is what it is. I only add a few extra checks and set a limit. If OK I got my next blood transfusion over 2.5weeks.
And I want to be a little more brave with folic acid.
Dore
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I'm stopping by to say hi and to tell you all that I won't visit for a while. My father had a very horrible car accident. It's a miracle he has "only" arm fractures. He underwent an operation. He is home now, but getting more and more Ill now it start to heal. I wrote only like that because people believe he's fine but he's not.
At Friday I woke up with a sore throat. I went to college waiting 3 hours for my last lectures and crashed completely down when I arrived home. Lying, sleeping and watching silly tv. If I try to stand my head is hurting so much!! I got it warm now but only since 2hrs. The whole time I thought I had fever, but I had a very low body temperture 34.6 -35.8 or slighty fever 37.2C. I won't have a bt before Friday. I'm back so soon as something really changed. Take care!!
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Dore,
I am so sorry to hear about your father's accident, i wish him a speedy recovery.It must have been a terrible expierence but thanks God he is fine.
I hope you can see a doctor to explain this low temperature and definetly it will be associated with a low blood pressure too. Please take care and update us as soon as you can :hugfriend
manal
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Hi Dore
i m sorry to hear about your father's Accidetn ... i hope he will recover fast and will be fine soon ...
a Get WeLL Bouquet for your Father :) .....
(http://img10.glitterfy.com/graphics/100/get_well_flowers.gif)
Best Regards
Take Care
Umair
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Sorry to hear about your father's accident,i hope he'll recover soon,sending prayers your way.
Zaini.
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Dore,
I hope that your father recovers very soon,
Sharmin
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Thank you. It's going to take a loooooooong time. 6weeks arm with plaster; bruises everywhere and 'headshake' (normal word?) and then therapy. He almost lost his arm (literally!).
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Update about me. I cant remember of post already about this. I reprated simple hgb test. It was 5.2 x 1.5 to get your measure. Its ok. This does mean its something else. Its first for sbout year to be sick by smth not caused by meds. (though i have a hard time with taking fluids.) I can't wait for Friday! Finally new blood. At wed (&thurs) I must travel with public transport to give matchblood. It scares me - I hope I make it safe.
I just had some broth and I feel so bad again! For days I had it cold and I had a low temperature. I'd to go out and see "the car" with my mother, move our stuff out and do the paperwork. When I came back from hospital I thought I was in Greenland; turned out I had a real fever. I just hope it won't get too worse. Such a waste of my week.
I'm sorry for rambling & complaining here. I hope you all are doing better!
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Only dropping a note: I extra love the donor of this week's transfusion. I am feeling AMAZING. Tansfusion itself went fantastci; no pains!!!
:hugfriend
Thank you for having me here! Now I must further with studying.
Wit love, Dore
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Happy for you Dore :hugfriend
It is amazing you can feel a difference between donors, shouldn't all blood bags have high HB in the time of transfusion???
manal
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Happy for you Dore :hugfriend
It is amazing you can feel a difference between donors, shouldn't all blood bags have high HB in the time of transfusion???
manal
I have no clue of the donor had a high hgb. Control is pretty good on that. Someone else suggested that it could be my "low" ferritine. I dunno. I cherish this moment. I still feel good, but probably not for long. I am facing two hard working weeks and then it's time for my next transfusion. At saturday I will attend my first congress out of the three. This one is for and from rare blood diseases.
PS In two hours I will get my flu shot! :wah I am thinking about putting emla on my right arm... :biggrin
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Good luck Dore :wink
manal
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Hey,
It's a good idea to put emla cream on your upper arm. It has been hurting since an hour after the shot, but not during the shot. The other advice: make your homework a week before the lecture :wink :rotfl.
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Hey,
It's a good idea to put emla cream on your upper arm. It has been hurting since an hour after the shot, but not during the shot. The other advice: make your homework a week before the lecture :wink :rotfl.
Good advice Dore :wink
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Hi Dore
sorry I missed your earlier posts. I am sorry about the accident. How is your father doing now? And how about the fever you had, is it gone?
Take care
Jade
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Hi Dore
sorry I missed your earlier posts. I am sorry about the accident. How is your father doing now? And how about the fever you had, is it gone?
Take care
Jade
Hey Jade,
My father's recovery goes slowely. Yesterday he did way too much, so I hope he will rest enough today. There was and is a lot of trouble with the plaster. It nearly killed his arm; lack of blood stream. Wednesday he has a new appt.
My fever is gone. I felt great for a week after transfusion. Then my allegies hit back in. I haven't had them so worse for nearly 3 years. I still should call the gp to get my sniff, sniff meds.
I'll keep you up to date. Got a week vacation next week....
Take good care of yourself,
Dore
p.s. I am party deaf at the moment. Both canal of eustasia (spelling?) closed itself (partly)... :(
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Enjoy your vacation! Its the good times that distract us from the bad moments! :-)
Love.
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Dear Dore,
I hope that things get better really soon and that you are able to enjoy your vacation:)
Sharmin
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Dore, probably the quick rise of ferritin is due to your illness cause i know that you didn't transfuse a lot since you reached the low levels.
As for the nose allergy i realy feel sorry for you and know exactly how awful it is cause my daughter suffers from it to :(
I really wish your dad and you a speedy recovery and do hope that you enjoy your trip as much as possible
manal
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Dore,
I am really sorry to hear that your dad is in pain :( sometimes i wonder how can doctors miss things like that :dunno
And i think you should investigate a little why your hb goes down so fast,and please try to be regular with your supplements dear :hugfriend.
Zaini.
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Dore,
Sorry to see you go through all this. I dont have any knowledge on this, but I hope things get better soon. If being negative helps sometimes, its worth it. :-)
Do take care,
love.
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Dore,
sorry,cant read complete thread , but ,,,, wish u and ur father all the best of luck health and everything .. may GOD bless ur father with the best of heealth and he will b super fine soon again ...
Best Regards
Take Care
Umair
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Dore,
I dont know much about the Vit D conversion, maybe someone else on the boards maybe aware.
About antibiotics - a lot of us have low immunity, and each time i feel REALLY awful, the first thing we suspect is some kind of infection in the body. If that is the case, antibiotics will turn me into superwoman overnight. :smileblue
Hope you feel better soon,
Love and Hugs!
:hugfriend
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Hello,
My last report of fe was 500. They will check it tomorrow again. I expect to see a lower level again. But that's not why I wanted to write here. It's pretty personal, but I need to talk about it.
Now I am almost deironed and expect to be the ruler of the iron from now on I start to look better at my life. I only want to see and feel it now how empty my life is. There aren't friends left who live close by me. I feel lonely and I have decided to turn it the other way round. Which is easier said then done and makes me feel very sad. I'll stop here because it hurts me too much. I only write it here to tell you that you must try hard to make friends and keep friends. Sportclubs are the best way to make friends (i think) but that's nothing for me. And I would like to know your view on this. Do you got any tips/ideas?
ps I am a student and our department is located in an empty area. It looks liks a students run immediately out the building to go home when the lectures are finished. I did do this in the past, but I know understand this is not the way.
I decided to post this en public, because I think more of us deals with this issue. When you have something to tell me, but dont want to post it here you may send a message to me.
I am a little more than a year here and you all helping me so much. Thank YOU!
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Dore,
I can understand what you want to say,i can only imagine what it must feel not to have friends,but rest be assured we are all here for you :hugfriend ,you are such a sweet person,who wouldn't wanna be your friend :wink tips about making friends,for me almost all my friendships started in school and college,we had a group of five friends in school,and we are still friends :biggrin although we don't meet much often,and one of us has moved to London,but still we keep in touch,and apart from all that we have those special memories of times we spent together,so its not too late for you either,i hope you'll find people who are sincere and love you for yourself :yes :goodluck .
Zaini.
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Hello,
My last report of fe was 500. They will check it tomorrow again. I expect to see a lower level again. But that's not why I wanted to write here. It's pretty personal, but I need to talk about it.
Now I am almost deironed and expect to be the ruler of the iron from now on I start to look better at my life. I only want to see and feel it now how empty my life is. There aren't friends left who live close by me. I feel lonely and I have decided to turn it the other way round. Which is easier said then done and makes me feel very sad. I'll stop here because it hurts me too much. I only write it here to tell you that you must try hard to make friends and keep friends. Sportclubs are the best way to make friends (i think) but that's nothing for me. And I would like to know your view on this. Do you got any tips/ideas?
ps I am a student and our department is located in an empty area. It looks liks a students run immediately out the building to go home when the lectures are finished. I did do this in the past, but I know understand this is not the way.
I decided to post this en public, because I think more of us deals with this issue. When you have something to tell me, but dont want to post it here you may send a message to me.
I am a little more than a year here and you all helping me so much. Thank YOU!
Dore
i cant imagine wut made such a nice person to think that way. 1st of all i really challenge wut u've said cuz v r all here for u. This is the place where u share things u call them very personal. Wut made u think that when zaini me and others r here u r so lonely. I guess cuz no one is actually around u. Well i'll like to share that Im too away from my universty n street friends and my lovely cousins.... the friends i have here in riyadh r too bz in jobs but that doesnt mean im lonely or dont hav friends... wut i do is -- make myself busy in things that groom ur personality or increase knowledge. Log on to net and U hav millions of millions ppl with U. But if that reallky doesnt work u know what i do... i walk into coffee or tea shops and there i get noticed ppl who r of my type. Sportsclub isnt a good place why??? i just sumtimes go into cricket ground without knowing any1 boy playing there and just to SEE the match and ultimately i end up in having new friends ...i made many friends in gym. Call ur close friends, chat with ur family or have a walk in the park or ur street to know who's doing wut ... a rare hello to the ones living nearby can give u real acquaintance. Isnt there any one when u go 2 transfuse? when there's no one i talk to little children there and really tease them to hear the best out of them ... hmmm... u can barge in to beauty saloon to get urself groomed , i cant imagine women keep their lips at rest anytime (my cousin even mimicks sleeping :rotfl ) . There are hundreds and hundreds way to overcome that but even then if u fail to find anything helpful just log on to thalpal :biggrin and get bz with me :yahoo
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no friends in uni????? outside the library??? no one in hospital ? then i make nurses my friend ;) ... btw wut do u study at university?
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Dore,
When i joined my university, i had no one from school joining the same university. And i had spent months not doing anything other than attending lectures as i am not very talented in introducing myself to others. Anyway, by coincednce, i joined the art club (each university has different club for students such as art clubs, reading &poems clubs, dancing, singing, sports, social activietis, theatre............)
The advantages of joining such clubs is getting to know friends who share the same hobby and then you find common talks that will be generated
Hope this helps :wink
manal
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Dore,
i know being friendless is very tragic, so try to be social......
definitely, when u speak out your problems with ur friends it relieves u deeply and gives u a sense that u r not alone....... i think we r all here friends sharing everything from our medical reports to our daily activities :rolleyes
i pray that u get sincere friends soon............
Abbas
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Same here , Dore .... i also dont have friends nearby me :( ... thats is the reason why i use that much internet ..... otherwise , i would like/preffer to go and play with my friends instead of sitting in-fornt of pc if i got some friends in my area :( .... all my cousins aare like friends to me but sometimes .... they also have many things to manage and cant give me 24 hours of a day :( .... that's why i spend more time using internet n making friends online .... but its okiey .... i never stopped looking around to find sumthing to keep myself busy but u cant keep ur self busy all the time with machines n books .... but its ok , i m fine n happy .... :( . oky got a go , its dinner time here ... c ya ..
Best REgards
Take Care
Umair
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Hopefully I will like it by them.
I hope so Dore, wish you all the luck and happy new year to you :hugfriend
manal
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Wow, Dore,
I totally understand these things, especially now!
I've hurt my knee badly, some ligament issues. So i will be resting in bed through New years,
Am i going to get lonely? YES YES YES...
Its hard for me to have friends, lasting ones at that too - because they don't really think we have health problems that are genuine. So i often get left alone! Like now!
Hope this situation improves and SOon!
Love,
:-)
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My apiologies for deleting some of my posts but I have no choice.
I simple wanted to post here that I would not have been so far with my life without you. I found a voluntering job, I started to study more like fulltime and working hard on the getting more friends part. I wont say things are going easier but I am somewhat happier. I slowely see the sense of these supplelemts and starts to take them more regular. So far three days in a row! I will get there where I want to be.
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My apiologies for deleting some of my posts but I have no choice.
I simple wanted to post here that I would not have been so far with my life without you. I found a voluntering job, I started to study more like fulltime and working hard on the getting more friends part. I wont say things are going easier but I am somewhat happier. I slowely see the sense of these supplelemts and starts to take them more regular. So far three days in a row! I will get there where I want to be.
No apologies dear, if deleting them relaxes you then I''m with you on it. Its your life, and every single alphabet of your posts is solely your property and right and you have the right to delete them. I personally believe that (maybe cuz i was just thinking of deleting my previous stupid posts :rotfl ) ... Just be happy ... best wishes on thal day
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Good luck Dore :wink
manal
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Thank you both. My consult with the doctor has been moved to 1 July. I am open for all suggestions/questions.
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So this Thursday I got a meeting with my doctor. That brings me by the question what should I discuss (and what not).
So please if you have any suggestions (how small though) share them with me. How more people think about it, how better the outcome of the meeting will be (or not but the subjects will be for sure!)
Thank you in advance!
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Update:
Me:
Mine feritin is again above 1000 is going up and up. I am five weeks of chelation now. My liver counts where more than 5 times doubled. I believe this was what stopped eating me and kept me nauseated. About two weeks I will repeat those tests and hopefully al is back normail. If not, I have no idea what the future holds for me...
Transplant:
One frined of mine has had her SCT in July. Her counts are still prety low and she is not yet making lots of progress. But she is emailing a bit more these pasts weeks. When I spoke to her she was still waiting for her counts to recover and doing labs one or two times ago. She had SAA; severe aplastic anemia.
My other friend is almost through her pre check-ups. She had a hemaferese (sp?) and almost passed out. I was so scared. But on the other hand, she gets one unit blood in 60min and now they talk 500ml blood in only 21 minutes from her! They have added two importants tests to her check-ups. Since I know her she complains about liver and spleen pain. So they will examine that on the same day was I will repeat my bloodwork. If all goes well she is taken in on the second week of September. She has thal intermedia/beta thal major and a family member as donor.
As for my chelation problem. I know I should be patient, calm and relax but sometimes I can not.
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Dore
Have you tried splitting the exjade dose to reduce the liver counts??
manal
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Yes, I have tried everything. We know I am allergic or my body behaves wrong on Exjade. But what I can do? I still havent restart but that has a reason. I know quitting is NOT a solution although I feel pretty much okay despite those frequent pains.
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Best of luck Dore, I hope other drugs will be released in the coming years :hugfriend :hugfriend
manal
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Dore ,
best of luck , Dore..... :) :goodluck
Best Regards
Take Care
Umair
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I have a call appt with my doc tomorrow. I almost forget that. We'll see what is decided. As for my friend; she started yesterday with the heaviest stuff.