Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Sharmin on January 31, 2009, 10:05:51 PM
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Little A's hg dropped to 69 today. He had a cold for a few days - and he was due for his tx after 4 weeks on Wednesday Feb 4th. I am really worried. The blood bank is trying to get a match as soon as possible and we are waiting for their call. He has never been this low. Please pray for us that we will get a match and that his hg won't fall this low again - we have been through so much just to keep his hg high... I pray that all of that horrific treatment and torture pays off :pray :pray :pray
Sharmin
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Hi Sharmin ,
Dont wory , he will b fine .. Little A is in my thoughts n prayers . he will be fine and he will find a mtch as welll .. soo dont worry , i hope , pray and wish that his Hg will never drop to that low again and he will live a healthy life , he will b fine .... Take Care
Best Regards
Umair
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Umair,
Thank you so much - your words mean so much.
Sharmin
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I hope they calling sooooon! I hope his hgb wont drop further. Take care and I hope little A feels soon okidokie again :hugfriend
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Dear Sharmin, don't worry please our little A is a strong boy and he wiill be just fine. I am sure you know how a cold or a flu can cause this drop especially that it was close to the trasfusion time. How is he doing, do you feel that this drop has reflected on him or not ???
Please keep updating us
manal
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Thank you Dore and Manal :hugfriend,
My heart just dropped when they told me that his hg is so low. I really hope that it is due to the flu. He looks white and he complained about being dizzy. I don't know if it is due to nasal congestion or if it is due to the anemia - probably both.
I am walking around with the phone in my hand awaiting their call. I don't want to wait until tomorrow because I don't know if he is still having hemolysis.
I am praying that it is not the dreaded antibodies again. I never want that to happen again.
Thanks again my friends,
Sharmin
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Sharmin, i am praying for you both. i really hope they will call now :hugfriend
manal
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still waiting.....
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Andy,
As I await the blood, I am wondering if we are in any immediate danger if they do not find the blood soon. I cannot imagine that this can be good for him - being so low - but is it actually dangerous?
I am also wondering how this will affect the echocardiogram scheduled for February 10th and the T2* that is scheduled for February (12th or 13th?).
Thanks Andy,
Sharmin
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I don't think he's in any immediate danger. Intermedias live with that Hb level and my experience with one of my Maldivian brothers taught me that immediate dangers lie in hemoglobin levels below 4 (this guy has been admitted to the hospital twice because he "forgot" to get transfused. There are a lot of issues about why he does this). Right now, keep him hydrated, resting and eating nutritious foods. Fruits would be really good, as they will help keep his blood sugar up. I don't think this will affect the echo as long as his Hb is back to normal by then, but do mention it to Oakland in that contect to see if the appointment should be delayed.
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Thank you Andy. I will call them on Monday.
The hospital says that there isn't a match yet - but they will call us if the blood is found by 11pm tonight otherwise we will get the transfusion tomorrow morning.
This is really nerve wrecking. I just hope that there will be blood waiting for us for tomorrow morning.
Sharmin
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They have finally found blood - so my husband took him to the hospital for his transfusion. It is 9:30pm so he will be transfused over night. I hope that it all goes well and that he is feeling better when he comes home.
Thank you all for your continued support and prayers, :grouphug
Sharmin
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:clap Very happy to hear this.
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Thank you Andy, thank you also for answering all of my panicky questions today - your support and informative answers got our family through the day :hugfriend
Sharmin
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Oh My God,
I am sorry i missed the post yesterday,i was so tired that i couldn't keep my eyes open,it's happening a lot to me now a days.
I hope Little A is fine by now,Sharmin,the drop in his hb must be due to the cold,i am sure no Antibodies this time,my prayers are with him. :hugfriend
I have a clod myself and my head aches a lot,and i am feeling dizzy right now,so this all must have to do with cold,i am sure his low hb was due to cold.
Zaini.
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Sharmin,
I hope little A is doing fine now. But one thing i don't understand, why did it take long time to find matching blood? Because when i go for Tx, after giving blood sample, blood is arranged in 2-3 hours. Does it have something to do with exact matching?
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Hi Sharmin Sis ..
My Wishes and prayers are with you and Litttle A sis .. .dont worry he will b all-right ,,
he have a big Fan n lover following , and he is in the prayers and thoughts of tose who are inspired to him ,soo he will be all-right very soon . dont wory abt Hg i hope that drop would bcoze of cold and nothing serious will b behind of that drop in his Hg ... :getwell Little A ...
Best Regards
Take Care
Umair
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Sharmin,
Last night I was not so alert, but the situation looked like mine when I was little D. It is a pity that I dont have a calculation thing, but 6.9 (?) :1.8 = around 4? I dunno how it is with thals, but I had/got sometimes the luck it climbed up by itself after the fever. Blood = strange :wink
I hope he is feeling well now!
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Thank you all very much Zaini, Tariq, Umair and Dore,
He received half of his transfusion over night and he will receive half today. I am on my way to the hospital so my husband can come home. Thank you all your support means the world.
Sharmin
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Sharmin,
Don't worry Little A will be fine. He is being transfused and I think the drop in hg was due to the flu. Please keep us posted.
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Sharmin please keep us updated abt Little A :getwell Little A....
Umair
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Hey guys,
Thanks for everything. Little A received two units of blood - they were very little units therefore I am guessing that they barely got him up to a hg in the range of 95 - 105. We will get a blood test done either later today or early tomorrow to see what his hg is now. I am suspecting that he will need another tx this week.
He still has his cold, he had fever over night and swollen glands. The doctor felt that a combination of being near the end of his tx cycle - and having a bad cold/fever may have caused the large drop in hg. I guess we can only tell over time.
Everything else was fine and with some blood in him he is already active and fighting with his sister.
Thank you all for you supportive messages,
Love,
Sharmin
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Just wanted to let you guys know that Little A got home in time to watch the Super Bowl :wink :wink :wink
Sharmin
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Sharmin I'm glad you finally had a blood for little A.... I hope he will feel better now that he had a bt already. Take care and May God bless you and your family. :hugfriend
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Sharmin,
Last night I was not so alert, but the situation looked like mine when I was little D.
Dore ,
You are funny :biggrin Little D !!
Sharmin,
I am happy that Little A is feeling well now :hugfriend .
Zaini.
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HI Sharmin ,
i m glad to hear that got blood for transfussions, Little--A is back to home and doiing welll ...
its great to hear this , i hope he will recover his Hg very soon .. :getwell for little-A
(http://farm4.static.flickr.com/3195/2704235789_9921c92d69.jpg)
its a little sweet cupcake for sweet Liittle-A .
Best Regards
Take Care
Umair
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Dore ,
You are funny :biggrin Little D !!
Si, I had to make that joke :biggrin
Seriously, my parents have run with me several nights to the lab of the hospital because my hgb crashed under 4.0 (ml; mine level) so I do know the situation. The funny thing is that I never can remember anything, but I do remember those running crisis contests very well.
Ex-little D has decided that she wont have a transfusion this week, she will have her tx a month after her last. To be honest, I really cant walk the stairs up (my room is at the attic), but I want to know what my hgb will do. The last time it was at 5.5 (my level) for 3 weeks :huh.
I saw something of the superbowl at the news.
:getwell
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Sharmin, i am really so happy that everything is back to normal again :hugfriend All my love to you and A
manal
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Manal,
Thank you my friend :hugfriend.
Sharmin,
I hope little A is doing fine now. But one thing i don't understand, why did it take long time to find matching blood? Because when i go for Tx, after giving blood sample, blood is arranged in 2-3 hours. Does it have something to do with exact matching?
Tariq,
My son has a rare blood type - O- and he has several antibodies. Because of his history with antibodies the blood bank goes to great lengths in avoiding exposure to antigens that he reacts to or may be likely to react too. It usually takes a day - and sometimes longer to find matching donor blood for him :sigh
To get caught up - because of the large drop - he will be going in for another transfusion Wednesday. I hope that we don't have another drop like this one again.
Thanks again for your support everyone,
Sharmin
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Hi,
I hope Arman is fine now.I keep praying for all these lil ones.God is gr8 .Keep smiling and take care.
Marziya
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Sharmin,
Sorry to hear that your family had a rough weekend with LittleA's low Hgb....I am happy to hear that LittleA is doing fine now.
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Hey,
I have used a calculating thing and in my level is it 3.3 Your must must have feel terrible.
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Sharmin, how was the second transfusion today, did everything go well???
manal
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Thank you everyone for your wishes :hugfriend
Manal, we are still at the transfusion. It is almost complete. He looks really good today.
We will be doing various tests - one was done today - one tomorrow and one next week just to see if what happened this weekend was an anomaly because of the flue - or if he is hemolyzing due to the antibody again. Everyone's prayers are needed again - he has been a trouper through the very difficult treatments he has endured to stop the antibody reactions - I pray that the problem will not re occur. Please pray that this was just a one time thing :pray
Thank you all and love you :heartred
Sharmin
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Sharmin,
I'm happy to hear that little A is indeed getting his blood today. I hope all went uneventfully.
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I am happy that he looks good today Sharmin and i am sure that he will do good too in the tests. Please keep us updated. Little A is always in my prayers :hugfriend
manal
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Andy & Manal,
Thank you. I am glad that we were able to get his transfusion today as well. His doctor really wanted him to get the transfusion and the various tests, I am very glad about that. Thank you for the support Andy - it gives me the strength to be persistent so that Little A gets the care he needs :hugfriend
Thanks again friends, I will let you know what the tests indicate,
Sharmin
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Andy,
I am a little confused about one thing. For that last couple of months I have been noticing that the warm complex antibody is still detected when he is cross matched. The doctor is not surprised, and generally little A's tx are lasting longer than before, even without prednisone.
Is the rituximab just supposed to decrease the production of antibodies, not irradicate them? We are also getting genotype matched blood now - although would have been best if we were getting it before all of these problems ever occurred - I am hoping that that will prevent the antibodies from becoming to aggressive.
I am not sure of what to make of this. I suppose that I thought that the antibodies would not be produced anymore after the ritux treatment ??? ???
For now, I am just hoping that the antibodies are not present in large titers and that they are not as active as they once were. I actually hate the word antibodies now :raspberries I wish that these pesky auto antibodies would just go away and leave us alone!
Sharmin
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Little A had his transfusion. He received 480cc on Saturday and another 520cc today. We will find out tomorrow what his hg is now at.
I have another question Andy - we have a SQUID booked for next week - would this enormous transfusion increase his ferritin levels? We have been chelating a little extra (desferal 7X rather than 5X a week this week) and we will continue to do this in this coming week.
Thanks you,
Sharmin
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Sharmin,
He should be taking desferal tonight. This is a good practice for every transfusion. This will help reduce the amount of free iron circulating. I don't think a short term event would be reflected in organ iron measurements. It normally takes years for iron to build in the heart, but some extra chelation this week will still be a good idea.
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I doubt the autoantibody ever completely disappears but the goal is to keep it from being activated and this is why genotype matching of blood is so important. Better matching means fewer antibody reactions allo and auto. Just as with an allergy, another immune system response, by minimizing exposure, you can minimize reactions. Once the IVIG and Ritux got his system back under control and protected to some extent, the strategy becomes minimizing exposure to new antigens.
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Hi Sharmin
Good to hear that he has been transfused. I hope that there are no problem with the antibodies.
When there is a dearth of blood, is it possible that you or his father help with that or is it because you are both minors that your blood won't help?
Take care
Jade
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Andy,
Thank you for helping me understand.
Jade, neither my husband nor I are a match for my son to donate blood. I am O+ and my husband is A-, our son is O-.
These are our phenotypes - but immediately it tells us that our genotypes are as follows: mine O+O-, my husband's A-O- and my son would be O-O-. Our daughter is A- and her genotype based on ours is A-O-.
Sharmin
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Sharmin,
I hope antibodies will not re occur,Little A is always in my prayers.This problem of yours has really got me thinking,i am going to present this issue to her doctor,i wish she'll understand what i am saying and i hope the testing is available here .
Zaini.
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Hi Little-A ,
Wish you all the best for eveything little A , i hpe you will never face that bad antibodies ( wat ever that was ) ......... my Regards and wishes are with you always ,,, and be sure that u r always in my prayers ..... :goodluck buddy .... hope to hear many good news from you in soon future like drop in S.fe and many more ...... you have the courage to ROCK the world buddy , and keep me updating about your score in Ice Hockey ..... :cheer
Best Regards
Take CAre
Umair
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Umair and Zaini, thank you so much for your wishes.
Yesterday, before his transfusion his ferritin was 1249 - which is really good. I hope that the additional transfusion yesterday did not increase it too much. We are going to keep chelating him everyday as much as possible in order to get it down further. I hope that the SQUID reveals that his iron levels are low. At the end of the day, even if his transfusion requirement remains a little high - meaning that he needs to transfuse every three weeks - the important thing is to keep the iron levels down. I hope that we have gained control over the iron now. Of course I will post the result from our hotel as soon as we get the results!
His hemoglobin today was 146 so I am hopeful that this transfusion will last him for a while.
Andy,
Before yesterday's tx his doctor did some tests to determine whether he is hemolyzing excessively, below are the results:
hemoglobin Monday was 108, hemoglobin on Wednesday morning was 103
Albumin 34 (normal range)
direct bilirubin 6 (normal range)
total bilirubin 26 (high normal is 19)
ferritin 1249
Do these results tell us anything? It seems to me that the hg drop was small - and the bilirubin and albumin levels were not significantly elevated suggesting that there wasn't any serious hemolysis going on. Do you agree? Thank you,
Sharmin
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Sharmin,
Do you have previous bilirubin test results for comparison?
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Andy,
I don't have previous bilirubin results at this time. If the hospital has not thinned his chart then I will be able to look it up on Tuesday. His eyes have been red since the 2nd tx, but his hg the day after his tx was 146. He will have another cbc on Tuesday before he gets his ivig. He will also have an echo that morning - and I am praying that the results will be good. This time he has been transfused before doing this test. When he was tested last spring his hg was very low.
I am praying that too much hemolysis is not taking place. Having so many tests planned in the next week has me nervous, especially because of the recent drop in hg. I hope that everything goes well, I don't know how much more my nerves can take.
In this week we will have an echo, SQUID and T2* - along with numerous blood tests. Our last visit opened our eyes to how many things needed to change in respect to his transfusions and chelation. He was transfusing too much and his iron levels were too high. I am now hoping that these changes will yield positive results.
Do these results (hg, albumin, bilirubin) suggest anything?
Thank you Andy,
Sharmin
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Sharmin,
The only result that raises any question is the bilirubin, but if it is not significantly different from previous tests, it would be of no concern. It is a bit high but that is fairly normal in thals.
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Sharmin,
I hope everything will be ok,please be strong,i wish you the very best. :hugfriend
Zaini.
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Thank you Andy and Zaini :hugfriend
I think the blood test on Tuesday will tell a lot too. His eyes don't appear yellow - which is something that his doctor told me to watch out for. He also told us to watch for a change in his urine color (if it is brown or darker than what it usually is with desferal) as that would be a sign of hemolysis.
The medical staff in Oakland is amazing and it is much easier getting information from them than it is getting it here. The records that they keep are unbelievable. They have asked for a bilirubin each month, maybe it will be easier for me to get his bilirubin levels from them.
Sharmin
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No yellow in the eyes is very good so I doubt there is anything unusual going on with hemolysis. I am really looking forward to hearing the results of his upcoming tests. I considered asking about combination desferal and Exjade at the NYC symposium, but thought that perhaps we should wait to see more results of this small trial, and also didn't know if I would be announcing something that shouldn't yet be announced.
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Andy,
Personally, I think that the combination has helped us get the iron levels down faster than using one chelator alone. Using Exjade 7X a week has allowed us to get away with 5X a week of desferal. If we had desferal alone he would need to be on it much more in order to get his levels down. The last ferritin (1249) suggests that the levels are coming down. His appearance (as you have seen) also suggests that the levels are down.
Sharmin
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Oh Sharmin My love and thoughts are with you both.
I do understand your fustration.
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Andy,
His total bilirubin in October was 14 (measured during the time that he was able to last 5 weeks without tx). January 5th his bilirubin was 21 and Wednesday February 4th his bilirubin was 26. Normal bilirubin range is (0 - 19umol). The direct bilirubin value is normally 5 this time it was 6 - but it was within the normal range (0 - 7umol)
Does that sound high?
Thank you Andy,
Sharmin
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Andy,
The hemoglobin today is 124. It dropped from 146 to 124 in 5 days. I hope that any further drop will be slow so that he can last 3 to 4 weeks before needing another tx.
How does this sound to you as far as hemolysis?
Sharmin
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Sharmin,
The hemoglobin level of 146 may not have been quite accurate as it would have meant a 4 point jump after his transfusion, which doesn't seem right since you should only see about a one point jump for every unit of transfused blood. Because the blood volume is increased right after a transfusion, the immediate measurement may not be totally accurate. The state of hydration of the patient for each test is also a factor. His current Hb is in line with what I would expect at this point after the transfusion.
His bilirubin level may be related to his recent illness so again, I wouldn't make much out of it yet. If he has a sudden drop in Hb then I would be more prone to believe that it is the result of hemolysis.
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Thank you Andy.
Yes, that bilirubin was from Wednesday morning when he was still recovering from his cold. I am hoping that it won't be as high now. We leave for Oakland tomorrow afternoon, the echo was done today and I am hoping that the results are all good. I will also ask Oakland about phosphate deficiency and what they have noticed.
Thanks again Andy,
Sharmin
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Hi Sharmin ,
i dont know much abt and wat can i say abt is to wish you allll the best . believe in one thing everything will fine and our admireable su[re lil champ will b fine . take cares
May God Bless you with the better than the best and more than your aspectations , just keep praying and asking for more ...
Best Regards
Take Care
Umair