Discussion Forums > Thalassemia Major
Poll: Blood Transfusions
jzd24:
Hi Nur,
Do you get tired or sick a lot with your hemoglobin being so low? Jean
Mei Ren:
My sis and I don't transfuse anymore... Don't know why or how it happened it just did.. :dunno
We both had splenectomy, mine was when I was still in junior high (1994). And my sister had hers a year after mine.
Nur:
Dear Sajid and Jean,
I have no choice other than what I am receiving now. I have a rare blood type and this is the best that the doctors can do. If i'm lucky, i will receive more than that but usually the blood are hard to find and i am mostly feeling so tired. It really is an obstacle to me. Imagine on my wedding day, I have to go though it all only on a HB of 5! A truly memorable day i should say for both me and the medical world if they would want to study in the miracle daily life of Thalassemics!
I feel miserable when my HB is so low. Negative thinking would come and i am mostly sad and becomes angry easily all the time even for a small reason. I hate it. I tried to contol my bad feelings thinking that it is just a normal thing if i'm not that tired but that doesn't really works. I spend my time laying down and be useless. A hard way of living, and I can't have a productive life.. I mean, how can I work and have a future as an indipendant women if i can't even sit up for more than 30 minutes? :( I am myself worried. And to have a daughter to take care of, I can't imagine how my future will be.
The strange thing is, I feel hungry most of the time. I can only eat a bit each time so I eat my meals often. Does anyone else feels easily hungry too?
Nur
Mei Ren:
--- Quote from: Nur on November 04, 2006, 03:09:47 AM ---I have no choice other than what I am receiving now. I have a rare blood type and this is the best that the doctors can do. If i'm lucky, i will receive more than that but usually the blood are hard to find and i am mostly feeling so tired. It really is an obstacle to me. Imagine on my wedding day, I have to go though it all only on a HB of 5! A truly memorable day i should say for both me and the medical world if they would want to study in the miracle daily life of Thalassemics!
The strange thing is, I feel hungry most of the time. I can only eat a bit each time so I eat my meals often. Does anyone else feels easily hungry too?
Nur
--- End quote ---
I'm just wondering what is your blood type? That's really amazing you survived your wedding day with the Hb of 5...Once my sis had a Hb of 5 she already had a mild paralysis.
About your question about being always hungry, you might want to check your blood sugar. That was how I was diagnosed to be one.
Ayesha:
Mei Ren am really happy to see a patient who no-more needs transfusion and I pray that you and your sis never needs a transfusion in ur life Ameen and please pray for the thalassemics :) every thalassemic is waiting for this day! and I know that day will also arrive (InshaAllah)
Nur: can I contact you on msn or email? I wanna know these pregancy issues, am 19 years ago and am getting treatment from a endocronologist but i want to prepare myself for the future, can u please guide me?
Take Cares, Bye
-Ayesha
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