Poll: Blood Transfusions

Hi friends,

I have already voted in this poll, but i was wondering about the poll.

When it says every week, every three weeks, every month, more than a month it doesnt say how much you take each time. For example, I take two units of blood every three weeks.. but there are many thals in Maldives who cant take two units together due to various reasons so some of them take as frequent as every week and some a week and half, one unit each time.  What do you guys think about this?

U are right......i take 1 unit of blood every 15 days So twice a month......

I go every 4-5 weeks or usually when I feel the fatigue weighing on me.

hi all,

I am a 31 years old Beta thal. I had my first child two years ago and my pregancy was the happiest time for me. I did not have the morning sickness and the cramps like others do. I tried my best to maintain a HB of 7 & up thoughout the pregnancy and went for transfusions every 2 weeks. The Doctor who is treating me said that i can have a normal delivery but when at the last minute, I had to be operated. Everything is fine now and I have a very active daughter to keep me on my toes.

Now, I have my transfusions every 3 weeks and each time i received 2-3 bags of blood. My Pre tranX HB is between 5-6  and i still have my spleen.

Hi Nur,

Pre tranX HB between 5-6 not a good result with 3 weeks TransX gap and each time receiving 2-3 bags of blood.

It can be tolerated but that should be only once or twice. Better ask your doctor to let you come every 2 weeks. But still 2-3 bags are too much and HB should be more than 5-6.

I'm worried. You need to consult your doctor about this.

Take care, Peace!

Hi Nur,
       Do you get tired or sick a lot with your hemoglobin being so low?  Jean

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 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

Ayesha: do send me an email. everyone else who wants to are welcomed too. I'd love to hear from you guys..and i'll try to help as much as i can.  :hug

My blood type is B+ but the difference is in the thing they called an 'antigen'. i don't know much about it beside being difficulties in finding the right donor. I am myself finding it hard to believe that I made it through my wedding day with such a low HB. The most bizzare part of it is, me and my family has been calling up the hospital trying desparately to make sure that they understand my situation and hope that they can find the blood before the wedding day. It didn't happend, and during the ceremony (wedding), the phone rang...guess what, it's the hospital and they called and want me in the hospital for transfusion! It turns out that my blood was finally available during the wedding day...

I only went for ransfusion the next day with henna still clearly visible to every one and it caused quite a stir amongst the staff and patients   

....there is another story on the day i had my baby delivered. I have to be operated and there is no blood too in case something happened. Miracle once again...and I safely went through the operation without any unwanted incident.. It is scary to go through it all but when it's over, You find it a blessing that you get to expirience these things and survived. these things can make you realise that everything in this world is precious and appreciate it a bit more.

Nur: I cudnt find your email am sending you a private message, kindly give me ur email in the reply of message and you know what? by hearing your expriences I now belive more that GOD is up there and helping us and I know he will help us till the end (InshaAllah), am really happy to hear abt you I hope you live a long happy healthy life Ameeeeeeen!

I hope we all live a long happy healthy life Ameeeeen !

thanks for those kind words Ayesha..  :hug 


 

Nur,
     What an incredible story! How you could make it through your wedding, and then the birth of your child on such low hemoglobin levels, is truly amazing. Your are a very strong and brave person. Good luck to you and your family.     Jean