Poll: Blood Transfusions

All votes are anonymous, so if you would like to add something to your vote, please reply below.   


Just to explain my question a little better:

I know there are many Thal Intermediates that receive blood, but I also personally know some that don't receive blood at all, and they stay at a very low hemoglobin.  I'm just curious to know how many of you actually receive blood, and how many of you guys don't, so I can ask other questions.   

I'm 36 and have never had a transfusion. My hmg has always been below 10. The more I read, makes me curious if they could help me. Just wondering a few things:

Does your insurance cover the costs?

How long does it take?

How do they do it, thru an IV?


Thanks,

Jamie

Hi Jamie,
     Luckily I am on two insurance companies, and between them, they pay for almost everything. Transfusions are very expensive, and Desferal is also.  It is done through an I.V., and it takes approximately 6 hours for me to get two units of blood. How do you feel most of the time? Jean

I have Hemoglobin H Disease and my Hg level is at a constant high 7 and once in a blue moon, it hits 8.

I DID do a short transfusion therapy regime 2 years ago to see if it would help alleviate my symptoms, but my Hg count went to 9.6 and I didn't seem to notice much, if any, difference from the one-time transfusion and so my hematologist said that I might need constant transfusion therapy for me to notice a difference.

I know I'm at pretty low numbers, but I'm used to it (though admittedly struggling as well) and I'm also scared of starting transfusion therapy on a more permanent basis.

Hello Danielle

My daughter Priya is thal intermediate, she maintains her HB between 7.8 to 7.2 with hydrea and wheatgrass Juice. She had never received any blood transfusion but i am really confused whether we should start with transfusions, because she had bone deformation and  growth problem. she is between 35 to 25 % on growth chart.

I really need some guidance related to this, but i am afraid also that she will become completely transfusion dependent intermediate.

Regards

Harminder
 

Danielle,

I hope you are doing well,wishing you luck and joy.

ZAINI.

Harminder,

The decision on whether to transfuse is the most difficult question for thal intermedias and their parents. Because it is trading one group of symptoms caused by low Hb for another group of symptoms caused by iron overload,  it is normally recommended to not transfuse if the patient can maintain a hemoglobin above 7. The long term effects of transfusion and iron overload are considered to be worse than the developmental problems associated with low Hb. This is especially true during the child's development and puberty and is why transfusions are often delayed until adulthood and the patient is fully developed.

However, this can vary if the patient has severe developmental problems. Your doctor should be able to guide you on what the severity of Priya's bone deformation will mean and if it is serious enough to begin transfusions. I think you should continue to try to raise her hemoglobin levels by any means possible before deciding on transfusion. Transfusion dependency should be avoided if at all possible.

Yes, Mr.Andy it’s very true our biggest dilemma is whether we should start transfusion or not. But as you said, we should try to raise her HB by other means. And we will check with her Hemo about bone deformation and growth.

Thanks Mr. Andy for your prompt reply.

Harminder

I have thal intermedia and during my childbearing years needed to be transfused  often such as during both pregnancies, before any planned surgery and during and after any surgery. after having a hysterectomy at the age of 22 i no longer needed a transfusion( guess its because i no longer lost blood each month?)

Hi Nanajanet

I am glad that you are doing well.Can you pls. explain me What is Hysterectomy?

Love

Dimple

Hi Dimple,

Hysterectomy means surgical removal of uterus.

ZAINI.