Blood Transfusion Program

Hi Everyone,
I have been trying to find out whether each country has a different ruling on this topic. Basically I have found that the acceptable level to be at for optimum management is around 10 upwards?

Going lower for me normally has me very tired and cranky, is this normal with everyone?
thanks
Roanna

Hi, Roanna. 

I cannot speak for everywhere else, but that's the way it is here in New York.  Hematologists do not want us to fall below 10 hgb, and try to keep us above that level (for Major's).

Ideally, Hb should be kept above 10.5, but in practice, this is impossible in many countries because of the lack of a reliable blood supply. I know many thals who seldom reach 10, even after transfusions. Much more effort by the national and international thalassemia organizations is needed to make the dream of an adequate blood supply a reality.

What a shame.  I wish more people would donate.    It's such a simple thing to do to save so many lives.   

Hi Danielle and Andy
thanks a bunch for responding!!!

I have always been fortunate that I remained over 10, but recently moved countries and have been told that it is acceptable to go down to 9. I have just started university and I can tell you that its problematic when I get to that level. In fact I am due for transfusion this week and have been falling asleep/ tired for the past week.

I am going to have to talk to the doctor here although I dont think that he will change his mind. Is there any guidleines publisehed that I can maybe take with me?

thanks again
Roanna

Hello,

Here in Toronto the optimal level of hg is 10 as well.

If you present a patient with hg of 9 or so then the blood transfusion is repeated in a shorter period of time to maintain the optimal level but it is still acceptable.

One thing for sure that they would not accept anything below 8.5.

Thanks.

Hi Canadian Family,
Thank you for your information. I guess that the confusion could also be because of the actual spacing of each transfusion. for instance if they agree that it should be done every four weeks then there would be the chance for it to drop under 10.

I will have to check as to the ruling/ my own hb levels this week when I go in.
Thanks
Roanna

From http://www.thalassemia.com/trans_2.html

Transfusion requirements Pre-transfusion hemoglobin is maintained between 9.5 and 10.5 to ensure a mean hemoglobin of 12.

After transfusion, the target is 12. If I can find the article I am thinking of, I will post a link. It gives the reasons why Hb should be maintained at these levels.

Thanks guys,
I know how I feel when i drop under 10 so I do agree that its better to remain within the guidelines. Sometimes its hard to get the doctors treating us to agree though as its simpler to just set appointments on an even pattern 

I intend to have a discussion with mine though to ensure that this does not happen again.
regards
roanna

I don't have much expierence in transfusion but i was told by one of the hematologist here that wanted to transfuse Ahmad is that she doesn't want Ahmad to stay below 8.

I know a couple of families here that also transfuse at 8 -8.5 so i guess this is the limit here

Manal

Hi,

Here at specialised Thal Centers they too try to keep the Pre-Tx Hb above 10 but in some govt. hospitals and centers they even let it go down to 7 or 8 again the reason is the lack of awareness. You spend a whole day at a camp drive in a university with hundreds of students and staff and get only  5 or 6 bags. (makes you pull your hair out )

I do agree with Danielle and Andy. The hb shoouldn't be lower than10 or the health will suffer. I have experience lower hb and i'll tell you  one couldn't survive a day with out feeling so tired panting and drinking so much water. Hematologist here don't like it be lower also, I wouldn't want to experience it again......