Transfusions

[usaf1125]

I have just had my transfusion 292, My Doctor has never seen any one in 30 years of practice have 292 units of blood. Is the anyone out there that can beat me, honestly??

[Neil Cuadra]

If you have a rival among MDS patients it might be Bob Carroll, former President and then Chairman of the Board of the Aplastic Anemia & MDS International Foundation. He lived to age 72 and had hundreds of transfusions, although I've been unable to find the exact number.

Here is a short bio of him that was read into the Congressional Record in 2006.

[Birgitta-A]

Hi usaf1125,
You are really a positive example for us! I suppose you have RA since you managed with only txs and EPO-drugs during 9 years with MDS.

I received 142 units of PRBC during the first 4 years of my disease but don't need txs since 2010 due to treatment with Thalidomide and Prednisone.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006

[riccd2001]

It's very good to hear about these encouraging experiences.

In December 2007 I was hospitalzed for about two weeks while many medical specialists tried their best to find out what was causing my severe dehydration and extreme physical weakness with daily weight loss of about one pound per day. It was my GP who became concerned about my Hgb level (90 at that time) and referred me to blood disorders specialist for a BMB. In March 2008 I was finally diagnosed with low risk MDS. Since then I've had 187 units of PRBCs averaging about 2 every 3 weeks. My life has its limits now, but I'm still going the best I can and every new day is a gift for me.