Dear Heather
I believe that you are correct. It has been about 4/5 months now and the doctor told me not to get transfusions unless I really needed them. Two doctors mentioned this. I also read that it can increase risk for graft host disease. It depends on the situation. The doctor told me to consider getting the bone marrow transplant while the donor is available. I have decided to wait the full 6 months. It is scary not getting blood when you need it. Yesterday I had my CBC count done. I asked the doctor if I had time to go pick up my meds. I carried some bags and my body began to hurt (I used to be very athletic) Suddenly I couldn't breath and I became dizzy. My breathing stopped and I couldn't walk anymore. It was fortunate that a nice man helped me who worked at the hospital because no one stopped. It was a scary experience. So make sure his CBC counts are checked because a lack of blood can lead to a stroke or a heart attack. That was a very traumatic experience and I don't wish it on anyone.
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Originally Posted by Heather8773
I am sorry you have been going through all this. It can be a scary ride. But it can also be full of hope. Everyone here is amazing, Knowledgeble and supportive 
You said you are starting to see a rise in your plateletts. What about your other counts? From my understanding it may take 6 months to a year for counts to continue to climb after ATG.(I'm still looking into this though as my husband is most likely about to start ATG). Maybe someone can correct me if I'm wrong.
Anyway if your counts are starting to go up that's great! I think you said your about 4 months in?
We have been advised not to get platelets unless there are signs of bleeding or counts so low it's necessary. The reasons we were given included, they only last about 7 days and the more often you have plateletts infused the shorter time they help and your body develops antibodies against them faster. Point being get them only if you need them. With that said if you need them get them!
My advise, listen to your body. Look for signs of counts going down. Keep your Dr informed of any changes.
Keep praying courage, boldness, clarity, and peace.
Hope that helped |