[Sally C]

Hi again Heather,
Right now my husband is doing amazingly well especially considering he needed about 55 RBC/platelet transfusions for two years in a row - and was at one time on his oncologist's "death list". The Promacta really worked miracles for him as he has been transfusion independent for about a year and a half now. It helped his RBC's as well as his platelets. And he was a very brave soul as he was the first in the MDS/Promacta clinical trial at NIH.
It took 6 months from when we found out that Don had a problem to get a firm diagnosis. He started getting transfusions about 4 months before we got his diagnosis of MDS at NIH in Bethesda.
I think with any type of disease or tragedy it takes time to get our brains around the concept. But over time you just seem to adjust to the idea - especially as you are dealing with day to day living as well as doing what needs to be done regarding the disease. It just slowly becomes part of your life and psyche. And I think your husband will get used to the idea of having someone else's life saving blood in him. They are very careful these days about transfusions. Also they have made and continue to make great strides in dealing with bone marrow diseases.
The forums are a wonderful place to go as there is so much support and knowledge - and you can see that people are going on with their lives in spite of the disease. The participants are always there with answers to any questions they may be able to help you with.
I e-mailed our research nurse last night asking about PNH/Promacta trials so I should hear from her today. Once I do I'll post what she has to say.
I don't know if you and your husband are of people of faith but if you are, putting your husband's life in the Hands of the Great Physician is about the best thing you can do.
I hope all this helps. Give your husband my very best wishes and you take care of yourself too. I don't know who it's harder on - the patient or the caregiver.
God Bless,
Sally
Heather, I just heard from NIH. Our research nurse said there were no PNH/Promacta trials that she knew of. But there could be trials for PNH. She suggested to always check out clinicaltrials.gov.
Please keep us posted!