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Thanks Birgitta
I am mainly getting information about the disease going forward so I can gain a greater knowledge base to help others and with MDS causes, etc.
Unfortunately my Dad passed away just over a month ago. I detail this is a thread I have started, My Dad is My Hero.
He was on Revlimid for about a year until it stopped working. He had previously tried Vidaza which never worked. Before the Revlimid he was transfusion dependent, but was fortunately transfusion independent for about a year with the Revlimid. I don't think he was ever on any drugs for his white count, which doesn't suprise me, mainly b/c he had so many other comorbidities. He had had 2 previous quadruple bypasses, diabetes, and many health problems.
He went into the hospital in the middle of December with which was eventually diagnosed as some type of pleurisy/pneumonia/lung infection. He had a lot of trouble gettting breaths and an extreme amount of weezing trying to get his next breath. I think now this could have possibly been Interstatial Pneumontitis, which I read could be possible with Revlimid and/or MDS. He survived this stint in the hospital (12 days), but it severely weakened him. He was able to go home but had lost a lot of weight and his reserves were really depleated.
He still had a sinus infection while he was at home and never could kick it. Halfway through January he started having severe headaches and had to be rushed to the emergency room. A CT scan was done and he was found to have subdural hematomas. His platelets were currently at 19. A platelet transfusion was done, but the platelets went down to 16.
Unfortunately the majority of the time after Dad was admitted he was nonresponsive/comatose. He obviously did not respond to the platelet transfusion. A lot of his other numbers were not looking good as well. With his platelets so low, he was a very poor candidate for surgical intevention to stop his brain bleeding. We knew Dad was honestly tired of fighting the disease and knew he was ready. We are just glad he was able to live as long as he did.
I wish you the best with everything Birgitta. Keep 'fighting the good fight'. Our Dad did and it looks as if you are doing the same!
Joe
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