Theresa, I am so sorry to hear about your father. This can be such a frustrating disease. If it’s any consolation, know that we family members and caregivers understand your pain.
My dad was diagnosed in 2002. He got along very well on Aranesp for almost 4 years and was transfusion free – it just stopped working for him in February. He is on Revlimid now but experiencing some other problems – mainly transfusion resistance. I’m very nervous, not just about the Revlimid therapy (which is more or less a last ditch effort) but I’m also afraid an opportunistic infection or complications from his kidney failure could throw a wrench into the works (guess you would say a “spanner” in GB). He was doing so well up until recently that dad was able to continue part-time work – at age 87. Now he’s fading away…can’t seem to keep his HG up above 8. Even with weekly transfusions he keeps falling to 6-7 a few after the tx.
Sounds like you had a very long, frustrating road with your dad. I know how crushing it can be to have hope and then suddenly feel like the rug is pulled out from under you. Just remember that MDS makes can make patients very vulnerable to other problems.
I hope you find some peace.
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