Susan, my dad was diagnosed in early 2002.
While we’re disappointed the Aranesp is no longer effective, we’re happy Revlimid is now approved and – God willing – our insurance will cover most of it! (Pleasepleaseplease the expense is so daunting!)
Individual reations and prognoses vary a lot from person to person. I know how scary this news can be, but don’t feel your dad has been handed a death sentence – treatment options, while limited, are so much better than they used to be.
There’s no question the disease is degenerative, but many MDS patients appear to adjust and live relatively normal lives. One of the main worries you have with the anemia is keeping the immune system in as good a shape as possible so the person can fight off infections and secondary illnesses.
I think it’s key to help your dad eat right and attend to his general health. Try to eliminate as much stress as possible in his life. I imagine the gout is unrelated to the MDS but you should probably ask his doctor.
BTW, Dad’s MDS was discovered while he was in the hospital for a heart attack. He was in very poor shape at the time, but rebounded to continue working part time and enjoying other activities. He gets tired of getting tired but at his age, he would be slowing down a bit anyway. It can be very frustrating for him but he just backs off when he gets too fatigued. The biggest problem I have with him is declining appetite. He’s a picky eater anyway and he often feels too tired to eat right.
Truth to tell, as much as I worry about dad, I would be far more devasted by Alzheimers or another disease that would diminish his essential “personhood”. So I now treat my time with him as something very precious and I’m grateful his illness so far is not physically painful or totally debilitating. He’s had 4 pretty good years and I hope we have several more.
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