Another funny note, he never lost his Medicare coverage when he was transplanted as a child. I believe he may be grandfathered in. I would like to preserve that if possible.
Was he too unwell? This does not really make sense to me. Has someone paid premiums all this time?
I was off Medicare at exactly 3 years post-transplant, and this has caused me no end of difficulty, not from an insurance standpoint. On my social security record it lists DOD for 1979, which has been widely interpreted to mean 'date of death'. It actually stands for 'date of discharge' as in the date I was taken off Medicare.
That being said, in my experience, anyone on their second or higher transplant should have no trouble keeping Medicare so long as they do not work. Since your husband was on COBRA, I am going to assume he had a job that was too highly-compensated to retain Medicare through disability. Are you suggesting that Medicare would be responsible for 80% of every health procedure he's had since his first transplant? Oooo, that gives me a headache just thinking about trying to unravel such a mess. If his insurance gets even a hint that they should not be responsible for payments, I would not put it past them to chase up reimbursement from 20 years ago. Sorry, I am just really confused how it happened that he was never taken off Medicare. I don't think Medicare laws have changed substantially that he would be operating under any different protocol, so I don't think 'grandfathered in' would come into play. I certainly was not told this from any social worker I spoke to, but Medicare is an endlessly surprising program, (to say the least).
Insurance is all so different - I would never buy in to part C or D because it requires so much calculation, and a bit of crystal ball consultation, to know which one is the right option. I would go with PPO prescription coverage unless it is outrageously expensive. If you are going for an individual plan, I would be curious to see how that turns out for you both as those are such minefields. Caveat emptor! And best of luck!