Once you get to a certain level of advanced healthcare needs, it starts to get very difficult to get the right answers in the necessary amount of time. Body systems can become exponentially involved and that sometimes means that one doctor does not have all the answers anymore. Joe's been there and is still there.
I do my best to be his advocate, but that means that I have to learn little bits about everything. It is difficult beyond words.
I don't blame the medical care, it's just a very, very complicated situation, and I don't see it improving, only becoming more so.
Sometimes I really don't know which medical discipline to call, and wasting time can be costly health-wise for Joe. Right now he has about 6 specialists that he sees regularly. I try to make sure they all know what the other is doing. Coordination is so important.
All of these things are very expensive, but what the answer is, to the expense question is an area I really don't want to go to.
My husband is alive, and with reasonable care he can remain fairly stable, but it requires close, timely and careful monitoring.
There are doctors who would rather not have a patient like Joe.