I’ve been back home for a week. Since I left Chicago, the folks at Dr. Burt’s office began working with my insurance company to get this transplant approved. My insurance company made a request that I return to Chicago for more tests – now these are tests that I would have done anyway, but they would have been done much closer to the transplant date. The first week in April I will be returning to Chicago for blood work, x-rays, EKG and pulmonary function testing.
Coincidentally, I got a call from my insurance company yesterday from a “Transplant Nurse”, David. He is assigned to me and will be my point of contact throughout this process. He said he was required to tell me that “just because we have approved to pay for the testing in Chicago next month, it doesn’t mean we will approve the actual transplant”. I try to take these sorts of things at face value and I know that legally they’re probably required to say such things, but this has me freaking out. From riding high last week and seeing light at the end of the MS tunnel to doubt and wondering what life is going to be like in a wheelchair 10 years from now. Why did insurance companies become the people deciding what kinds of treatment we should be doing or not doing? The doctor recommending this transplant should be doing that. Right?
Anyway, I booked my flight and hotel for April. There are two conventions going on in downtown Chicago and the same time and my hotel rate went from $100 a night to $360 a night. Fuck! This trip requested by my insurance company has already cost me $1200!