Listed then Paused

It has been a wild ride. We met with the surgeon last Thursday who glances through my file, said I was extremely fit, had a great heart and signed off as ready for transplants. Easy.

Then, my Transplant Coordinator came into the room. She wanted one more blood test to check my antibodies, which would take a couple of days to process. Again. I have none. Zero. Zip. That is the good news.

So we waited through the weekend and on Tuesday, she phoned with more questions. After plugging all the information about tests and activities of daily living and everything else into the special program, it spit out my listing number.

Loosely:
A number 80-90 is probably someone on a ventilator in a hospital.
A number 60-70 is probably someone in the hospital waiting for transplants.
A number 40-50 is probably someone pretty sick waiting at home.

My number was 35.5. Very low. I won't be transplanted soon! As I deplete, activities of daily living change, numbers get worse, this number will get higher. Michael thinks I will get the call for transplants in June. My guess is September. It could be next year!

Today, the financial person phoned. I still have money in my Medicare Set-Aside and Medicare won't pick up the check for new lungs while this is still available.

I am on hold again. Off the transplant list until we can figure this out.

After I drove home from my doctor appointment, I phoned Medicare. They explained that the WC claim is closed and the Medicare Set-Aside is in my name. It is my money. It is a lot of money. Medicare never rejected anything that was to be paid by this account so it was seldom used. The Medicare woman was fantastic. She told me to write a check for the whole amount to my university hospital and hand it to the financial person in the transplant clinic. Then, FAX Medicare to show that there is no more in that account and they will take over paying for the transplants.

I immediately phoned the financial woman but she hasn't returned my call. I plan to meet her Wednesday after I have an echo cardiogram in the transplant clinic and hand over the very large check.

It just can't be this easy. I am worried something will go wrong and it won't be accepted. Then what? So for now, I am not listed.