Now that the mad dash through the holidays are over, I thought I'd allow myself some time to tread water. It hasn't exactly turned out that way, but at least I am getting things done in the new month of the new year that I've needed to attend to for some time. As I grow older I feel more acutely the energy I deplete that I won't get back, thanks to vHL.
Three days before Christmas NIH sent some bad news via email. I particularly commend them for their timing. They 'can't' pay for Excy's airplane ticket to accompany me up there for my annual tests, and, of more concern, they claim they can't perform the surgery to remove the kidney remnant because they're 'not set up for dialysis.' Since this has been the plan for the past 5 years (since they were responsible for my losing my right kidney), this crushing blow results in adding a $100,000 to the cost of the transplant. (A kidney transplant in this country is $200,000 with an additional $6000 for meds a month until they find the 'right' cocktail of drugs for your body -- NOT covered by medicare). That's a hell of a ho-ho-ho. We are still in negotiation with NIH so not sure -- I do plan to go up there in Feb -- I would like them to look me in the eye to tell me they're throwing me under the bus.
For now, I have been taking it day by day and accomplishing one project a day I have needed to do, and I am trying to keep my pact to myself to do some form of exercise every day, which really helps. I intend to go to everyone's blog to visit, since I haven't kept up for awhile.
I hope everybody has been having a good year so far. Thanks so much for stopping by this blog. I really appreciate you. (Smiley face here). I will get back to my usual snarky posts soon, I promise!