For whatever reason, the fine kidney doctor people at Vanderbilt have never called me or my local doctor back with an appointment time. I tried calling again yesterday and left a message. Those of you who have read these tedious posts about my freakish swelling/discoloring/general deterioration know that I was waiting for an appointment with a specialist there while also awaiting skin biopsy results.
The bad news: No appointment with Vanderbilt. Maybe they just don’t like me. I’ve never done anything to them – honest. (Sure, I pull for my Bengals whenever they play the Titans, but that’s it.) Maybe it’s for the best. They might be really mean there.
(DISCLAIMER): In no way does this photo represent the average doctor at Vanderbilt. Generally, they do not walk around in bloody garments nor do they drill holes in people unnecessarily. However, some staff at Vanderbilt (such as the people working in the gift shops) do tend to wear blood-soaked scarves.
The good news (and it’s pretty good!): The skin biopsy confirmed (or at least strongly indicated) that this problem is a reaction to some medication that I take/took and not a weird, undiscovered disease. In addition to that evidence, a kind reader of these blogs sent me some information that indicates a very few kidney transplant recipients have had this sort of reaction when they take Rapamune. (As indicated in a previous post, I stopped taking Rapamune about a month ago.) The information also indicates that it may take 3 to 6 months after stopping the Rapamune, as opposed to a couple of weeks, before it gets better. If I understand it correctly, something bad happens (for lack of a more medical-sounding phrase) to the lymphatic system, but most of the people did eventually get better. So, hopefully I am on the right track and will see some results in the next couple of months. Also, my doctor has given up on Vanderbilt and is sending me instead to a kidney specialist in St. Louis at Barnes Hospital. I now have an actual appointment, and it is in mid-June.
In the meantime, I’ve grown to love my big fat purple swollen parts. I’ve named my abdomen “Big Lenny” and my leg and foot “Jake and the Fatman.” I’m also keeping busy corrupting my toddler daughter in the following ways:
- Teaching her to sing “The Boys Are Back in Town” – she insisted on listening to it three times in a row today on the way to daycare
- Teaching her to put her hands in the air and say (with a terrible and probably offensive Italian accent), “It happens!” whenever something bad occurs, such as a drink spill. I look forward to hearing that she has done this at daycare at the appropriate time of spillage
- Watching “Whammy!” on the Game Show Network whenever possible. I’m wondering if she’s the only two-year-old in the nation who says (in her best game show announcer voice), “It’s TOOOODDDDD NEWTON!”
Thanks again to family/friends/readers who have been so supportive. This is especially true of my wife, Allison, who continues to handle the stress of this situation like a trooper. I’ll keep you posted. Anyone who doubts that can just take a closer peek at my blog and the ridiculous fact that there are now NINE posts on this subject. Sheesh, when will it ever end?? Madness, I tell you. Finally, anyone who has been wondering what I look like as a purple, swollen version of my old self, here you go, but it’s not pretty: