A Swell(ing) Journey Part IX: Vanderbilt? Hello? Are You There?

15 05 2008

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:

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14 responses

15 05 2008
Taoist Biker

Sheesh. The way this has dragged out is unreal, but I’m glad that the hounds may be on a scent here…especially if it’s one that leads to Happy Ending, Midwest.

(I wholeheartedly support warping the next generation. I’m playing Iron Maiden in the car to school every day now, at my son’s request. I count that as a small victory.)

15 05 2008
Catie

The things you are teaching your daughter are valuable and will come in handy the next time a guest spills something at your house.

I’m glad that it seems you’re finally moving towards a resolution to all this!

15 05 2008
WC

Still think it’s the Rapamune. That’s my story and I’m sticking to it. Sometimes it does take 6 months. Also a recent study I’ve seen said the swelling you’re experiencing can occur in as high as 60% of patients..quite a high incidence of adverse side effect. Hang in there..no pun intended.

15 05 2008
romi41

I just hope that your eyebrows are more thinly groomed that Grimace’s…

PS: sounds like some great news and enlightenment, you’re on the right track! 🙂

16 05 2008
jeffsher63

I’m lucky as well; my wife has been FANTASTIC with everything I’ve/we’ve been through.

Regarding Rapamune and edema, check this out: http://health.groups.yahoo.com/group/kidney_transplants/message/30404

16 05 2008
Matt

Thanks again for info WC and Jeff. I’ve been checking out everything you guys send to me. It’s been very helpful. I’m just playing the waiting game for this Rapamune to be fully gone! Tao, Catie, and Romi, thanks for the well wishes. I’m truly hopeful of nearing an end on this posts!

16 05 2008
Sarah

I’m glad things are looking up finally! It must be a relief to know that there is some kind of answer, and that the answer doesn’t mean things are getting worse.

16 05 2008
Luke

Maybe Girlfriend and I can take on you and Lenny in doubles tennis (Jake and the Fatman get winners, of course).

On a serious note, maybe we should hit up a McDonald’s in Hilton Head so you can sign autographs. OK, maybe that wasn’t serious.

Get well…

16 05 2008
betme

Matt, happy to hear that you are FINALLY getting some info. I love that you are teaching your daughter great coping skills!

16 05 2008
jeffsher63

Congrats; your blog made the main WordPress.com page! (In Health)

19 05 2008
Mac

You are smart, funny, and persistent. So presumably is your related donor.If you’re gonna swap body parts it’s always good to pick a good model. Bouquets to your sister for her stewardship of that kidney and her courage and caring.
As for the Swel(ing) Journey part: like WC, our money is on the Rapa. It’s the stalking horse in this race. We’ve been with it since its clinical trial days. Like all potent meds it has its Jeckyl and Hyde sides. Now that you’ve changed mounts, let’s hope you’re riding Big Brown in the Belmont and in the home stretch. A shout out to all your fans in Bluegrass-land!

20 05 2008
Alyson

Glad to hear you may be getting some answers.

My son had to have pennies removed from his stomach at age 2 at Vanderbilt. They were wonderful, but then again, I’m accoustomed to small town podunk hospitals……

Glad to hear you’re raising the imp right. I just discovered Whammy and LOVE IT!

23 05 2008
Matt

Out of the blue, Vanderbilt finally called. So, I’ll probably be going there instead after all. They had some kind of clerical screw-up. However, the appt was so far off that I’m going with the St. Louis place instead next month.

16 06 2008
Transplant Day 44, UK Newsletter, Fired Transplantee « CHRONIC POSITIVITY - Life with Polycystic Kidney Disease

[…] Matt, who had a kidney transplant several years ago, has been off of work (FMLA leave) due to some major edema and rashes, and found out that he was fired from his job.  Not only did no one tell him he was fired, but […]

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