Rabe family, Sault Ste Marie MI, c1983
Circa 1983. That’s me on the left, then my bearded brother Karl, my brother James standing, and my sister Clare. We’re at the kitchen table in my childhood home in Sault Ste. Marie, Michigan. It would seem to be after noon, since Karl appears to be drinking booze, and there’s a glass of wine on the table.
Our art is on the wall, paneled with that cheap stuff that costs $80 per sheet nowadays, when you can find it. The magnifying glass, the toast tongs, the Stamtisch table sign (for German speakers), the German shepherd bookend with the timepieces around his neck (watchdog, get it?).
Clare and James are in sweaters and there are ornaments, so it must have been December. December, in my memory, is white as Lapland. No, wait. Wrong story.
You can’t tell in this photo, but James has a degenerative kidney disease called Alport syndrome, which eventually destroys the kidneys and causes hearing loss. James knew then, and as he moved into adulthood, started watching his kidneys. (Well, his doctors watched them.) He finished school, got married and divorced, became a successful morning radio DJ, led Key Clubs in the cities he worked in, and was an exceptional brother. He’s been quite philosophical about the whole thing.
Then, two or three years ago, he sent us an email saying the damage was progressing and at some point reasonably soon he’d need a kidney transplant. Earlier this year, he went on dialysis, and we started talking about a transplant.
As you probably know, family members are the best candidates for organ transplants, although being a perfect match is not a sure thing even for brothers and sisters. All the Rabe’s who could give a kidney volunteered to do so, with little drama.
We’re not, for the most part, very dramatic people. We’re pragmatic: James needs a kidney; we have an extra; so be it. Not that we didn’t think about it. My husband Julian immediately assumed I’d be the best candidate and was concerned. “What if something happens to you?!” I’ll be fine, I told him. I’d talked with two good friends who’d lost kidneys in one way or another and they assured me the process was routine, the recovery time was minimal, and the worst of the side effects was a little numbness. Besides, it made me proud to think that I’d be saving my brother’s life. I’d get to be a hero, but acted nonchalant.
James was also pragmatic, at least on the outside. He never took it for granted that he’d get a kidney from one of his siblings, or even from a stranger. He seemed to be living very well in the now, accepting the dialysis and moving ahead in his life. He's been using peritoneal dialysis, which can be done at home and overnight, a huge improvement over the traditional method of sitting for hours at the dialysis center a few times a week. I’d never heard of it. Now we’re all working the word “peritoneal” into conversations around the water cooler.
Now, the first thing you need to do, apparently, if you need a transplant, is to figure out where you’re going to have it done, because every center has its own rules and procedures, whether it’s Walter Reed, Cedars-Sinai, or Baylor. James lived and worked in Rochester MN for many years, so he picked a little out-of-the-way medical center there to have the procedure done. The Mayo Clinic.
My sister Joan lives in Rochester, and when she went to Mayo to get tested last month, she was a perfect match … physically, psychologically, and logistically. She’s comfortably retired from IBM, has a great (also retired) husband, and has a couple spare rooms in her house.
Of course, I was happy to hear the news. But I was secretly a little disappointed. Of course I want what’s best for James. But a little part of me wanted to be the hero. “Hmm,” I thought. “It’s not a huge deal, but I should probably address this feeling.”
I called up Joan the Donor and chatted with her about the procedure, her concerns, her husband’s concerns, the timeline, etc. And at the end of our conversation, I mentioned my Hero issue. “Oh, yeah,” she said. “I completely understand. I felt the same way.” Whew. It was nice to know. Plus, the donated kidney only lasts, on the outside, 20 years. So I’ll have another chance in 2032.
Like I said, we're very practical people, so why wait to have the transplant done?
We have a syndrome, a patient, a donor, and a transplant center. So, James’ kidney transplant is scheduled for Friday, and the Rabe family would consider your thoughts and prayers the best Christmas gift of all.