Jeff's Journal

My First Holiday Weekend on "The List"

I was listed on the national transplant list on June 3, 2005 after the transplant attempt with Donor #1 failed. It has been a month and so far, no calls. There are about 62,000 people waiting for kidneys. There are probably 61,998 people ahead of me on the list. There are about 15,000 transplants a year, so you do the math and figure my wait time on the list if the current potential donors don’t work out. I’ll have to wait a while.

You get realistic advice when you are in this predicament. The Transplant Coordinator advised that if you are waiting on the transplant list, you really should not travel on holiday weekends. Especially, you should not travel out of Houston on a holiday weekend. Of course, I initially went to the thought of how big a hassle it would be to arrange dialysis in another clinic, but she explained what she really meant.

Dealing in tissue is an unusual economy. The UNOS (United Network for Organ Sharing – I’ve thought the word sharing to be an interesting term.) people control the waiting list. I’m cataloged waiting for the right match to supply my need. Once on the list, you wait for a call. When the call comes, someone’s brain activity has gone to nil, the family agrees to donate (I’ll save another rant for presumed consent.), the cutters show up, the coordinators and UNOS folks do their magic and calculations to find the right possible matches and the cutters wait to harvest the tissue.

Holiday weekends are important to people waiting on the list because holidays seem to bring out the fools. Fools drive fast, fools drive drunk, fools drive without their seatbelts, fools attempt to out run trains at rail road crossings, fools exchange heated words and then let bullets fly in the heat of the moment. Holiday weekends breed such situations. And these situations provide accelerated opportunity for those waiting on the list. Fortunately, UNOS helps to redeem the folly of fools and allows the waiting to be orderly and with some dignity.

My friends who are on the other side of the transplant experience give me better information. They tell stories of the real scoop. As you get close to the top of the list, you are assigned a pager. When the pager goes off, you gather your packed bag and head to the hospital and feel the anxiety rise. When you get to the hospital you wind up in a laboratory waiting room with other anxious ESRD patients. Blood is drawn from those in the waiting room so the best match is made with the deceased. Two winners of this blood lottery are whisked off to surgery. The non-matched return home to try and get some sleep and then in the morning read the obituaries and speculate who got whose organs.

You think there would be some resentment that you were called in and not selected. Several people tell me they made several trips to the hospital late at night for a potential transplant without results because others were better matches. Remarkably, there is no resentment. The ESRD fraternity has a tough ritual of initiation that creates a strong bond. When one in the fraternity is helped, it helps the rest of the fraternity. And the common desire is to get the best match possible. Although transplantation has its own ritual, returning to the dialysis ritual when a transplant fails takes an arduous toll. Plus, we realize the economy. In this scenario, someone dies; a family waits in another waiting room with feelings of grief. In the midst of their grief, they want to defray their loss. Knowing someone else will have a chance at life is a balm that sooths death’s sting. And at the close of one life, you want that chance at life for another to last as long as possible.

This is my first holiday weekend on “the list.” I doubt I’ll get a call, but it is likely I’ll move up on the list. Some family’s loss will be another family’s gain. At the moment, that is how the game is played. (I’ll save my stem cell rant for another time.) I’ve never been one to cut in line, but Donor #1 is making a long driving trip this weekend and he came through with some macabre humor. Before he departed on his trip, he called to let me know he has made a designation in his wallet. It states he is a donor (and has talked with his family) and he wants his left kidney designated to me. (Now that’s friendship.) If there is no call this weekend, Labor Day looms.

posted by Jeff Waldo @ 8:51 AM