UNOS "Points" and Revised Waiting Time

This morning I got a phone call from Baylor All Saints in Ft. Worth. The pretransplant coordinator told me that UNOS (United Network for Organ Sharing, the umbrella organizations that regulates organ transplants in the US) has given me enough "points" as a prior kidney donor to expect a transplant within the next 6 months or maybe less. Their waiting time is usually 18-24 months, so this is a significant reduction in my wait time. She also told me that Baylor in Dallas will be calling me to tell me what my expected wait time will be for Dallas; although they are sister hospitals, their waiting times differ because they draw on different pools (geographic area) of donors.

Last week, after my conversation with UAMS about getting on the "active" list, I got in touch with my nephrologist. He agreed that it was time, and will be writing a letter to UAMS to that effect. I emailed Fadelle Powell (UAMS Pretransplant Coordinator) to tell her to move me to the active list. Fadelle said last week that once I'm active I could get transplanted very quickly, perhaps as soon as 3 months. So, it looks as if things are moving very quickly. At one point, we were told that most transplants happen around major holidays, because that's when there are more fatal accidents/domestic violence that results in the availability of organs suitable for donation. That being the case, in light of what I've been told about my wait time, I'm thinking it could happen as soon as Memorial Day (end of May) or possibly around the 4th of July.


I've started the process of being evaluated for transplant at Barnes hospital (Medical School for Washington University in St. Louis); my initial interview with them is scheduled for Monday, June 4. I had previously planned on attending a "reunion" of the API Production Waste Exemption Committee in Houston on June 4, but I will have to miss that meeting. It's too bad, because I was really looking forward to seeing Connie Ericson there. She offered to be tested as a donor, although it didn't work out.

I will go to the lab tomorrow, May 1, for a blood draw to send to UAMS. I will have to do blood draws (one for UAMS and one for Baylor) (and one for Barnes if I get listed there)) once a month until I get a transplant. They use the sample for tissue typing, and the blood has to be less than a month old. The blood draws are 7 vials for each hospital, and they have to be Fed Exd for next day delivery. I will have to stagger the blood draws so that I don't do more than one per week. Not sure I could stand to have 21 vials (7 per hospital) drawn at the same time.
I went to Phoenix this past weekend to meet up with Janet McKinnon at the Firesky Resort. She is contemplating divorcing her husband Peter, and needed a shoulder to cry on. I flew out of Tulsa through Houston, and I flew back into Tulsa through DFW. As I deplaned in Tulsa on the way back, my bag caught on the jetbridge and I fell on my left side. I was so sore last night, although I don't have large bruises. Since I didn't break anything, I refer to the fall as a "bone density test for dummies."

Changing my UAMS listing

When I was first listed at UAMS, I agreed to go on the inactive list so long as I had some residual kidney function of my own. The idea was to maximize the use of my own kidney before I got a transplant, but hopefully before I needed dialysis. I had a call today from the the UAMS pretransplant coordinator. She called to say that she had gotten a call from the coordinator at Barnes (St. Louis), and that had jogged her memory about whether I was ready/interested in getting actively listed. We talked about my changed symptoms--low energy level, occasional nausea, bad taste in my mouth that's almost constant, inability to eat much protein--and she said that she thinks I need to go active now. Of course she kept telling me that she could make no promises about how quickly I could get a transplant, but she said that she thought it would be very soon, like maybe around 3 months, and certainly less than 6 months. She said that our goal needed to be to go on the active list before I need dialysis, and that way I may be able to skip dialysis altogether. One of the things she told me is that even though I am in a "holding pattern," (not needing dialysis), that if I get a cold or the flu, the stress on my body will throw me over the line and I'll need to start dialysis. Then the transplant would have to be put off until I could regain my strength and get the dialysis to straighten out my body chemistry. So...I think I'm ready to get actively listed, and get my bag packed. I went by the doctor's office today and left a note for him, saying that I want to go on the active list. That decision is mine to make, and does not require permission or anything else from him, but I don't want him to be blindsided.

The stars must be aligned properly, because today I also had a phone call from Baylor in Ft. Worth. The coordinator there told me that she was writing to UNOS (United Network for Organ Sharing), to find out how much credit I'm entitled to as a prior donor. The credits are used to move people up on the waiting list. She said that she had never had a patient that was a prior donor, and did not know exactly what UNOS would say, but she did say that it would improve my ranking on the list.

Of course, transplants are not without risk. The immunosuppressive drugs are powerful and have serious side effects. But being on dialysis is pretty awful too, and there are lots of side effects from it, especially if you are on it along time. And staying in my present condition is not an option because my function will eventually disappear. I'm thinking that I've had another slip downward because when I got my ProCrit (blood hormone) shot last month, they had to increase my dose because my blood count was down, another sign of decreased kidney activity. Of course I want to be well and feel strong again, and a transplant is the way to get there, although the road to recovery (as with any surgery) is not without some pitfalls.  I'm planning to call UAMS on Monday, after I get back from my weekend with Janet. Hopefully by then I will have heard back from the nephrologist. The UAMS coordinator said that activating my listing will take 15 minutes, so essentially when I call her, it'll be done.

Yesterday I got a call from Heather Garcia, pretransplant coordinator at Barnes, setting up my pre-transplant interview with them on June 4. So I'll be starting that process soon.