A little background just to set the stage…
I got myself on the transplant waiting list right away after I started dialysis 3-plus years ago. In Canada, or at least in my province, no matter when you get evaluated, time on the waiting list starts on the day you started dialysis, even if it’s retroactive. This makes it absolutely fair for everybody, although in some ways, it does penalize those who get on the waiting list promptly vs those who don’t bother until later on.
Now being on the waiting list can be an emotional roller coaster at times, and at other times, you just quietly hope to hear the phone ring. Every time that phone does ring, you can’t help but think this may be the time. Of course, it never is - but it just takes that one time.
During the first year, one of my brothers offered to donate a kidney. It took about 7 months to complete all the tests and interviews. During that time, I was on hold from the waiting list - because that’s the policy here when a potential recipient already on the waiting list is having a potential live donor tested (on the evidence that the live donor kidney would be so much better than a cadaver one). My brother is a perfect match, but he ended up being rejected at the very end, after the very last interview, 7-8 months later, so I became active on the list again (without having lost any waiting time on it, though). I can never know for sure. I’m not a complete idiot, so given the circumstances, no matter what plausible medical excuse they give, you can guess what I suspect happened (not uncommon either, as I know other people this happened to).
A couple of months later, I’m driving along going to the hospital for a support group meeting at 8am when my cellphone rings. It was a nurse telling me to head for the hospital because they might have a kidney for me. I get there, and I’m told that I’m second in line, but that because the guy ahead of me has a lot of antibodies, there is a better than 80% chance I will get the kidney. So they admit me to a hospital room, and then I go for the pre-transplant testing (blood test, EKG, chest X-ray, etc.). Apparently, crossmatching takes a few hours to complete, and so, by now, at 1pm, I’m still in the running for that kidney. Roundabout 3am, the nurse assigned to me starts thinking that maybe she should prepare me for the IV line used to infuse the big dose of steroids (because the actual surgery would be sometime after 6pm). The neph tells her to hold off for a while. At 5pm, neph comes in and tells me I’m not getting a kidney that day. So I go home empty-handed after spending the entire day in that hospital room.
At that time, I’m thinking, “Well, I got called as a backup, so it probably won’t be long before I get called as the primary”. Now I know better. That was November 2003 and it’s as close as I’ve gotten. Now it’s February 2006, and I’ve never heard from them again. This just shows how much actually getting a kidney from the waiting list is like winning a lottery. There’s a lot more to it than seniority on a list!
While I’ve known at least a couple of people on dialysis who chose not to be on the waiting list (one of them fairly young too) because they preferred not to deal with all the issues involved (usually it’s the drugs, but also what they refer to as the mind games of being on the waiting list), there was never any question in my case, even though the kidney disease which got me on dialysis can recur in the transplanted kidney.
After I moved on to home hemodialysis last year, I spent some time mentally re-evaluating the transplant thing. Daily nocturnal hemo is so much better than conventional hemo that one begins to wonder if it wouldn’t be just as well to stay on it. In some ways, I actually have less diet now than some transplant recipients. I mean look, I’m off all BP meds for the first time in two decades! Now, I’ve already been told that with my recurrable kidney disease, the transplant nephs will want me on at least an ACE inhibitor if I ever do get a kidney. I even went so far as to discuss it with my home hemo neph. She does recommend staying on the transplant list, of course. It’s important to realize that, while daily hemo improves lifestyle, there is still no good trial evidence that it reduces overall mortality.
In the end, this is how I see it…
Daily nocturnal hemo approaches the quality of life a transplant gives you, other than for the time needed to do the treatment almost every day. This is good, for now, while I can still do it. But things can happen, you know. A transplant is another treatment. I’m a person with ESRD, so, I will have times on dialysis, probably some time with a transplant, and maybe a return to dialysis at some point. I’m 52, and I might not always be healthy enough for a transplant in the future, as time goes by living as a person with high risk of developing cardiovascular disease. On hemodialysis, you can live a long time, but, you do run the risk of gradually running out of accesses, not to mention other potential problems. So, whatever time a kidney transplant gives me is time I will happily take as part of my inventory of available treatments.
I think everyone is at least a little afraid of the drugs. Sure, there are side effects, and potential risks (like increased risk of some cancers). But hey, we’re not exactly drug-free as dialysis patients either, what with heparin, epo, calcitriol (or similar), venofer, etc.
Personally, I have no pie in the sky illusions about transplants. I know things are not always rosy, having spent some time hospitalized a year ago on the same floor as transplant recipients being treated for infections and what not, and having known a number of transplant recipients on an ongoing basis. It’s just another treatment, but it’s one that on the whole would be beneficial for me. If my kidney disease recurs, so be it. This possibility is why after the experience with my brother, I decided to not accept any other potential live donor even if offered. I would rather be on dialysis and wait for a kidney on the waiting list. I’ve had the talks with the social workers, but, there’s no way I want to deal with the possibility of recurring disease having accepted someone else’s great gift of a live donor transplant.
Beachy, I can’t tell you what to do, of course, but getting the evaluation completed takes some time. I’m inclined to say you may as well get it done. For one thing, as part of the evaluation, you will have the chance to discuss the issues with the transplant neph and/or nurse, and probably the transplant social worker as well. There’s no law that says you have to accept a kidney later on if you don’t want to.
If there are still doubts, here’s more… every time you have to setup that washing machine, think what it would be like if you didn’t have to do that. No more worrying every time if the needles will go in easily that night, if the night will be plagues with alarms, etc. I know I will gratefully take whatever time I can get with a transplant.