14 January 2010

Revolution and Freedom

[Evidently some of you have been curious about the results of my one year post-transplant checkup. Your curiosity is heartening! So here we go.]

I often like to start these posts with a bit of history in case I've got new readers, a useful fantasy that keeps me writing. In brief: umpteen billion revolutions of the Earth ago matter and energy were arranged into a Universe; forty-two-or-so revolutions ago some bits of said matter and energy were rearranged into Me; and twenty years ago bits of Me (namely my Kidneys) decided this arrangement wasn't for them and staged their own revolution. My new arrangement is that I've spent a couple years on dialysis, and through the altruistic goodness of others I've received two kidney transplants. Don't worry, it actually hasn't interfered with my life as much as you'd think, though it does make for interesting conversation.

Last December my college friend Shark and I arose underwent twin operations; a surgeon removed a kidney from him and another surgeon installed it into me. Read the rest of this blog if you want to know what's happened between then and now. Anyway, Monday was my approximately one year checkup; now you're up to speed.

The one year checkup is a milestone in kidney transplant success. If your kidney is working fine after a year with no hiccups, then it will probably work for decades. See: six months after my first transplant, I had a "major rejection episode" that required a hospital stay and heavy-duty immune system killers, and the kidney still lasted 17 years.

The lifetime of a second transplant is strongly predicted by that of the first. If the first one lasts a decade, the second one probably will work at least that. When they were preparing us for this recent transplant, my surgeons told us that this would probably be my last transplant as I've known them. What they meant is that either this transplant will last the rest of my natural life; and if not, by the time I need another one they won't be doing kidney transplants this way any more. Over the next decade or so they expect that technologies like growing kidneys to order from scratch, or kidneys from pigs that are tailor-made for humans, or the like will be commonplace and replace the need for human donation. Prometheus' revolutionary gift keeps burning today, no?

Now, there's a great big hulking caveat looming significantly behind all this. The above only applies if you take care of yourself. Most of the taking care of yourself if stuff we all should be doing anyway: watching our salt and cholesterol, eating a balanced diet, exercise, et cetera. You're all doing that, right? Right. But of course there's more to it than that. You have to take your megadoses of medicine mutliple times a day: currently I'm taking about a dozen medicines scheduled into four time slots every day. The meds have unpleasant and even deadly side effects. I monitor my weight and blood pressure and temperature because any bad moves there can be an indication of problems. Maybe some of you have read the Chronicles of Thomas Covenant. and recall the warning of his doctors: "Self-neglect might have killed him." On the more likely bet that you've read Harry Potter, then I'll use Mad-eye Moody's words: "Constant vigilance!" Yeah, I know, it's not like I have leprosy or Lord Voldemort on my tail, but facts are facts: at least 10 percent of kidney transplant patients fail to take their medicine and, and non-compliance is a sadly important area of research.

It's hard, so I've made it automatic. I just do it. It's what I do like breathing, eating, and going to the bathroom. I take my medicine every day. I eat right and I avoid the demon rum. I exercise. When it's tough, I consider the alternatives. One alternative is dialysis, or as I affectionately like to call that, living hell. The other alternative to living with kidney failure, though, is Not Living. Actual Hell. I'm not sure what being dead is like but I'd rather not find out; I like living a lot even when it's tough. There's cool stuff in the world, and some people that I like.

From December to July I returned to the transplant clinic every week to get blood drawn, took my BP 4 times a day and was on fairly high doses of meds. In July it looked like everything was going well so they said I only had to return to the clinic once every two weeks and they lowered my meds some. But the one year point is what my surgeon calls "graduation".

I'm glad to say I graduated with distinction.

At one year, my blood work is that of a normal, healthy 42-year old male. Maybe my cholesterol's a little high. The kidney is doing its job perfectly (creatinine of 1.0 for you kidney geeks). There are no signs of rejection and my bone marrow is working like it should. The point of maximum risk has passed and I'm doing great; better than the first kidney, actually. Living donors are always better.

From now until forever, I'll get my blood drawn just once a month and see a nephrologist every six months...status quo like I had been doing for 20 years already. I no longer need to visit my transplant surgeons since by now it's obvious that everything's been hooked up right and the organ's not going anywhere. "Everything's still in place," as he put it.

I had become very sick in the year leading up to this last transplant, and as I now realize, I'd been becoming sick for many years. My last kidney didn't work at 100% after that rejection episode, and I went for a good decade with about 25% normal kidney function. It did damage to my body: my muscles, my joints, my endocrine glands, even my skin. My body is now undergoing a major rebuild, its own sort of revolution if you will. My muscle mass is increasing -- think "return to normal", though, not "Lou Ferrigno" -- although, yeah, one of the meds I'm on is testosterone, to counteract the effects of all the steroids. My joints were once riddled with gout and now that's pretty much gone. It's nice to have all this stuff working again so I can get on with my business of life and many more revolutions around the Sun.

I see upon reflection that I've shared a lot today, and some of it's disturbing or at least not-fun stuff. I'm not bringing these things up to gain sympathy, which I need only a little of. See, things can get tough. In my life it's kidneys. In other people's lives it's earthquakes, or abuse, or mental illness, or what have you. We could all pretty easily feel sorry for ourselves, couldn't we? It seems like it might be much easier just to let someone else worry about taking care of things, no? Our lives always have a built-in excuse for why we couldn't do this, couldn't do that, because it's not our fault these things happen to us, right?

I learned at the age of 22 that the alternative to a life of suffering isn't freedom from suffering. It's freedom from life, which is no freedom at all.

All right, folks, thanks for reading. The checkup went ok.