Beyond the Kidney Transplant

snarky ecardI want to take a moment to talk about the things that can happen beyond dialysis and a kidney transplant.

For a lot of people (I would say most), kidney transplants go pretty smoothly. They get their new kidney and suddenly they just feel better. They have all this energy, there are no longer any dietary restrictions, they can drink as much water as they like (when you’re on dialysis you’re limited on how much water you can drink because your body isn’t getting rid of the excess fluid like it normally would, and this is bad for the heart). Your color gets better.

You have a new lease on life–a fucking gift–and you vow to never take that for granted.

Sure, you have to take a bunch of pills now to keep the kidney, but that’s a small price to pay (okay, so the anti-rejection meds are actually pretty expensive, so it can be a big price to pay for some) for being, y’know, ALIVE.

And then there are cases like my husband’s. At first everything went great. His color was amazing (and still is, honestly) and he suddenly had an appetite again. He started to gain a little weight (which was a good thing considering how much he’d lost prior to dialysis from being sick all the time). He had all this energy he didn’t know what to do with.

Until the complications began.

Well, to be fair, we had our very first complication the night he got the kidney–it wasn’t producing urine so they opened him back up and did a biopsy just to make sure everything was okay. Ends up they think he was retaining just enough fluid that it was compressing the artery and keeping the urine from coming out. Once they opened him up that thing started working like a champ.

It wasn’t until we got to clinic that things started going wrong. First, it was a fluid pocket that they drained. And then another fluid pocket that they drained. Then the fluid pocket came back, so they did a CT scan and found that the muscle layer wasn’t healing and allowing fluid to collect in a tunnel, so they put in a wound vac. The wound vac actually went pretty well, and it healed up faster than what the wound care doctor had thought it would.

Finally, after two months of being in Dallas we could go home!

Everything was great for a while, until they lowered one of his anti-rejection meds to get him on his maintenance dose. Within a couple of weeks his creatinine had gone up a bit, and he was getting a biopsy that ended up being a super mild rejection episode.

A month later, the same thing happened. Treated again for rejection.

Except now the doctors think it wasn’t rejection, but rather something called the BK Virus. Here’s the crazy thing about this virus: something like 80% of people have it dormant in their bodies (basically, we’ve built an immunity to it naturally), but when you’re immunosuppressed it can get activated. AND IT ONLY ATTACKS TRANSPLANTED KIDNEYS. Heart transplant? No problem. Lung or liver transplant? You totally don’t have to worry about the BK Virus. Kidney transplant? You better check those numbers often, otherwise you could be screwed and lose that kidney.

To be honest, I’m sitting beside my husband right now as he gets a dose of drugs to help kill the virus. The kicker? This same drug can cause blindness (except he’s already blind, so no worries there), and if it’s given in too high of a dose too fast it can kill the kidneys.

FANTASTIC.

It’s scary. It’s overwhelming. It’s frustrating and stressful, and God knows I’ve been a mental and emotional basket case over the past year (I do have to say, though, that the meds I started a few weeks ago seem to be keeping me fairly level right now, which is a good thing).

All that being said, though, we have a lot of hope. The hospital we chose has a high success rate in keeping transplanted kidneys (one of the highest in the nation), and even though this virus is a bitch it CAN be beaten. The fact that his kidney came from a living related donor definitely puts the odds in our favor, too.