When I was 20 years old, I was diagnosed with polycystic kidney disease (PKD), a rare genetic disorder that, over the next decade, took my healthy, petite 4-ounce kidneys and turned them into diseased 10-pound monstrosities, like the Thinner curse in reverse.
And the goal of the curse was to stop you from peeing.
So, at the age of 30, I underwent surgery to replace my kidneys with one that my mom had donated. And if that sounds like a pretty straightforward operation, well ...
You might have heard that the U.S. has a major organ shortage; there simply aren't enough healthy organs for all the people who need new lungs, livers, hearts, brains, courage, etc. But as bad as it is to need a heart, things are far worse if you need a new kidney. Of the 122,000 people currently on the organ donor list in the U.S., 100,000 are awaiting a kidney -- that's 82 percent. This is because the disorders that damage other organs to the point of needing a transplant are relatively rare, whereas diseases that obliterate your kidneys are depressingly common. About 67 million Americans have high blood pressure, and nearly 20 million have diabetes -- together, these two conditions cause 70 percent of all chronic kidney disease cases, which is arguably the worst tag team in history outside of the time the Joker teamed up with the Taliban.
Luckily, since you only need one kidney to live, you have the option of using a live donor for your new pee filter. Unluckily, many of the diseases that damage your kidneys are genetic, which tends to eliminate family members, who are the most likely to be genetically compatible. Friends can donate as well, but they're usually not the preferred choice (more on that in a minute). Amazingly, there are some people who choose to donate one of their kidneys to a complete stranger for no other reason than just because (some states even offer a tax deduction for donating an organ).
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"We're really doing you a favor. After all, we don't tax your organs ... wait. PEGGY! CALL CONGRESS!"
Kidneys are in such short supply that some hospitals have set up kidney chains, which are entirely different from the Vincent Price jump rope their name suggests. For example, Alice wants to donate to Bob, but is only compatible with Charlie. If Dave wants to donate to Charlie, but is only compatible with Bob, the four of them can form their own little organ key party and swap kidneys. Chains with as many as 60 people have been kidney-centipeded together, just so we can all keep peeing like God intended.
"Are you there, God? It's me, Margaret. Uh, slightly bigger plumbing issue this time ..."
I was fortunate enough to have a compatible donor in my mom (although five friends also offered me one of their kidneys). My mom didn't have kidney disease and matched me on a genetic level usually reserved for twins, so she was the one we decided to go with. Problem solved, right? Nope! Here's the thing ...
Whether it's because having people waking up in a bathtub full of bagged ice is bad for Vegas tourism or because there's huge potential for abuse in organ donation in general, there are a lot of hoops to jump through if you want to donate or receive a kidney. Even for my mother to donate one of her kidneys to me, her daughter, which you would think would be just behind "magically sprout a third one" on the list of "totally legitimate ways to get a new kidney," we still had to go through a pretty extensive screening process.
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"You have 30 seconds. Go."
You see, the problem with getting a kidney from a living person is that said person might change their mind later. Not that they're going to immediately come sneaking through your window with a knife and an ice cream scooper, but they may very well make your life a living hell. I've heard horror stories about donors demanding their kidney back, and in some cases, the recipient had to get a restraining order.
So if you find a compatible live donor, you and the donor have to go through a psychological evaluation. Some of the questions I got were pretty straightforward and obvious, like making sure I wasn't having thoughts of suicide and making me swear a pinky oath that I would take super good care of my new kidney (after all, they don't want to waste a perfectly good kidney on some asshole). Other questions were more about my relationship with my mom -- did we get along, would we maintain a good relationship after the surgery, how would my mom feel if I didn't follow through with all the lifestyle changes required for my new kidney (she said she would be pissed, but probably wouldn't try to cut the kidney out of me), etc.
"Almost certainly not. Like 70-30."
And now you can probably see why they prefer to do this with family members over friends. Friendships can come and go, but you're generally stuck with your family, whether you like it or not. Of the five friends who offered to donate their kidney to me, I'm still in contact with two of them -- people drift apart. It might be different if I were holding on to one of their kidneys like a cat they couldn't take with them to college or something, but statistically speaking, it isn't. And the potential for bad feelings down the line is huge.
What if they transplant the kidney and it immediately fails, effectively wasting one of their perfectly good organs? Or what if, 10 years down the road, they need a kidney? Up to 10 percent of living kidney donors regret giving up their kidney for a variety of reasons, and if you're the recipient, what can you ever do to make up for it? That's like an IOU they can hold over your head forever.
"Oh, you don't have money to pay for lunch? That's strange, you had plenty of money
to pay for surgery when you TOOK MY KIDNEY."
If you're one of the many people who aren't able to find a donor right away, you have to go on dialysis, which is a fancy word for a robot that cleans your blood.
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"That's right, human. Trust me. Trust me with your precious blood."
You see, when your kidney function falls below a certain point, they aren't able to clean your blood effectively anymore, which means in order to continue living, you have to go to a hospital or dialysis center three times a week and sit connected to a dialysis machine for three or four hours. The machine pumps your blood out through a tube in your arm called an AV fistula, gives it a good spit shine, and then sends the clean blood back to your body. Sounds simple, right?
Well, the machine replaces only a small fraction of healthy kidney function, just enough to keep you from turning into a giant pee water balloon -- you still feel like shit most of the time, as one would expect from perpetually living on the edge of death. And as advanced as the machines are, they're still nowhere as good as a real kidney. Up to 50 percent of dialysis patients suffer from muscle wasting as a side effect. When you eat a lot of protein, your body can't store the extra protein as fat the way it can with carbohydrates, so it's up to your kidneys to filter out the superfluous protein. A dialysis machine has to do the same thing, only it filters out all the protein in your blood, not just excess stuff. Without any protein in your blood (coupled with the fact that dialysis patients have to maintain low-protein diets), your muscles are unable to repair themselves and begin to slowly waste away.
"Yessss, human, make yourself weaker for us."
And that's just one of the problems. You lose a little bit of blood to the machine, so you feel tired and lethargic from anemia. You have to maintain a very strict diet with low fluid intake, making you dehydrated all the time. A lot of people experience constant nausea and vomiting, among other symptoms. It's a bit like being hung-over all the time, only without the fun of being drunk, and this is what you have to do until you either get a new kidney or die. And because dialysis requires you to spend so much time getting your treatment (the facilities tend to work 9-to-5 hours, just like everyone else), most patients end up having to quit their jobs, which forces them onto Medicare or Medicaid (6 percent of Medicare's entire budget is spent just on dialysis).
A dialysis nurse told a story about how a patient receiving treatment fell asleep beneath a blanket (which is very common, because the treatment makes you feel sleepy and cold), when her vital signs suddenly started tanking. When they pulled the blanket off of her, they saw that the bed was literally covered in blood -- the woman had moved her arm in her sleep and accidentally dislodged the needle from her fistula, so the machine had been steadily pumping her blood straight out of her body. The dialysis machine circulates all of your blood every 15 minutes, so it can bleed you dry very quickly. And this isn't an isolated case -- venous needle dislodgment is a relatively common problem (common enough to have a fancier name than "tube slipping out of your arm-itis"). While they caught it in time to save this woman, not everyone has been so fortunate.
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"Nurse, she's bleeding out! Quick, move her before she permanently stains the sheets!"
Because my mom was a close match and seemed unlikely to try to repossess my kidney at any point in the future, I didn't have to go on dialysis. Which is lucky, because no one wants to be indefinitely hooked up to a mechanical vampire.