This summer, my husband and I celebrated his second kidney
day. He received his kidney transplant
in June 2012. It’s definitely something
worth celebrating-- two years of health and an exponentially improved quality
of life. We owe this to a good family
who was able to think of others in their time of grief.
In that time, we have discovered that most people seem to
think getting an organ transplant means the end of all medical-related
woes—they seem surprised that Patrick even has to take medication. People that didn’t know him before he got his
transplant are shocked to hear that anything was ever wrong with him.
A few weeks ago, at Patrick’s job, this conversation
happened:
Coworker 1: Hey, Patrick, why do
you wear that stupid hat?
Coworker 2: Oh, dude. Don’t ask him that. The answer’s going to make you feel like a
fucking asshole.
Coworker 1: No, seriously,
bro. What’s with the hat?
Coworker 2: Fine. You’re
a fucking asshole.
The reason for the stupid hat is that transplant patients
are at risk for skin cancer due to immunosuppressant drugs. Depending on the type of cancer, transplant
patients have up to a 100-fold higher risk for developing skin cancer compared
to the general population. Patrick has
been encouraged to see a dermatologist at least once a year. When he goes out, he has also been advised to
wear sunscreen.
Mostly, Patrick just tries to stay out of the sun
altogether, which is tough for him. He’s
always been a sun-worshipper. He loves
swimming and hiking and all that outdoor shit.
Me, I’ve always been white—I don’t quite combust when light touches
me. I’m more like a deep-sea
creature. If you try to get me in the
sun, I’ll probably just squirt ink at you and retreat to my shadowy depths. That’s a writer joke. Geddit?
I squirt my ink all over you.
So I can’t really appreciate what he’s going through. When we know catching some rays is
unavoidable, we make sure he puts on sunblock.
But any sunscreen that’s worth a damn is just unpleasant. It’s greasy, it gets in your eyes, it gets in
your beard, (Patrick’s beard, that is.
Not mine. I don’t have a beard),
and it stains the hell out of men’s undershirts.
The rest of the time, he keeps himself covered-- jeans,
long-sleeve shirts and a hat. We
considered a classy parasol, but we felt that that would necessitate an
extensive wardrobe overhaul and that just ain’t in our budget. I mean, otherwise, c’mon. It’s a fucking parasol.
Manly as fuck.
So we opted for a hat.
This is the Midwest. Wearing a
broad-brimmed hat is so normal here, that if people see you wearing one, they
just assume you’re going to go back to your pickup truck and drive somewhere to
have rugged sexytimes with Jake Gyllenhaal or whatever it is cowboys do.
So all this has inspired me to compile a short(ish) list of
some basic things people don’t seem to know about kidney transplants. (Bearing in mind, of course, that I am not a
doctor. This is entirely based on our
experience.)
1. Kidneys: limit one per customer.
People ask us all the time if Patrick got two transplanted
kidneys. No. You get one.
Uno. Un.
Eins. That way, another
patient suffering on dialysis can get a transplant, too. Spread the wealth, y’know?
Fifty percent kidney functionality is all one needs to lead
a mostly normal, healthy life. This is
why live kidney donors are able to go through with it—they still get to keep
one of theirs.
Also, people ask us what happened to Patrick’s dead
kidneys. (We like to think of them as
“zombie kidneys.”) They’re still in
Patrick’s body. They do not get
removed. We’ve had people who seemed
almost disappointed to learn this, that we don’t get to keep them in a jar as
some kind of gruesome conversation piece.
(Though, to be fair, if they did take them out, we would keep them. In a jar.
Either on the coffee table or on a bookshelf. So they would
be a gruesome conversation piece. . . Our friends know us really well.) The kidneys, even zombie kidneys, are
attached to a freakin’ lot of blood vessels.
It’s an unnecessary risk to remove them.
The new kidney is placed in the front of the body, near the
appendix. So, right now, Patrick actually has
three kidneys in his body.
2. Getting an organ donation frequently means that somebody
died.
This is a tough fact to face. Sometimes, people are fortunate enough to get
a live donor. Kidney donation matches
are largely determined by blood type, which means that sometimes, kidney
patients can find a donor in his/her family.
A lucky few get an organ donation from a total stranger—just somebody
who felt like banking that much good karma, I guess.
But generally speaking, you probably got your organ from a
dead donor. You are alive today because
someone died. There are few truths as
stark as that one.
Due to medical privacy laws, not everyone gets to find out
who their donor was. We were fortunate
to receive a letter from our donor’s family.
I blogged about it here.
While we were awaiting a transplant, we found that medical
professionals can get pretty ghoulish about the donation process. We were on the waiting list for almost three
years. Every time winter weather came
around, invariably, at least one nurse would holler, “IT’S CAR ACCIDENT
SEASON!” Like, it’s black ice time, WOO! All we have to do is kick back and wait for
all those plump, juicy, non-pulverized organs to just roll in! New Year’s is a peak time, as is prom season
and graduation. Anytime there are a lot
of drunk drivers on the road, the death rates go up. And when death rates go up, it means that
people are about to get those desperately-needed hearts, livers, lungs,
kidneys, eyeballs. You name it.
The math is pretty simple.
Every day, 18 people die waiting for an organ donation. The average organ donor can help as many as
50.
If you don’t have organ donor checked on your driver’s
license, do it now.
3. It’s a treatment. Not a cure.
To be clear: receiving a kidney transplant is not a
cure. It’s considered an on-going
treatment. Patrick has an auto-immune
disorder that caused his kidneys to fail.
The immunosuppressant drugs he takes should
stop his rabid immune system from attacking the new kidney.
But no matter what medications he takes, a donated kidney has
a finite lifespan. It could last for as
long as twenty years, or as little as seven.
There’s no way to know.
4. Drugs.
I mentioned that people seem surprised that Patrick even
needs to take drugs? Well, he does. Like, a boatload-- antirejection drugs,
mostly, which he will have to take for as long as the kidney holds out, which
means that he still carries around one of these bad boys:
In case you couldn’t tell by that parasol remark, we’re all
about the accessories.
The medication has to be taken regularly. The antirejection medication has to be taken
twice a day at a very precise time. If it
is not taken on time, his body may begin the process of rejecting his
transplanted kidney. If he is even 15
minutes late taking his medication, the body can begin the rejection process.
Also, a lot of the drugs he takes are hard on his one
functioning kidney. So that 7-20 year
life expectancy for the donated kidney I mentioned? Might be cut short because it requires so
many strong drugs to keep his body functioning in the first place.
So . . . you know when you watch zombie movies, and the
survivors all scramble around, trying to stockpile water and weapons and stuff,
and you wonder what you would grab first?
I already know the answer to that question. In case of a zombie apocalypse, I’d be
raiding every drugstore I could find for every single capsule of
immunosuppressants. Without them, we’d
be going the way of the walking dead sooner than we’d like.
5. Doctor, Doctor, Mister M.D.
For the first year after Patrick got his transplant, it was
doctors, doctors, all the time. The
nephrologist, the kidney transplant team, the dermatologist. Now, he still has to see them all at least
once a year, and get monthly blood tests to make sure all of his levels are all
right—creatinine, cholesterol, red blood cells, all sorts of things that give
the doctors a picture of his kidney health,
as well as his overall health.
6. Forget about life insurance.
Expensive, completely indispensable-to-survival drugs? Check.
Routine medical tests and doctor visits, including specialists? Check.
Shortened lifespan? Check. We’re an insurance company’s worst nightmare.
Oh, what’s that? Does Patrick have a life insurance plan?
HAHAHAHAHAHAHAHA!
Ha.
No.
I don’t want to make this political or anything, but . . .
7. Take that steak well-done.
In a cowtown like KC, requesting your steak a well-done is
like sacrilege. Why would you cook all
the delicious flavor out?
Because transplant patients can’t have foods that may
contain bacteria. That rules out a lot
of yummy but undercooked/uncooked things, like sushi, or vegetables that can harbor bacteria, such as bean sprouts. It also means no organ meats. (Patrick was a fan of menudo before.) Bacterial infections
could wreck that kidney we had to wait three years for. Starfruit and grapefruit are also off the menu, as they can be fatal to kidney patients. That's right, I said fatal.
But giving up these food items is a small price to pay when you consider that during his
dialysis years he never had any appetite at all. His weight used to hover around 125 or
so. Now he’s able to enjoy eating again and back to a healthy weight.
No one wants 'citrus' listed as their cause of death. No one.
Also, kidney patients, like pregnant women, are advised to stay away from litter boxes, which carry the risk of toxoplasmosis. In other words, he has a lifetime exemption from cleaning the
litter box. So there’s that.
And now, your requisite adorable kitty photo.