7 Horrific Realities of Receiving a Donor Organ
I was diagnosed with cystic fibrosis at age three, and for the most part, things were fine. Or at least as fine as they can be after being diagnosed with something -- one is very rarely "diagnosed" with sunshine and puppies. But in January 2014, my health decided to pull a Wile E. Coyote, and my lung function up and plummeted off a cliff. I was airlifted from New Mexico to California, hospitalized for three weeks, and officially listed for a double lung transplant. After over six months of waiting, I've learned that ...
Being on a Recipient List Completely Upends Your Life
Fans of geography might notice that New Mexico and California are not, in fact, the same state. Doesn't seem like lung failure is a great time to undertake that big move, does it? But lung transplants are hard. They're actually one of the trickiest, most specialized kinds of surgeries around, and only about 80 hospitals in the U.S. and Canada are licensed to perform them. And of those, just half do it with any kind of regularity.
Some only do it on leap years.
As a patient in Albuquerque, I was going to have to travel, and my CF clinic gave me three options: a children's hospital in Denver, a hospital in Phoenix (that had, at the time, performed exactly one double lung transplant), or Stanford mothafuckin' Hospital in California. It was the equivalent of asking whether I'd prefer to meet Aquaman, get a high-five from the Wonder Twins, or have Batman swoop in, save my ass from a fire, then take me out for a late-night breakfast-dinner of waffles just to make sure I was handling things OK, maybe walk me home, tuck me in, cuddle up beside me until I drifted slowly to sleep, his comforting, gauntleted arms holding me tighter and tighter ...
My point is that Stanford sounded much better.
"This one gasps whenever you mention Batman. He does need new lung!"
Still, I had to move my whole life to California. Because everything went down so quickly and unpredictably, my wife and I wound up relocating states with a single carry-on-sized bag to our name, and had to leave our puppy with her parents. I feel guilty constantly about dragging my wife into this (thanks for that, Catholicism). She, meanwhile, feels terrible because I feel terrible, plus she's doing all the chores, working remotely part-time, taking care of me, fundraising, and dealing with all the insurance/pharmacy/hospital bullshit, because that woman is an angel and, despite all my efforts to the contrary, she loves me and refuses to divorce me.
And then there's the pizza situation out here: green apples as a topping? Seriously? Go fuck yourselves.
Right with the core.
So my wife and I have been living in a tiny apartment in Silicon Valley since February, and all because we need to be within four hours of the hospital when we get The Call. A removed set of lungs is only healthy for about that long after they take it out of a donor. And since no one knows when they're going to decide to donate their lungs (that is, die), I have no idea when I'm going to be called in for transplant. I have to be ready and eager for medical evisceration at any time, every single moment of every single day. On a purely unrelated note, I've been a bit anxious lately.
That tiny four-hour window can also lead to "dry runs." Aside from getting the organs out of the donor and getting the recipient ready to squeeze 'em in, the donor has to be tested for basically everything. Immediately after transplant, you're on so many immunosuppressants that an errant sneeze could literally kill you dead. And checking for every sniffle and flesh-eating virus takes a while, so sometimes the recipient is already under anesthesia when it's discovered that the donor organs had a touch of cyber-ebola. Sometimes the recipient is in the middle of a $30,000 emergency air lift. They don't comp that flight if the donor turned out to be a Terminator and all they found in his chest were microchips. All the recipient gets is a shrug and a "forget it, Jake. It's Skynet."
"Would you rather we have caught this after the transplant?"
Your Life-Saving Organ Might Come From an Infected Donor
Ten percent of all donor organs are considered "high-risk" -- they come from donors "whose past history places them at a slightly increased risk for viral infections, such as HIV, or hepatitis B or C." This includes the old Charlie Sheen Holy Trinity: inmates, prostitutes, and hardcore drug users.
"High-risk, high-reward, baby!"
On top of that, an undisclosed number of donors are John and Jane Does -- homeless folks who show up in emergency rooms with no ID and then lapse into irreversible comas. If family can't be found, it's usually up to the medical examiner to make the call about donation at the time of death.
As a recipient, the CDC mandates that you're told about the high-risk organs, but that's it. Patient confidentiality counts, even if no one knows who the patient is. So unless you have a particularly chatty nurse, or a surgeon who feels it's necessary to your decision-making to know all the colorful details about your potential donor being found mostly dead in a gutter with an In-N-Out bag on his head and a needle in his arm, there's a good possibility that you're getting your lungs from a guy who lost a fight to a rat king.
But not the guy who fought the rat archduke. His lungs are shit.
Movies and TV Shows About Organ Donation Are Killing Real People
You know that episode of Scrubs where a single organ donor kills all of Dr. Cox's patients, or how Grey's Anatomy is apparently a parade of rich people stealing the insides of the poor? That's not how any of that works.
I'm pretty sure doctors do bone each other 24/7, though.
There's a national board that decides where organs go, and it's based on need, not comedic timing or smoldering good looks. But like I said before, it's all confidential. Dr. Cox would never know where those organs were going, specifically to avoid the breakdown he suffers at the end of the episode. Besides, you can't call dibs and carry a freshly-procured heart down the hallway. If you could, every hospital would be like an Operation-themed sequel to The Purge.
Here's how the process really goes: once some wonderful person magnanimously decides to be an organ donor, a non-profit organ procurement organization (OPO) is contacted to run a check against the national database and see who in the area is waiting for what organs. Their program ranks potential recipients by "objective criteria" (i.e. blood type, tissue type, size of the organ, medical urgency of the patient, time on the waiting list, and distance between donor and recipient). Then the OPO contacts the hospitals for the top-ranked recipients, gets the go-ahead, then contacts the donor hospital, procures the donated organs, and ferries them to area hospitals as needed. At no point is the surgeon, the patient, or the donor even informed during that check phase.
Finding and paying a donor through Craigslist: also not possible.
This isn't simply pop culture nitpicking: fictional TV shows that portray organ transplantation as something shady are discouraging very real people from checking the "organ donor" box on their driver's license. Which is costing other real people their lives. There are noticeable dry spells in organ donation that correspond with big news stories or TV shows portraying the practice negatively. Your faith in the overall intelligence of humanity just got a little bit slippery, didn't it?
It's Not If, But When Your Body Will Reject the Organ
Pretty much every recipient goes through organ rejection to some extent or another. For the longest time, I thought rejection was going to be dramatic and freaky like Alien, with my body exploding a pair of pristine new lungs out through my rib cage, but it turns out that rejection is actually slow and boring, like Prometheus.
Though I found the film's surgery poignant, for personal reasons.
It doesn't mean that the transplant failed or that there are issues with the new lung. Generally, it means that your white blood cells are either over-or-under-zealously reacting to someone else's meat being inside of you, and need to be shown the error of their ways. The symptoms come on like a cold or a flu. And while I don't know if "easy" is the right word, managing rejection certainly isn't impossible. It can be as simple as changing up some dosages or, if it keeps happening, outright getting a second (or third) transplant. Just piling new lungs up in there until you are more lung than man.
Oh wait, no -- they take the old ones out first. That makes sense.
"Be sure to get your card stamped. The fifth one's half-off."
Your Post-Op Life Will Never Go Back to Normal
I can't speak about post-transplant life with authority, as I'm still staring forlornly from the other side of that fence, but here's what I do know:
Your immune system is at its most suppressed and vulnerable in the first few weeks after the transplant, and hospitals are the Mos Eisley of horrible viruses and diseases, so you're sent home as soon as possible. Generally, it's around two weeks, but the record is four days. Afterwards, you make frequent trips to the hospital, though they get less and less frequent as time goes on.
You may get to move back to New Mexico. Someday.
However, you'll be on immunosuppressants forever. Your poor immunos get suppressed harder than those dancing kids in Footloose.
You have to stay within one hour of the hospital for the first three months, and when you finally are sent home, you're given limits on where you can go and what you can do. You have to wear a filter mask in public for the first six months, and you're supposed to stay away from big crowds (concerts, sports events) for a while after that. You can't drive or even sit in the front seat of a car for the first three months, because an airbag could basically implode your already fragile chest.
And absolutely no bagpipes for at least a year.
You can't lift anything heavier than a gallon of milk for a couple months. And you're supposed to get cleared for everything -- driving, working, sex, milk-lifting, contact hopscotch -- before you start doing it. You can't eat sushi ever again, because the risk of salmonella from uncooked foods is too high when you're on immunosuppressants. Oddly enough, you also can't go near turtles for the same reason. I know that doesn't sound like a big deal, but you'll find the turtle loss hurts the most.
The Pubic Hair Managers Are Absolute Professionals
I had a procedure scheduled for a Monday morning, but on Sunday I started coughing up a literal bucket of blood. I had to have an emergency pulmonary embolism in the middle of the night. I was put under, intubated, and then a wire was sent up through my femoral artery to science away the bleeding in my lungs. Given how bad my lungs already were, they told my wife that it was possible I'd be stuck on the breathing tube until they were able to perform the transplant, which could be a day or a week or a year into the future.
Longer, if the rat king is defeated.
Instead, I was totally fine. Everyone called it miraculous and came from far and wide to marvel at all the blood that wasn't coming out of me. You'd think this is where I started believing in angels or something, but all I kept focusing on was the fact that someone had shaved my pubes to get the incision site clear. On top of that, this mysterious blade-wielder had felt compelled to go above and beyond the task at hand and shave both sides so that I stayed symmetrical.
Picture it: I'm unconscious and sprawled naked on a table, blood everywhere, frantic screaming, more "stats" flying about than a fantasy football league, an entire surgical team on edge, waiting for the "all clear" so they can get in there and save a life, and the pube-wrangler is like, "Hold up, everybody. Gotta get the other side so he doesn't look weird."
He should have shaved his initials into me. He earned that right.
The Epilogue: Victory
UPDATE: On August 27, 2014, I successfully underwent a double lung transplantation, and am currently breathing like a motherfucking boss.
Watch out, oxygen. Eirik's back.
While I'm not exactly running marathons yet, I feel leaps and bounds better than I did before the surgery, and each day, things get better and better. I can also confirm that the seven months of angst and depression and fear and doubt that plagued me while writing this article vanished like a fart in a hurricane the day I was discharged from the hospital.
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For more insider perspectives, check out 5 Things You Didn't Know Surgeons Do With Your Body and 5 Terrifying Things I Learned as a Drug-Addicted Nurse.
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