End-Stage Renal Delay
J. G. C. Wise
I’d like to say that I got tested as a potential kidney donor purely out of the goodness of my heart, but that wouldn’t be entirely accurate. When my friend Stephen needed a kidney transplant, they announced his circumstances at church along with his blood type, O-negative. My blood type is O-positive, which I knew was incompatible for blood transfusions. Now if I’d quietly left off there like a moral and humble human being, that would have been the end of it. Instead, I felt the need to relieve myself of a responsibility I didn’t have by telling Stephen that I’d done what I could do. I wanted to be able to say that I tried, I really did, but science is fucked up, man, and I just don’t have a kidney for you. Sorry.
So I told him that I wanted to get tested as a donor, but my blood type was incompatible.
“What’s your blood type?” he asked.
I told him.
“Actually,” he said, “you can still donate an organ. The Rh only matters for blood transfusions, not organ transplants.”
He was talking about that plus or minus sign that comes after a blood type. For blood transfusions, a plus needs to be paired with another plus, regardless the blood type, and a minus generally needs to be paired with another minus. Apparently, the rules are different for organ donation.
“Oh,” I said. “Oh. Well. That’s…interesting. That’s good, though, right? I mean, more potential donors?”
The situation became awkward. Stephen was a perfect gentleman about it, though he made sure to call me out on my self-righteousness.
“Bet you wish you hadn’t said anything now.”
Who, me? Of course not. Don’t be ridiculous. I’m glad to know—
“It’s okay,” he said. “Don’t feel like you have to get tested. I understand. It’s a pain in the ass.”
A pain in the ass, indeed. But then, so is the prospect of end-stage renal disease at the age of thirty. He was right, though: I wished I’d said nothing. Then I could have lived in the delightful security of ignorance, under the impression that I simply couldn’t help because it was out of my control.
But I could help. It wasn’t out of my control.
I told my ex-wife that I had the correct blood type to get tested. She didn’t even pause before saying, “Well, then you should go get tested.”
“But what if you need a kidney someday? I’m a potential donor for you, too. And our future children. With my blood type, I can donate to anybody. Maybe I should hold this card a while longer.”
We talked about it for only a few minutes because the logic was pretty clear. In my thirty-two years, I’d met only three people who needed kidneys, all of whom lived in New York City, which has a population of roughly eight million people. That’s three people in a city of eight million, or .0000375% of the population, and that formula doesn’t even take into consideration the many other places I’ve lived where I didn’t meet any kidney patients at all. The point is that even though the actual need for living kidney donors is certainly higher than .0000375%, it’s extremely unlikely I’ll ever know another person who needs a kidney, let alone someone in my own family, where there is zero history of kidney disease. What sense did it make, then, to hold out for that improbability when I had a friend now who was just months away from renal failure? Besides, who’s to say that I’d be a match? Those were pretty slim odds as well, and if I beat those odds, how could I turn around and say, “Sorry, I’m going to hang on to this in the unlikely event that someone else needs it and I’m a proper match for them”?
I called the transplant center and arranged to be tested.
It takes two weeks of back-and-forth e-mails just to schedule the initial phone screen. When we finally connect, the transplant coordinator, Pam, asks me questions about my medical history and my reasons for donating. I expect my answers about alcohol use, marijuana use, and history of depression to immediately disqualify me, but they don’t. “A lot of potential donors smoke pot these days,” she says. “It no longer disqualifies you.”
You don’t say.
At the end of the call, she says she’d like to move forward with the cross-match testing. There are five others who’ve called expressing an interest, and she’d like to speak to them and set up all the tests around the same time for however many of us decide to go through with it. She expects to be in touch with me soon.
“Soon” is apparently another two weeks. I wonder about the other donors, whether they are the ones holding up the process, or if it’s the transplant team. I wonder who they are and whether or not I know any of them. I’m suddenly intrigued, maybe even strangely excited about the covertness of this whole operation. (I choose not to tell Stephen in case I develop cold feet, though I’ve no real fear that I will.)
I’m also feeling competitive now. Part of me, of course, wants someone else to be deemed a proper fit so that I don’t have to go through with donating an organ, but a baser part of me just wants to win, even though in this case, the winner receives no prize. My brain understands that this is serious, but my instincts still seem to think that this is a game.
A few days after the blood test, Pam e-mails me to say she wants to discuss my results. This makes me nervous, like they’ve found something wrong with me or maybe there are other conditions and stipulations to discuss about my candidacy for organ donation. Expecting a serious discussion, maybe even a late reprimand for my marijuana habit, I e-mail her back right away. It takes her an hour to reply. I spend the time in between refreshing my inbox, wondering what is taking her so long. At the end of the day, we finally connect over the phone.
“So the good news is that you’re a match.”
“You’re kidding. I’m never a match for anything. I’ve never even won a scratch ticket.”
Silence on the other end. Pam doesn’t understand my sense of humor.
“Actually, there were two matches. Stephen is very lucky. The bad news—maybe bad, I don’t know—is that after reviewing both of your files, the surgeon wants to proceed with the other donor first.”
An unexpected sense of disappointment, like when a child opens his last Christmas present only to find that he still did not get the one thing he asked for, creeps over me. For the last month I’ve been mentally preparing myself to be a kidney donor. I’ve read all of the literature and thought about how we’d need to set up the apartment to accommodate my recovery. I’ve developed a gut feeling that I am, somehow, going to end up the donor, and now I have mixed feelings about finding out that I’m not.
Of course, I’m also relieved. Now all of those scenarios I’d imagined, the pain, the time off from work, the discomforts of being inside my own skin—there’s no need to worry about those things anymore. I’ll go on living with two kidneys, one on reserve in case anyone should need it, and Stephen will still get the kidney he needs. Everything in my world will go on as it always has.
But along with relief, I feel one other thing that I did not expect: anger. I’m not angry about someone else being chosen, but about the fact that neither I nor the other potential donor have yet undergone the slew of medical tests required to finalize donor matching. If we both passed the blood cross-match, why not test us at the same time in case one of us doesn’t work out? Pam explains that they don’t want to expose two healthy people to CT scan radiation if they can make do with just one, but I believe the reason is less about compassion and more about cash. Some piece-of-shit insurance company swimming in greenbacks—in this case, Stephen’s insurance—doesn’t want to pay to test two donors at the same time.
I understand the donor process can take a long time if someone has to wait years for a donor to come forward, but Stephen has two potential donors. That the process could stall for weeks, pushing Stephen closer to dialysis—in theory, even death—infuriates me. I want to write letters. I want to make phone calls. I want to lobby a politician to do something useful for a change, pass legislation that forces insurance companies to put their billions of dollars towards health and healing instead of vacation homes and 401(k)'s. I want to do all of these things, but I don’t. Nothing I can do will make a difference with the state of health insurance in America today—not in time for Stephen’s donation anyway. So I just sit and wait.
Two, maybe three weeks pass. I’m just getting used to the idea that I will not be Stephen’s kidney donor—essentially reversing the mental preparation I’d nursed for the first half of the summer—when I get an e-mail from Pam: “First donor was a no-go. You still in?” (OK, it wasn’t quite that informal, but that’s essentially how I read it.)
Now I’m really pissed. Two months have gone to waste while securing a donor for Stephen. I tell Pam that yes, I’m still interested, and in fact I’m eager to get a move on with it. Once more, no sense of urgency. “I’ll be in touch when I can confirm the availability of appointments.”
I think back to the days when I worked at Yale-New Haven Hospital in Connecticut. I was an OR Associate, which is a fancy title for the person who cleans the operating room between cases. Though the job itself wasn’t particularly prestigious, I did learn something of the approach that medical workers take to medicine and treatment. Surgery, for example, is something that doesn’t give me any sort of pause at all, partially because I’ve had three, and partially because I’ve seen so many; it seems more routine to me now than anything else. I’ve had friends announce that a family member has to have surgery to repair or remove cartilage, and while the whole room fills with sorrowful sighs and gasps and exclamations of “Oh, my God!” I sit there wondering what the big deal is. Knee surgery is done all the time. It’s outpatient. You’ll be home in a few hours, high as the Freedom Tower. Everybody chill out.
I realize that in addition to the money issue, this probably accounts for the lack of urgency for Stephen’s transplant. The transplant center staff deals with transplants every day—this is a way of life for them, and even a way of life as critical as organ donation becomes mundane or at least routine to the people who are engaged in it. The transplant center also happens to do liver transplants, which will always take priority over kidney transplants because dialysis, however unpleasant, can keep a person alive. The staff, therefore, sees dialysis as a safe harbor, something that prevents kidney disease from being terminal, and therefore, not as urgent as liver transplants. I don’t know if this is true, but I suspect it is. I have no reason to believe that Pam or anyone else on the transplant team is lazy or simply doesn’t care. I tell these things to myself, but none of it makes me feel any better or less anxious, both for Stephen and now for myself.
My physical tests are scheduled for August 26, a week and a half later. I’m out of town the weekend prior to the appointment, and the transplant center sends a packet that I’ll need to my home address via a private parcel service. The problem is that I live in a shitty apartment in Brooklyn. We have no doorman—we don’t even have a doorbell. So instead of the package, I come home from vacation to find three notes from the parcel service letting me know that they had tried to deliver the package three times, but I was not home. The package was sent back to the carrier facility, a veritable wasteland of orphaned packages—I imagine piles of teddy bears and Valentine’s chocolates and books and bathing suits—lost forever to this city’s outstanding disregard for household accommodations.
Enraged, I send Pam a polite, but stern note about the package. She cheerily replies that she’ll just e-mail the package contents to me. If it was that easy, why didn’t she just e-mail it to me in the first place? Where is the foresight? And if they don’t have foresight in mailing a packet of paper, what can I expect from pre- and post-operative procedures?
On one hand, I’m frustrated simply by the lack of control and influence I have over this process. I’ve always been a person who pushes hard, using logic and articulation to get what I want. When the application of pressure fails to compel someone to accommodate my request, I can get cynical and enraged about the quality of service that’s being offered. This is largely because I don’t ask for things that are unreasonable. I’m not a one-percenter arguing a bill for a service just for the sake of seeing if I can pay less money or get out of doing something I’d prefer not to do. The things I want are, as far as I’m concerned, always just, particularly in this case where I’m advocating not only for my own body, but for my friend’s life. Why can’t anyone understand that this is urgent?
On the other hand, why doesn’t anyone suppose that while I may be calm and collected and even jovial about this on the outside, I’m nervous. I’m scared. I want to know my future. I want to be able to tell Stephen about his future. There are two real lives that the routine of this transplant team and the greed of the insurance companies have left hanging. If I am afraid, Stephen must be terrified. Shouldn’t there be someone on the transplant team to advocate for us, to push the staff along so all of our lives can get back to normal?
It’s been nearly two months since I first had my blood drawn for a cross-match. Since then, I’ve had time to consider the gravity, the joy, and the fear of what I’ve gotten myself into. The irony comes from the fact that all my life, I’ve felt in the core of myself that I was unique, destined for something meaningful, or at least something more than what my family and friends back home had undertaken in their lives. (Not to take anything away from them—I have the utmost respect for what they do, and in fact, they’ve done far more to better the quality of life for others than I have with my silly pursuits.) I once thought I might be a celebrity, or a musician, or a writer, or a film director. A professional basketball player at the very least. I’d never considered that my great contribution to humanity might be the donation of a single kidney to a friend. This is my joy, yet this is also my selfish fear: that this donation, not my dreams or aspirations, will be the only really meaningful thing that I will do in my life.
This fear is accompanied by more typical fears of pain and even the possibility of death. The kidney might be rejected. I might get an infection, lose feeling in my arms (from the surgery), suffer a blood clot or internal bleeding. I may not even live to see Stephen’s life go on. This all might be for nothing. I think about mortality, not so much because I’m afraid of dying, but because life is all I’ve ever known, and death is foreign, uncertain, and without guarantees. If I go under the knife and never come out again, will I know I’ve slipped away? Will I be stuck in a perpetual haze of anesthesia? Will my consciousness find something it has never known before, or does consciousness cease to exist altogether? No one can provide the answers. The only mystery that can rival life is death.
For now, my focus is on the former mystery. I do not intend to die, but I do intend to give what I can so that another may live. If I fail, I will still have the pain. I will still have the scars. I will still have to have someone help me piss and shit and crab-walk backward up the stairs until the pain subsides enough for me to do those things on my own again. I will still never be able to donate another kidney to another person again as long as I’m alive.
But if I succeed, if my kidney takes, Stephen will get back some important years in his life. If I succeed, Stephen will live for at least ten and maybe even twenty years before he needs another transplant. Those years will be his thirties and forties. He will have an opportunity to start a family, nail down his career, enjoy his last youthful decades before middle age begins to noticeably slow the other parts of his body. He will be able to do all of the things that I want to do, some of the things I’ve already done. It’s silly to say that any particular set of years are the most important in a person’s life, but when I hear what it is that Stephen wants from life, and when I hear how dialysis will hinder, maybe even prevent that, any fears or doubts that I have evaporate. I must do this because I would desperately want someone to do it for me.
Life wasn’t made for the body; the body was made for life. All of my body will be gone one day, useless, decayed, turned back to dust. On that day, my body will benefit no one. My body will be dead. So now, while I yet live, I will share my body in a most unusual way so that Stephen, too, may have a chance to use his body to sculpt a life for himself. His body, I understand now, is the greatest gift that he can receive. Without life, there can be no body, and without a body, there can be no life. I want Stephen to have both.
It’s October 2014 now. The transplant team still has not officially approved me for the transplant. As of this writing, they will convene sometime over the next two weeks to determine both Stephen’s fate and mine. In the meantime, I think about what a joyful thing this will be when it’s over, how much closer Stephen and I will likely be as friends. Nestled in the shadows of this anticipation, however, is something else, a comical lesson to myself not about life or love or charity or compassion, but about keeping my mouth shut.
The body electric is the extension of the physical to the metaphysical, the spark of tangible matter that ignites the fire of a collective existence.
J. G. C. Wise writes both fiction and nonfiction in the form of books, essays, short stories, and blogs. Currently, he writes for The Cocktail Novice while also keeping his own blog at www.jgcwise.com, which focuses heavily on kidney donation. His experience as a kidney donor is detailed in his memoir, Fall Risk, which he hopes to have published soon. He is an avid reader, a musician, a mixologist, a kidney donor, and a devoted New York Rangers fan. He lives in Brooklyn, New York.