What gift is bigger than giving an organ to someone who needs one?
Jen Morse noticed a post on social media. A friend’s brother needed a kidney. He was the father of three. The 28-year-old Scarborough woman assumed someone would sign on to be a donor. She scrolled on, the way one does.
But the months went by and more posts appeared, each more desperate than the last, Morse realized it was possible no one was going to step up. “This man is going to die,” she remembers thinking. “You could see him getting sicker in the photos.”
“Then I thought about my dad,” she says. “And how different my life would have been if he hadn’t been there, and that’s when I really got serious about it. I wanted those kids to have their dad. It was the driving force behind my decision.”
She stepped up. She exercised her superpower and became a living organ donor.
There’s a scene in the first Iron Man movie where Pepper Potts gives Tony Stark the first ARC Reactor he ever made framed in a glass box. While not exactly a heart replacement, the machine acts like an extra-powerful magnet that keeps shards of metal from piercing his heart and killing him. Any one of the 113,000 people in the U.S. currently on the waiting list for an organ transplant might be able to relate. They too have metaphorical shards of death making their way to a vital organ and they, too, need a replacement before it’s too late.
But technology has not yet caught up to our cyborg dreams and time runs out for 20 of those people each day. And every 10 minutes, a new name is added to the list. The majority are waiting for a kidney (about 9 out of 10) and, currently, 1,500 of them are children.
“There is just a different attitude of giving in Maine. It’s just the way people are here. There’s more of a willingness to help others, so we are able to have a strong living donor program.”
Organs fail for many reasons. Kidneys fail most often due to the scourge of diabetes and hypertension in our modern society. Livers get infected with hepatitis. Lungs fail from cystic fibrosis and breathing in toxins. Hearts give out. Disease, infection and injury do not discriminate and many of the people waiting for organs are young and otherwise fit and healthy. Some are babies. Many have just inherited a brutal genetic hand. All share a similar peril, a medical spiral toward the grave. For these people, each day is shadowed by personal darkness, but also a sense of Christmas Eve-like anticipation, because at any moment someone might volunteer to get tested to be a donor, or, even better, they might get “the call” that tells them a compatible organ has been found. When you are on the list, you are told to keep your phone on, charged and near your person at all times. Transplants never sleep, and often people wait for several years on the list.
Most of us have at least a passing acquaintance with organ transplants, even if it is just ticking a box at the Department of Motor Vehicles to register as an organ donor, or recalling when Dick Cheney got his new heart. Now and then we might read someone’s heartfelt plea on social media and think as Jen Morse did—could I? Some of us have excruciatingly intimate knowledge because we or one of our loved ones are on the list or have been transplanted. Few, however, actually become a living donor. Approximately 6,000 of 33,000 transplants performed so far in 2019 were from living donors. About 95% of Americans support organ donation but only 58 percent have signed up to donate after death.
There are many reasons for this shortage in living donors—all as personal as the reasons of those who do step up—but Morse expressed the most likely prevailing one.“I just thought someone else would do it,” she says.
As of this writing, almost 95,000 people in the U.S. are waiting for a kidney. In Maine, there are 125 people on the waiting list for a kidney. The Maine Transplant Program in Portland helps save about 50 of these people each year. Out of that number this past year, more than half came from living donors who “directed” their donations, while eight volunteered to give one of their kidneys to a stranger. This is an astounding percentage of “non-directed donations” relative to the rest of the country.
“There is just a different attitude of giving in Maine,” says Dr. Ana Rossi, Associate Director of Transplantation at Maine Medical Center. “It’s just the way people are here. There’s more of a willingness to help others, so we are able to have a strong living donor program.” Rossi says connecting with those in the program is one of the benefits of her work. “The transplant experience is extremely personal and I get to form these lifelong relationships with the patients, the donors, and all their families. It is very fulfilling. When I meet with these living donors, they are truly inspirational. I think they are just wired differently than a majority of people. Often they have had a pattern of giving in their lives—donating blood, volunteering, the Peace Corps—and they don’t think of themselves as much as they think of others and their duty.”
This is certainly true of Jen Morse, who casually mentions that she is the type of person who stops her car to help small animals at the side of the road. “I think I’m a nice person, and I had a feeling that if I signed up to be tested to give my kidney, it would happen—my friend’s brother and I would be a match—because that’s the way it is with me; so I spent a lot of time considering my choice before I called the transplant clinic and agreed to get tested. Throughout the process, which took seven months, I only had one moment of doubt, right before I went under. But the moment I woke up, I felt like a rock star. I ate a spaghetti dinner. I felt worse the next day, but I was home in four days and only missed two weeks of work, and now, six months later, it’s almost like it never happened. I have a couple tiny scars, but otherwise, nothing is different.”
When asked if she is worried about her own future health, she answers “No. I’m not a hypothetical person, and if anything were to happen to my own kidney, I would shoot to the top of the list to receive a new one. I mean, I might fall and hit my head on a rock, too.” She stops herself and then adds, “I’m actually more confident of my health now. They checked everything and I’m still being monitored. Most people don’t understand how hard it is to actually qualify to donate. It makes me wonder why more people don’t sign up to at least get tested. They can opt out at anytime and if any medical concern or resistance comes up, it’s a hard stop.”
The minimum requirements to become a living donor are that you be 18 years old and in good overall physical and mental health. But that’s a bit of an understatement. As Paul Conway, the head of the American Association of Kidney Patients and a kidney transplant recipient has noted, “If you get cleared to be a living donor, you are a superhero in more ways than one.” That’s because potential donors have to pass a succession of tests that drill down on every aspect of their physical and mental health—all paid for by the recipient’s insurance or the National Living Donor Assistance Center. If the donor and recipient know one another and are a match, surgery can be scheduled at their convenience. If the donor is a non-directed donor or entering into an exchange, their data is stored, along with all the data from deceased donors, in a national database (called the United Network for Organ Sharing, or UNOS) that is continuously updated and filtered like some enormous game of digital Bingo. Once a compatible donor and recipient are found, the call is made and surgery gets the green light.
And what a difference that surgery can make. If you have ever watered a wilting plant and watched it revive, you have some idea. Like the Vermont woman whose husband received a transplant six months ago from a deceased donor in Maine. (She asked not to be identified by name; privacy is a concern for many, primarily because of fears around losing health care.) He had been on dialysis for seven years and was depressed to the point of wanting to give up. “He’d look at me and say, ‘I just can’t do this. I can’t do it one more day, just let me go to hospice.’ I kept telling him it would happen for him. But after you watch six or seven of your friends die on dialysis, you start to lose faith. I swear if we hadn’t gotten that call when we did, he would have died that month.” Now, six months later, her husband is playing with their grandkids and “doing absolutely fantastic. I mean, there are stumbles, but overall he’s great. His donor made the fight worth it.”
A few years ago, Johns Hopkins started an online trial with an app, which potential organ recipients can use to upload their information and personal stories to social media so potential donors can read about them. About 30 Mainers have participated so far. Johns Hopkins found in early trials that patients who used the app were six times more likely to have a potential donor come forward. (To learn more about donating, visit mmc.donorscreen.org.)
Despite the ability to set your karma up for eternity there remains the truth that most people feel freaked out by the idea of organ donation—even after they are dead. The medical data is sound around both kinds of donations and the long-term gains of living donation are felt by both parties—as any quick search of personal stories at #livingdonor on Instagram will attest—yet the queasy factor remains. Feelings about bodily integrity are foundational and deeply personal and not every living donor has a positive experience. They fear they will suffer or be disadvantaged, in this life or the afterlife, or not feel whole or healthy anymore. These feelings are reasonable and should be examined in light of the reality that another 20 people will die today and another 20 tomorrow. In the time it took to read this, one more name has gone on the waiting list. One day it might be yours, or your sibling, or your child. How will you feel then? What will you do?
I had to learn the hard way.
Ten years ago, I found out I had a genetic disease that was slowly killing my kidneys. I now carry the kidney of a 19-year-old who died a few days after Thanksgiving last year. I don’t know anything else concrete about my donor, except that the first few months after surgery were filled with despair and an impossible guilt about him or her. I felt like a vampire, fueling my life with theirs, and I wanted to trade back. All around me people were saying “congratulations” and it made me cringe. A kid—somebody’s baby—was dead. It felt intolerable to me, grateful as I was. But, then, one day, a voice whispered through my body. It said, “C’mon, enough suffering. Let’s do this.” I knew who it was, and what they meant, so I took my donor hiking in Joshua Tree; and every day since then, I do things and say yes to things because I know my donor will like them. I am their portal to the earthly world, and they are mine to something far more vast and intangible: a future. Until you have wrestled heaven at the edge of your own mortality, you cannot know how profound a gift the future is. And to think, we, mere mortals, walk around every day with the power to give it to someone else.
- Living donors can give a kidney, parts of their liver, lung or intestine, bone marrow and blood.
- A deceased donor has the potential to give a heart, kidneys, liver, lungs, pancreas, corneas, intestinal wall, skin, veins and many other tissues.
- To register as an organ donor in Maine, visit your local DMV or online through organdonor.gov.
- To volunteer to be tested to be a potential living donor, contact the Maine Transplant Program at 207–662–7180, or register online. The testing process begins with an online questionnaire. Donations can be directed to a certain individual, non-directed or used in a paired exchange if you want a directed donation but are not a good match. In a paired exchange, your donation will be paired with an unrelated matching recipient in exchange for an unrelated donation that matches your directive. To learn more about being a living donor from people who already are one, or read the personal stories of potential recipients with whom you might be a match, visit organdonor.gov.
Genevieve Morgan is an editor and the author of the Five Stones Trilogy (Islandport Press). She lives in Portland.