This is What It's Like to Wait For an Organ Donation
We talked to eight people on the ever-growing list.
Caroline Bauer/EyeM/Getty Images
The waiting lists for an organ transplant are longer than they've ever been. This year, the number of Americans who need an organ will swell to 117,000, an increase of more than 25 percent from ten years ago. As people live longer, the rate of organ failure increases, upping demand. The rate of organs recovered from donors, however, has remained flat. These shortages have dire consequences: Twenty-two people die each day due to a lack of available organs, many of them after languishing in misery for years, plagued by fatigue, anxiety, and the hardships of cumbersome treatments like dialysis. That's one reason why states, which are the main organizers of transplant programs, have floated ideas like automatic enrollment in donor programs, as well as tax credits for live donors. While those efforts continue to stall, we talked to eight people on the list who are still waiting.
Brianne Beers, 28, Blackwood, New Jersey
Waiting: One year and 11 months for a kidney
At ten, I had a few urinary tract infections in a row. I went to the children's hospital in Philadelphia and found out that I had autosomal polycystic kidney disease—I was born with it. During my teenage years, I started to have issues. My kidney, liver, spleen, they're all enlarged and pressing on different things. My spleen was so large it was cutting into my diaphragm; I had a lot of pain.
By the time I graduated nursing school, my kidney function level had dropped a lot—down to 14 percent combined—and I got put on the list. I'm at stage-five kidney failure. That's out of five. Over the last few months, I've been feeling worse. I have swollen feet, I'm nauseous every day, and I'm in pain—they're actually going to remove my left kidney because of all of the pain.
My ultimate plan is to be at the Children's Hospital of Philadelphia. I was there from age ten to 23, and I really love children. I'd like to go back to school, get my Masters, and be a nurse anesthetist, but I'm not able to do that. Since I got sick, my life has gone down the tubes. I'm not feeling good and I'm not able to study. My boyfriend and I broke up—he couldn't deal with me being sick all the time. I'm not exercising, and I'm not hungry, so I'm not living a healthy life. Everything's wrong.
There are two ways to get a kidney. One is a donor. I've had six people tested and none are a match. The other is a cadaver. No one was a match for me, so I have to have a cadaver. Every time the phone rings, I'm anxious. My whole life is up in the air.
Lukeman Harvey, 39, Harrisburg, Pennsylvania
Waiting: Two years and ten months for a kidney
One moment, I am breathing fine and the next I can't breathe, so I went to the doctor that same day. They put me on respiratory medications and ordered chest x-rays; there was fluid around my heart and lungs. My blood pressure was through the roof. I went to the emergency room. The doctor comes in and tells me, "You're in heart failure."
At the time, I didn't know that was a catchall for a lot of different conditions. Then another doctor comes in and says, "You're also in kidney failure." That was June 20th of 2014. I was 36. [The next day], my nephrologist came into the room—a kidney doctor—and told me I needed a transplant. I was tired but I had chalked that up to the hours I was working at the time. I was working in banking. I thought I was getting older and it was par for course. I played basketball. I started with softball. I volunteered on a few boards. I was going through life. I had three kids, a wife.
Everything I do [now] revolves around dialysis, planning for dialysis. I'm always working a few days ahead. So if I know I have to do something tomorrow at 8 in the morning and I know I have to start [my day] at six, I start backtracking. I know I need to be on my machine at 5 or 6 o'clock at night, which means at 4 or 4:30, I need to start the process of getting my supplies ready. You're always thinking about it. I can be physically active, but it's in short spurts. I can't play sports. I have tubing in my arm for dialysis that I can't afford for someone to hit or to get damaged. One of the things that happens when your kidneys fail is that your brain doesn't function as well because of the toxins in your body. Things that are low-stress, those are the things I like to do. When planning, I think, "How long will we be out for?" and "Will there be a place to rest?"
Marty Vece, 46, Las Vegas, Nevada
Waiting: Two years and four months for a heart
I lived with hypertrophic cardiomyopathy for a good ten years, with 45-to-55-percent heart function. I was a little tired at times, but I was still able to work a couple jobs.
During a four-month time, I had three trips to the hospital here for passing out. At one point my lungs were completely filled with water. My cardiologist said, "It's time to get out to UCLA and get evaluated for a heart transplant."
They determined right away that my heart was in incredibly bad shape. In fact, they said, "You're not leaving. We'll have a heart for you within a month." One doctor said, "You got here pretty much in the nick of time. In another six months, you would have been dead."
But then they learned I had an issue with my lungs—my lung pressure was too high, so I had to have open-heart surgery to implant a pump called an LVAD. The doctor told me, "You have to find housing out here for at least six months while we continue with follow ups." It spun us into a chaotic mess—I'm married and I have three young girls.
I now have 15 percent heart function—the LVAD keeps me alive. I can barely make it through the day teaching high school, and I do most of my teaching sitting in a chair. It wears me completely down. And there's a whole process to taking a shower with the LVAD. You have to put the equipment in a shower bag. Then I have to clean my driveline sites and such. I used to be able to take a shower in ten minutes—now it's more like 45. No matter what, you're going to have those dark days, but you want to be as upbeat and positive as you can. Every day that passes, I'm one day closer to that transplant.
Paul Dimartini, 71, Plum, Pennsylvania
Waiting: Eight months for a lung
About ten years ago, I got diagnosed with pulmonary fibrosis by my HMO. They found it on a routine physical. I had been a pack-a-day smoker for 40 years, but they said they don't know what causes this. They think in my case it was from asbestos. I worked for the post office and they had it in the federal building, and then when I was a kid, asbestos was everywhere. They didn't know it was a terrible thing then.
I kept it under control, never really needed anything, even oxygen, for about eight, nine years, anyway. I thought I had it beat. About a year or so ago, I had to start taking oxygen. It just goes downhill faster then. I started out with two liters. I'm at eight now when I do any exercise. It's getting awful hard to do anything. Getting up the stairs is really, really bad.
I had three different callings [for a lung transplant] that went all the way to the pre-op. That's the hard part, especially the first time. I was [at the hospital] for about 16 hours. You can't eat or drink anything so you're pretty hungry, and I really thought I was going to get it. Then they just come in and say, 'You're not getting 'em.' That's a real letdown. You get depressed. I've been there twice again, the same amount of time; that's how long it takes, and I'm okay with it.
I don't count on it too much. I figure when it does happen, I'll feel better. They could call at two in the morning or 12 in the afternoon. It's just day-to-day waiting now.
William Murray, 55, Wilmington, Delaware
Waiting: Three years and eight months on waiting list for a kidney
I was a self-employed plumber working 14 or 15 hours a day, six or seven days a week. Very active. I couldn't stand still for more than three minutes. From the time I was diagnosed with IgA nephropathy [in 1996] to the time I started dialysis, my strength and stamina went down and down.
In that first year [of dialysis], I went to a dark place. There was a lot of anxiety and depression. I didn't want to take anybody else there with me. Right before starting dialysis, I ended up getting divorced. I alienated myself from my mother, my father, my sister, my niece, and my brother-in-law. It's a scary thing. You're just planning the end at that point.
Before I got involved in Gift of Life, I thought you had to be rich or famous or have a lot of money or knew somebody. I was just an average plumber. So to me, there was no way I was getting a transplant. I come to find out that's not the way it works.
When I first went into the transplant center, they told me the average wait is five years. When I went back last July, they told me it was seven years. You've waited three years and you think you're halfway there and then someone moves the goalpost. I do home hemodialysis now. Every morning, I stick two 16-gauge needles in my arm and I tie myself to a machine for three-and-a-half, four hours, and it takes a few hours after that to get my stamina and my function up and get going again.
Two years ago, I got a call from John Hopkins [Hospital]. It was a perfect match. There was a two-hour wait to see if that kidney was viable. There were tears. I called my kids. I called my sister. I called everybody. Two hours went into three hours into four, no response. By that time, I was sitting there, climbing the walls, banging my head against the walls.
I looked up the phone number and I called them back. I got the nurse or the doctor on duty. They said, 'We're overwhelmed right now. We'll call you back in 15 minutes.' Thirty minutes later, they called me back and said the kidney wasn't viable. It was four hours of nail biting. My phone is always charged, always next to me, in case that call comes. I wait like crazy.
Warren Lowe, 54, Buffalo, New York
Waiting: Two years and six months for a heart
I was having bouts with something that felt like a cold or flu or pneumonia. I was hospitalized on and off for about four years, and the doctors didn't know what was wrong with me. After extensive evaluations, one of them determined I had congestive heart failure.
They inserted a pacemaker and an implantable cardioverter-defibrillator. I went two years without an incident and then, one night, all of a sudden I felt a huge bang to the back of my head. I thought someone had broken into our home and hit me with a bat. My wife turned the lights on and started talking. I could see her mouth moving but I couldn't hear her. That's when I put it together; it was the device going off—it had gone off seven times. Twice, I flat-lined.
Now I go three days a week for rehab. I have to exercise—I need to be in some form of [good] shape when the time comes they have a [heart transplant] match, because this condition causes you to constantly feel tired. All you want to do is sleep. Once the transplant is done, I'll have to take 44 pills a day. I'll also have to travel to Cleveland every week for six months, and then every other week for two years. Two of our kids are older, but we also have a 16-year-old and a 14-year-old. We'll have to figure out how they're going to finish school."
Our insurance pays for a lot, but we still get a lot of bills—one 30-day medication costs $317. One of the [heart tests] costs about $4,000. As the father of the household, you expect to be a contributor, and right now I'm in a position where I can't work. I haven't worked for two years. Every time a bill comes in, I have to give it to my wife. She's working two jobs right now, and she was working three, but that was purely impossible. The feeling you get when you have to hand over that bill—yet she never sighs. Well, maybe not never. But she does her best to make me feel like I'm not causing our family to break down, and I appreciate that.
Dashia McLeod, 30, New York, New York
Waiting: Three years and one month for a heart
When I was 11 years old, I was diagnosed with heart failure. I'd been having issues for about a year— shortness of breath, fatigue. My mom took me to several doctors and at first they diagnosed me with different things—the flu, bronchitis—because I was coughing a lot. When they took me to Columbia Presbyterian, that's when they told her it was heart failure.
I was on oral medication [alone] until I was 27. I just took that and went into my regular checkups every month or so. I was sure I was taking my meds as prescribed and didn't understand why I was so tired, why I couldn't walk a block. They had to go inside my heart and measure certain things.
I was on a medical device for two years called a picc line. Last year, in March of 2016, I had open-heart surgery and received an LVAD. As soon as I got the job I wanted—I was working as a real estate agent—and things were going the way I'd planned, it was like, no. I can't go back to work. I can't fulfill those things. I can't travel. It's a lot: having children, getting married, all the things that a 30-year-old would want. It's a lot of things I've put on hold.
As for travel, you don't want to be in another country when a heart is available. I wouldn't want to leave while I'm waiting for something far more important. I've sacrificed too much. I've waited too long.
Tiffanie DeCuir, 38, New York, New York
Waiting: One year and eight months for a liver
It started a little over ten years ago—I got a physical for work and my liver enzymes were abnormal. They did biopsies and sent me for more tests, which said I had [primary sclerosing cholangitis] PSC. I moved from New York to Georgia, and I was sick, but I was working. I was always tired, and my legs were swollen.
I paid for everything out of pocket. My employer—I worked at a preschool—offered insurance, but I couldn't afford it. When I came back to New York years later, I was hospitalized for a week. I had to get Medicaid because I couldn't work anymore. This is the longest I've been out of work, and I'm not used it.
On a typical day, I can go to the store, maybe pick up a few groceries. Sometimes I go visit people, but most of the time I keep to myself. It can get embarrassing: We're having a conversation and I hear you, I see you, I hear what you're saying, but it's not connecting to my brain.
There's a donor shortage in New York—there aren't enough organs to go around, and people aren't signing up. I'm trying to get listed in Atlanta, where I used to live. When the transplant does happen, I feel like I'll finally be myself again. I won't be as depressed. I won't go through all these brain fogs, and I'll be social again. I will be the person I used to be.