Three days a week, Hannah Fernald wakes up at 4 a.m. so she can be on dialysis by 4:30. Hannah, 31, was diagnosed with end-stage renal disease, or advanced kidney failure, four years ago. Her doctors suspect her kidney problems began when she was 23, after she gave birth to her son. Undiagnosed high blood pressure likely scarred her kidneys, leaving them barely functioning. Now she relies on nine hours of dialysis a week to keep her alive.
“It really does affect your life daily,” says Hannah, who lives in Angelica, a small town in upstate New York. She quit her job in 2017, once she became too sick to work. She has to schedule everything around her treatments, including caring for her two kids. She’s had fistulas, which are abnormal connections between internal body parts, and five procedures to place catheters; she rarely goes a day without muscle cramps, nausea and exhaustion. If she wants to visit family or friends, she has to make sure there’s a nearby dialysis clinic with an open chair.
When Hannah first learned she’d need a new kidney, she assumed a family member or friend would be able to provide it. Most people can function normally with one kidney, allowing them to donate the other one without jeopardizing their own health.
“I’m literally asking someone to give me part of their body,” Hannah says. “I’m the kind of person who doesn’t like to ask for help with things. But you have to be shameless at the same time.”
Living donation, as the practice is called, is tremendously valuable for a few reasons, including the fact that kidneys from living donors tend to produce better health outcomes for recipients. Living donation also decreases transplant wait time, since no one has to die for a kidney to free up. The US has a short supply of kidneys from deceased donors; more than 100,000 people are on the national kidney transplant list, and 13 of them die each day waiting for an available match. This deficit is at least partly due to an opt-in donation policy, in which people are presumed not to be organ donors unless they give explicit consent.
For all the benefits of living donation, though, the eligibility requirements are strict. A history of substance abuse disqualified Hannah’s husband, even though research has shown excellent outcomes for transplant patients who receive kidneys from overdose victims. Hannah’s neighbor couldn’t donate because her kidneys weren’t filtering blood as well as doctors wanted. Even an EMT who transported Hannah to the hospital during a health crisis went through the donor screening process, only to learn that an artery was wrapped around the kidney she’d need to live on. She couldn’t afford to lose her backup.
I tried to donate too: Hannah has been my best friend since first grade. I was pregnant when she first went on the transplant list in late 2018, but as soon as I was out of the immediate postpartum period, I called Hannah’s transplant team at Strong Memorial Hospital in Rochester, New York — but I didn’t tell her. For two and a half years, I’d watched her joy fade into disappointment with each new prospective donor falling through.
A nurse gave me an overview of the donation process: First, I’d answer a few health questions over the phone. Then I’d do an in-person medical screening near my home in New Hampshire, before connecting directly with Hannah’s transplant team.
I didn’t make it past the initial phone screening. My body mass index was too high, the nurse told me. I asked her if there was any other way to prove I was healthy enough to donate, given that the BMI scale is a notoriously flawed measure of health. Couldn’t I take blood tests, or do a body-fat analysis or a fitness screening? Nope. The only thing I could do, the nurse said, was call back once I’d lost 20 pounds and kept it off for six months.
In the meantime, my friend Hannah — the diehard Boston Bruins fan who knows my siblings as well as I do, who hates not having a middle name and loves wild hair colors — would have to stay on dialysis.
I told Hannah what happened soon afterwards. I couldn’t let her think I didn’t try to help. As deflated as I’d felt after my conversation with the nurse, I could only imagine how Hannah felt hearing the news of another willing donor being rejected.
“It makes you wonder why you keep going to dialysis and keep your appointments with the transplant team,” Hannah told me over text one morning, while hooked up to a dialysis machine, “only to have them turn down every potential opportunity.”
At some point in the future, living kidney donors may become a thing of the past. Scientists are currently working to build artificial kidneys; development on a surgically implanted device called a bioartificial kidney is even further along, with clinical trials expected to begin next year. While these advancements may upend kidney transplantation within the next decade, for now, living donation is still the only solution for thousands of patients living on machines and borrowed time.
Unfortunately, it’s not a solution patients can count on. In 2019, living donations accounted for not quite 6,900 kidney transplants across the country. Public awareness campaigns intended to increase living donation rates, such as the National Kidney Foundation’s “The Big Ask, The Big Give,” have had limited success.
“Living donation has remained pretty flat or decreased over the past years,” says Dr. Stephen Pastan, medical director of the Kidney and Pancreas Transplant Program at Emory Transplant Center in Druid Hills, Georgia. “We’re not exactly sure why.”
One likely factor has to do with potential donors, like me, being turned away. Living donation is an elective medical procedure, and doctors are wary of removing healthy organs — even for the sake of saving lives. If there’s any reason to suspect a potential donor might not be able to thrive with only one kidney later in life, they won’t be allowed to donate.
“It is hard to excuse taking a kidney from someone who has a measurable chance of developing renal failure,” says Dr. Michael F. Daily, section chief of transplant surgery at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire.
Daily, who’s performed nearly 500 kidney transplants, says he accepts 10 percent of potential donors, on average. Weighing the risks of donation is a complicated process. Certain conditions, including obesity, are independently linked to increased risk for kidney failure. But Daily says he doesn’t use BMI cutoffs, or any other hard and fast rules, to assess potential donors.
“We try to look at the overall situation,” says Daily. That means accounting for the emotional impact of the experience. “The fact is that for you,” he told me, “there’s a lot of benefit that would come from you donating to your friend.”
Because of how meaningful it can be to save a loved one’s life, Daily sometimes relaxes the criteria for family members and close friends. But a donor who offers up their kidney to a stranger, for purely altruistic reasons, will be held to higher health standards.
Still, Daily grapples with the fact that he rejects potential donors who will never need their extra kidneys.
“I think we are being less restrictive about who can donate now than we were 10 years ago. But I also admit that we turn down a lot of people who will not develop renal failure,” he says, acknowledging a common charge: that it might be considered overly paternalistic to tell someone who has a 10 percent chance of ever developing kidney disease that they can’t donate. “In the end, we all want to do what we think is right, but what is right may be different for different people.”
Discussions about that difference are playing out in transplant programs across the country, Pastan says. Certain programs, such as one at Johns Hopkins Medical Center, are known to be more liberal in who they’ll accept as donors. Ten years ago, potential donors with conditions such as well-controlled hypertension or hepatitis would have been ruled out automatically. Now they’re at least being considered. Pastan says he expects to see weight restrictions loosen in the future, especially as Americans overall become heavier. I don’t know yet what that means for me, or for Hannah.
It’s been almost 18 months since the nurse told me to lose 20 pounds. I wish I could say that I did it, and that I’m getting ready to give Hannah my kidney. But that’s not the case. Losing weight is hard, even when your best friend’s life is on the line. For me, summoning the gumption to start the donor screening process meant researching the potential impact of donation on future pregnancies, talking to my doctor and my personal trainer, and convincing my husband that any health risks, however small, were worth it. After all that, being shut down for my BMI was really disheartening.
Hannah has now been on the kidney transplant list for just over three years, all the while knowing that the longer she waits for a kidney, the greater her risk of death becomes, even if she gets a transplant. While it takes three to five years, on average, to be matched with a deceased donor, Hannah’s doctors expect she’ll wait five to seven years, due to low donation rates in New York. She’s holding out hope that a living donor — one who can actually pass the screening — will come along first.