On a warm summer day in June, Amy Nadel sat in a waiting room at Johns Hopkins as one of her children was coming out of the operating room and another was preparing go in. And in a similar room in another part of the hospital, another family was sitting through the same thing. They were linked not by coincidence, but by one life-saving thing they were about to trade: kidneys.
Nadel’s son Jonah Berke had just had one of his kidneys removed, where it was rushed across the hospital in a sterile cooler to be transplanted into an anonymous recipient. At the same time, her daughter Rachael Moskowitz was ready to receive a kidney that had just come from an anonymous donor somewhere else in the hospital. You’d be forgiven for thinking this sort of thing only happens in a Grey’s Anatomy episode. But this dramatic process, called kidney paired donation (KPD), is one of the ways people may receive kidney transplants.
Nadel’s kids were one pair in this sort of donation. Jonah had decided to donate to benefit his sister Rachael, after she had gone through years of complicated health battles. After untold doctors’ appointments, numerous surgeries, and countless hours worrying for Rachael’s well-being, the whole family arrived at Hopkins with hope and a fully loaded Netflix queue, ready for a new chance at life.
Nadel looks back on that tense day with pride. She says everyone thinks their kids are special, but she can’t help but think, “My kids started from below zero, and look where they are.”
As odd as it may sound, their family was lucky – Rachael got her kidney and someone else did too. But kidney paired donations are far from the norm. Most people in kidney failure wait an average of 4 years before they get the call that a donor organ is available. Nearly 5,000 people die each year waiting on that list. But if more people were willing to sign up for KPD, that waiting time may shrink, says David Klassen, MD, the chief medical officer at the United Network for Organ Sharing.
The first successful kidney transplant took place in 1954, using a live donor’s twin brother. For a while, that was the standard route for donating the organ, as society felt squeamish about using organs from deceased donors. Eventually, around the mid-1960s, new guidelines about brain death from Harvard Medical school allowed donations from the deceased to become commonplace.
Living donation is also an option, whereby one person donates one of their healthy kidneys (as it’s possible to live a healthy life with just one functioning kidney) to another person. A recently removed kidney can last for an estimated 36 hours outside of the body, if stored and transported correctly, which has allowed for some living kidney donations to happen across state lines.
After the transplant, the person who received the kidney must be on a type of medication that stops their immune system from attacking the new organ. This is called immunosuppression, and most immunosuppressant drugs come with unpleasant side effects. People who get transplants are particularly susceptible to infections and cancer, among other diseases, since their immune system can’t fight at the level it normally would. But if the drugs work properly and the organ does not get rejected by the body, a donated kidney will usually last about 15 to 20 years.
For decades, direct living and deceased donation were the only options for people seeking a kidney transplant. But in 1991, doctors in South Korea performed the first known kidney paired donation. They were ahead of the curve, establishing a government-run KPD program within the decade. The United States caught up in 2000, completing the country’s first KPD at Rhode Island Hospital. But the use of this new protocol was neither universal nor speedy. By 2005, there were only 26 KPDs per year in the U.S., according to data from the Organ Procurement and Transplantation Network.
The slow uptake was owing to a few issues. First, not many people knew about the option, says Susan Rees, a registered nurse and the chief operating officer for the Alliance for Paired Kidney Donation. So, when someone found out they weren’t a match for the person they intended to be a live donor for, the story ended there. Second, it took a while to standardize the data set. Rees calls KPDs a “team sport,” with the need to establish a matching database, and the requirement for multiple entities across different cities and states to work together to compile and compare their data. The alliance was one of the first nonprofits to compile this data, beginning in their home state of Ohio.
The third reason the uptake of KPD was slow was legal concerns about the process, says Klassen. Transporting organs across state lines for purposes other than direct donation wasn’t protected by the law at first. This was thought to deter organ traffickers. But in 2007, Congress passed the Charlie Norwood Act, which assured the legality of paired donation in specific medical circumstances.
So today, KPDs have increased, but they’re still not common. Since 1998, there have been slightly over 10,000 kidney paired donations in the U.S., which is a little over 5% of the total 173,000 living donations. The other 95% of living donors were direct match donations. These are the typical donations you hear about, between siblings, friends, or parents and children.
Rachael is by no means the typical person you’d expect to need a kidney transplant. At 36 years old, she’s a young mom and a full-time first-grade teacher. But she has a complicated medical history, including a glycogen storage disorder, a history of blood transfusions, a former liver transplant, a premature pregnancy, and long-term use of immunosuppressants. Each of those may have scarred her kidneys over time, leading to renal failure, Rachael was told by her nephrologist.
That failure meant Rachael had to begin dialysis in April of 2020. Not only had the world shut down due to the pandemic, meaning Rachael had to adapt to online teaching, but she was also caring for her 1-year-old daughter. Even with the support of her husband and family, it was exhausting balancing multiple long dialysis appointments each week with normal life. She quickly opted to switch to peritoneal dialysis, which allowed her to get the procedure at home each night instead.
Though this was an improvement, she says it wasn’t much of a way to live. The logistics were difficult, she had very low energy, and it was getting in the way of her spending valuable time with her daughter. So, though she’s grateful for the machine that kept her alive, “it was like I missed out on life for 2 years,” she says of that time.
This is consistent with what providers see too. Dialysis is a treatment, but it’s not a replacement for a functioning kidney, Rees says. Even after the procedure, there’s only a brief window of relief. Rees says that the next day, the patients are exhausted. And because of the logistical difficulties and fatigue, she’s even seen people lose their jobs and go through financial crises.
While she was going through dialysis, and on a waiting list for a kidney, many people in Rachael’s life signed up to see if they were a match. One by one, they discovered no one was. There are many reasons someone may not be a match for organ donations. But there are a few things that make a person develop more pan reactive antibodies, which make it harder to match them. These include prior blood transfusions, pregnancy, and previous transplant. Rachael had had all three, making her what Rees calls a highly sensitized patient.
Even with all those compounding issues, what would’ve taken Rachael untold years was solved in mere months, when Jonah volunteered to enter the KPD donor pool. Here’s how that pool works.
Think of those memory matching games you used to play as a kid. The database serves as the memory storage, the proxy for you. All the cards start flipped over, with unknown donor profiles.
You start with one card, person 1 (in this case, Rachael) who needs a kidney. Person 1 is a pink circle. You then flip over a second card, person 2 (in this case, Jonah) who is willing to donate a kidney. But person 2 is a purple triangle.
No match. So, we pull another card. Person 3 turns out to be another person who needs a kidney. They’re a purple triangle, a match for Jonah. And when we flip the accompanying card, we find person 4, a pink circle, a willing donor matched to Rachael. Hurray, matching pairs!
Because of the database, person 1 can get a kidney from person 4 and person 3 can get a kidney from person 2. This chain can continue on and on, depending on how many people match. There have been chains up to 10 pairs long.
This may sound like a big logistical nightmare. You may be thinking, what about organ donation from deceased people? And of course, registering to be an organ donor is an important piece of this puzzle.
Both Klassen and Rees and the Berke/Nadel family urge people to sign up to be an organ donor. But only about 2% of people who are registered donors will end up being able to donate their organs, Klassen says. To be a valid option, someone must die while on life support in the hospital. Otherwise, they are pretty much only able to donate tissue. That leaves us at the starting point set out earlier. A person in kidney failure has an average of 4 years waiting time, and each year, that person has a 15%-20% chance of dying while waiting, Rees explains.
But adding in KPD makes the situation less dire. That is, if there is the database to support it and enough people are willing to sign up. At this point, there are separate databases for people to take part in KPD across the country and the world. The United Network for Organ Sharing and the Alliance for Paired Kidney Donation have some of the bigger aggregates, but they are far from having all the data. Rees says standardization would help.
The more people in the database, the more possibilities there are for people to match. Though some people may be uncomfortable not directly donating to the person they intended to, Rees says the people she’s observed feel pleased anyway.
In Jonah’s case of wanting to donate to his sister, this served as only a minor bump in the road.
“Well really, it’s like saving two lives with your kidney, not just one,” he says.
For Rachael, everything has changed since the donation; even her skin tone, requiring her to buy a new color of foundation. She realizes now how bad she felt each day while on dialysis. But above all, she’s grateful for the sacrifices Jonah and the anonymous donor made, and she’s grateful to be able to rejoin the living world.
And as for Jonah, life has returned to normal. His recovery was speedy, and he’s back doing the job he loves with his typical cheerful attitude. He’s doing so well, in fact, that if he could go under the knife again, he said he would. He would do anything for his sister. “If I could donate my other kidney, I would do it. I wouldn’t even think about it. You know, if I could donate my heart, I would give my heart up.”
Jonah Berke, kidney donor.
Rachael Moskowitz, kidney recipient.
Amy Nadel, Jonah and Rachael’s mom.
David Klassen, MD, chief medical officer, United Network for Organ Sharing.
Susan Rees, registered nurse; chief operating officer, Alliance for Paired Kidney Donation.