Amy Nadel waited in a waiting area at Johns Hopkins on a hot June day as one of her kids was leaving surgery and another was getting ready to go in. Another family was witnessing the same event in a room that was comparable but located in a different area of the hospital. They were connected by the life-saving organs they were going to sell, not by chance.
Jonah Berke, Nadel’s son, had just had kidney removal, and his organ was swiftly sent to another patient across the hospital in a sterile cooler. Rachael Moskowitz, her daughter, was also getting set to get a kidney that had just arrived from an unidentified donor someplace else in the medical centre. You might think that anything like this only occurs in Grey’s Anatomy episodes. But one method people can get kidney transplants is through this spectacular procedure known as kidney paired donation (KPD).
One couple in this type of giving was Nadel’s children. Following years of difficult health struggles for his sister Rachael, Jonah made the decision to make a donation in her honour. The entire family came at Hopkins with hope and a fully loaded Netflix queue, prepared for a new chance at life after countless doctor’s appointments, numerous operations, and countless hours fearing for Rachael’s health.
Nadel takes delight in remembering that difficult day. Everyone believes their children are unique, she claims, but she can’t help but reflect that “my kids started from below zero, and look where they are.”
As strange as it may sound, Rachael’s family was fortunate since another person also received a kidney. Donations of two kidneys together are quite uncommon. The average time it takes for a renal failure patient to hear that a donor organ is available is 4 years. Each year, about 5,000 people pass away while waiting on that list. David Klassen, MD, the chief medical officer at the United Network for Organ Sharing, argues that if more people were ready to sign up for KPD, the waiting period might shorten.
In 1954, the twin brother of a live donor underwent the first successful kidney transplant. That procedure served as the norm for organ donation for a while because taking organs from deceased donors made society uncomfortable. After some time, in the middle of the 1960s, new standards from Harvard Medical School about brain death made it possible for donations from the deceased to become widespread.
Another choice is living donation, in which one person gives one of their healthy kidneys to another, allowing them to continue living a normal life with just one healthy kidney. If maintained and transferred properly, a freshly removed kidney can survive for up to 36 hours outside of the body, which has permitted some living kidney donations to take place across state boundaries.
The recipient of the kidney must take a specific medicine after the transplant to prevent their immune system from fighting the new organ. Immunosuppression is what causes this, and the majority of immunosuppressant medications have unfavourable side effects. Since their immune systems are compromised after transplantation, recipients are more prone to infections and malignancies than the general population. However, if the medications are effective and the body does not reject the organ, a transplanted kidney typically lasts 15 to 20 years.
Direct living and deceased donation were the sole alternatives available to those in need of a kidney transplant for many years. But the first kidney paired donation was carried out in 1991 by medical professionals in South Korea. By starting a government-run KPD programme within a decade, they were ahead of the curve. In 2000, the US caught up, finishing the nation’s first KPD at Rhode Island Hospital. However, neither the adoption nor the pace of this new protocol were general. According to information from the Organ Procurement and Transplantation Network, there were just 26 KPDs annually in the United States by 2005.
There were a few reasons for the slow acceptance. First of all, not many individuals were aware of the option, according to Susan Rees, a licenced nurse who serves as the Alliance for Paired Kidney Donation’s chief operations officer. Therefore, the story came to an end when someone learned they weren’t a match for the recipient of their living organs. Second, standardising the data set took some time. With the necessity to create a matching database and the demand for numerous entities across different cities and states to collaborate in order to assemble and compare their data, Rees refers to KPDs as a “team sport.” Beginning in its native state of Ohio, the alliance was one of the first charities to gather this information.
The third reason for the tardy adoption of KPD, according to Klassen, was legal uncertainty surrounding the procedure. Initially, the law did not provide protection for the movement of organs across states for uses other than direct donation. This was supposed to discourage organ smugglers. However, the Charlie Norwood Act, which was passed by Congress in 2007, ensured that paired donation was permissible in certain medical situations.
KPDs have grown in number today, but they are still uncommon. Over 10,000 kidney pairs have been donated in the United States since 1998, or just over 5% of the 173,000 total living donations. The donations made by the other 95% of live donors were direct matches. These are the customary gifts that siblings, friends, or parents and children exchange.
Rachael is not at all the kind of person you would anticipate needing a kidney transplant. She is a young mother and a full-time first-grade teacher at the age of 36. However, she has a convoluted medical background that includes a disease of glycogen storage, a history of blood transfusions, a previous liver transplant, a preterm pregnancy, and chronic immunosuppressive medication use. Rachael’s nephrologist informed her that each one of those might have gradually left scars on her kidneys, causing renal failure.
Rachael had to start dialysis in April 2020 as a result of that failure. Rachael was caring for her 1-year-old kid in addition to teaching online because the virus had caused the globe to shut down. Even with her husband and family’s help, she found it difficult to balance her several, protracted dialysis visits each week with her regular life. She promptly decided to transition to peritoneal dialysis, allowing her to receive the treatment each evening at home.
She claims that despite the improvement, this wasn’t a very pleasant way to live. She had little energy, the logistics were complicated, and it was preventing her from spending quality time with her daughter. She acknowledges that even though the machine kept her alive, she feels as though she missed out on two years of life.
This concurs with what medical professionals also observe. According to Rees, dialysis is a form of treatment but it cannot take the place of a healthy kidney. Even after the surgery, alleviation only lasts for a short while. The patients are worn out the next day, according to Rees. She has even witnessed folks suffer through financial troubles and lose their jobs as a result of the logistical challenges and exhaustion.
Many people in Rachael’s life joined up to check whether they were a match while she was receiving dialysis and waited for a kidney. They found out one by one that nobody was. There are numerous reasons why a person might not be an organ donor match. However, a few factors can cause someone to produce more pan reactive antibodies, which makes it more challenging to match them. These include previous transplants, pregnancy, and blood transfusions in the past. Rachael was what Rees refers to as a “highly sensitised patient” because she had all three.
Even with all of those additional problems, Jonah offered to join the KPD donor pool, which allowed him to quickly resolve the situation that would have taken Rachael years to resolve. This is how that pool functions.
Recall the memory matching games you enjoyed playing as a child. The database acts as your proxy and memory storage. All of the cards are first turned over and have blank donor profiles.
You begin with Person 1, who need a kidney, which is Rachael in this instance. A pink circle represents Person 1. You then turn over Person 2, who is willing to donate a kidney, which is Jonah in this instance. Individual 2 is a purple triangle, though.
A mismatch. We therefore deal another card. It turns out that Person 3 is yet another kidney recipient. They match Jonah since they are a purple triangular. The willing donor who is linked with Rachael is person 4, represented by a pink circle on the card’s reverse. YAY for matched couples!
A kidney transplant from person 1 to person 4 and from person 3 to person 2 is possible thanks to the database. The number of matches will determine how long this chain lasts. There have been chains as long as ten pairs.
This may appear to be a major logistical headache. What about organ donation from deceased individuals, you might be wondering. Of course, signing up to be an organ donor is a crucial component of this jigsaw.
The Berke/Nadel family, Klassen, Rees, and Rees all urge individuals to register as organ donors. However, Klassen estimates that just 2% of registered donors will actually be able to donate their organs. A person must pass away in a hospital while receiving life support for it to be a viable option. Otherwise, their only real option is to donate tissue. We are now back where we were when we started. According to Rees, a person with renal failure must wait an average of 4 years for treatment, during which time they have a 15% to 20% probability of passing away.
The problem is less serious when KPD is included, though. That is, if the necessary database exists and a sufficient number of people are ready to sign up. Currently, there are distinct databases for participants in KPD all around the nation and the globe. Although they don’t have all the data, the United Network for Organ Sharing and the Alliance for Paired Kidney Donation contain some of the larger aggregates. Standardization, according to Rees, would be beneficial.
There are more opportunities for matches as there are more persons in the database. Rees claims that the people she has observed feel content despite the fact that some people could feel awkward about not giving directly to the recipient they had in mind.
This was just a small hiccup in the journey for Jonah, who wanted to help his sister.
Actually, he continues, “saving two lives with your kidney is like saving just one.”
Since the donation, everything has altered for Rachael, including her skin tone, necessitating the purchase of a new foundation shade. She is now aware of how miserable she was on dialysis every day. She is thankful for the sacrifices made by Jonah and the unknown donor, but she is most thankful for her ability to return to the living world.
Jonah’s life has also resumed its previous course. He made a quick recovery and is now back working at the profession he loves with his trademark positive outlook. In fact, he’s doing so well that he declared he would have surgery once again if given the chance. Anything would be done for his sister. “I would give my other kidney if I could. I wouldn’t even consider doing it. I’ll tell you what, if I could donate my heart, I would.