For more than 20 years, athletes from around the world have been facing off in everything from badminton to butterfly stroke. The only rule of engagement: You must be the recipient of an organ transplant.
With focused concentration, Leslie Meigs, 25, fixes her aim on the small wooden jack at the end of the pitch used to play pétanque. Although it’s less than 50 feet away, the jack — a ball with roughly the diameter of a plum — is blocked by the larger, grapefruit-sized metal spheres known as boules belonging to her opponent from the Iranian team, Masoumeh Rezaei. To win, Meigs must land her boules closer to the jack than Rezaei’s. And with just one shot left, Meigs, who is representing the U.S. team, is losing.
Wearing a blue USA shirt and matching track pants, the 25-year-old from Houston, Texas, looks the part of an American athlete. But her uniform conceals the lasting marks of the disease that led her to this pitch — the areas of deep scarring from a bout of meningococcal meningitis and septic shock that rotted much of her flesh as a child, bringing her close to the amputation of all her limbs. When she was 18 years old, residual health complications from a childhood illness caught up with Meigs — her kidneys began to fail, and soon she desperately needed a transplant.
Now, six years later, having received a donated kidney from her father, Meigs is healthy again and representing Team USA at the World Transplant Games, a global competition for organ transplant recipients and their donors, held this year in Mar del Plata, Argentina.
It’s August 2015 and the games’ 20th year of competition. The pétanque match is one of 10 happening simultaneously in the giant cinder-block building at the Villa Marista sports ground, on the edge of Mar del Plata. It’s the first day of the games: Old friends reacquaint; new athletes introduce themselves — everyone wrapped in hats and scarves against the biting Argentinian winter. The pétanque competitions are held in a large warehouse; its corrugated walls, high ceilings, and concrete floor give it the feel of an aircraft hangar. Except for a small border around the exterior, the space is divided into dozens of individual pétanque pitches, roughly outlined in wood and filled with sand.
Each athlete is accompanied by a group of supporters — a collection of teammates, family members, and maybe a sponsor or team coordinator. During practice, these invested fans sit in white plastic lawn chairs at the court’s edge. Dressed in team colors, they sip out of plastic foam cups filled with steaming coffee or tea in an effort to stave off the cold. Equipment is strewn on the ground between chairs, bags, hats, coats, boules, and packed lunches. Once the matches begin, they lean over wooden barriers, straining to see where shots land. Referees dressed in white keep score, stepping in with measuring tapes to settle disputes.
First-aid medical staff are on hand, and a local ambulance waits outside ready for emergencies. Teams also travel with their own doctors, physical therapists, and organ transplant specialists familiar with the array of medications these athletes might need and the complicated side effects they might encounter.
Meigs is back on the pitch preparing for her last chance to knock her opponent’s boules out of position. Her movements are methodical. She raises her arm like a tennis player preparing to serve. She stands up straight, cupping the metal boule in both hands. With her heels locked together, she bends her knees while drawing the boule back with her right hand. She brings her arm forward — wrist leading so that she releases the underhand pitch with backspin; her legs stay bent to provide balance and control. Meigs’s shot drops a few inches short and rolls to a stop, without disrupting the arrangement.
She congratulates her opponent. They shake hands, take photos together, and make jokes as supporters join them on the pitch. They are just two of nearly 1,200 athletes from 44 countries who’ve gathered at the weeklong games. Held every two years in different cities around the world, the games host more than 50 events including swimming, track and field, tennis, table tennis, volleyball, badminton, bowling, and squash.
At the Gran Hotel Provincial, located on Mar del Plata’s wintery beach, Team USA gathers for a group photograph. The 37 athletes, their friends and family, trainers, and medical staff fill the lobby of the Biarritz-inspired hotel. A sea of bodies clad in red, white, and blue mingle beneath a vaulted ceiling alongside stone pillars and murals painted at the beginning of the 1900s. The older athletes greet their younger competitors, amiably querying: “What organ have you had? How long have you had it?”
The athletes gathered for the Transplant Games are motivated by more than just the drive of competition or the pride of sporting prowess; they are spurred by the emotional and social support structure that this event offers. For these competitors, the games offer a chance to be immersed in a world where their physical situation is not only understood and shared, but also celebrated. And for younger athletes — or recent organ transplant recipients — meeting peers who have traveled a similar path can be life changing.
And though many sporting competitions pose a physical threat, the risk to these athletes is unique and potentially serious. While contact sports are not on the roster, injuries still happen. At the 2013 Transplant Games in South Africa, Meigs fractured a bone in one of her forearms during volleyball and in 2011, in Sweden, sustained some nasty bruising in handball.
“What organ have you had? How long have you had it?”
All of those competing here will use immunosuppressant medication for the rest of their lives, hindering the body’s ability to heal itself. The site of a patient’s transplanted organ will always be an area of vulnerability; in addition to which, transplant athletes will take great care to protect other parts of their bodies that might have important uses during future treatment. For example, kidney transplant recipients are particularly careful of their arms because efficient future dialysis will depend on strong blood flow through undamaged veins and arteries. And everyone — heart, lung, liver, and kidney transplant recipients — avoids smoking, drinking, and other unhealthy habits.
The first competitive sporting event for transplant recipients took place in Portsmouth, England, in 1978. Started by Maurice Slapak, a consultant transplant surgeon, the games hosted some 99 competitors from the United Kingdom, France, Germany, Greece, and the United States in a one-day event.
In 1987, the World Transplant Games Federation was formed and is now officially recognized by the International Olympic Committee. “We have achieved a 30 percent or better increase in organ donation rates in those countries which have hosted the Games,” said Olivier Coustere, a former WTGF president. The World Transplant Games’ manifesto describes the purpose of the games as to “demonstrate the benefits of successful organ transplantation … [to] increase organ donation rates, as well as promote the full rehabilitation and [well-being] of our participants.”
The eligibility of competing athletes and how the teams are built vary from country to country, but are generally based on athlete age, team size, ability, and funding. The regulations of the games require that a competitor must be post-transplantation and in a healthy enough state to travel and compete in a chosen field. They must also have the money to fund travel, accommodation, application fees, or find funding through sponsorship, somewhere in the ballpark of $5,000 total per athlete.
Teams don’t require “tryouts” for events. Athletes are allowed to compete in whichever events they choose and are encouraged to participate in as many as possible. Realistically, the numbers of healthy athletes with enough money to travel leave little competition for places. Often teams will find commercial sponsors to help with travel costs. And once healthy, post-transplant athletes, with enough money to participate, have enrolled with their national team, they are matched up with their choice of events. From here, the training begins.
For many transplant recipients, a week of Olympic events isn’t feasible. Even for the athletes in attendance, managing the ongoing medical complications associated with maintaining transplant and organ functionality is a constant trial — one that, unlike physical impairments like para- or quadriplegia — remains hidden to the world.
Meigs was 8 years old when she contracted meningococcal meningitis, a rare but serious infection of the tissue lining the brain and spinal cord that can cause paralysis or stroke and is often fatal. She spent two months in an intensive care unit — half of the time in a drug-induced coma. “I remember everything being confusing,” Meigs said during a break at the team’s hotel. “A lot of the medication I was on caused hallucinations, and it’s so hard to remember what was real and what wasn’t.” The final month in the ICU was spent on continuous dialysis, the process by which waste is manually removed from the blood. That caused a lot of seizures, Meigs says, explaining that her doctors were attempting to see if it would improve her kidney function. “That,” she says, “was hell.”
When the infection receded, she was left with large areas of dying flesh caused by the septic shock of the bacteria in her blood. The flesh on her knees and shoulders was damaged to the bone. “The scarring that you can see on my skin was also happening to my flesh and organs on the inside,” she explains.
After Meigs’s discharge from the hospital, she returned three times a week, for five or six hours at a time, for dialysis. She had a temporary hemodialysis catheter installed in her neck, an arterial port that increases blood flow during the process. Eventually, her kidneys regained enough functionality for her to stop dialysis and remove the catheter. With a carefully controlled diet, and regular blood tests, she was fairly healthy for the next 10 years. But as Meigs got older, her scarred kidneys stayed the same size, struggling to function in her fully grown body. The threat of organ failure was a constant concern.
“I don’t really know what healthy is, because I was always taking meds, always going to the hospital for check-ups,” she says. “They were pretty much just waiting for me to lose function again.”
By the time Meigs started college at the University of St Thomas in Houston nearly 10 years later, her health had begun to decline again. As her kidneys failed, toxins built up in her bloodstream; she was vomiting every morning, and her feet had swollen too large to fit her shoes.
When a patient’s organ fails in the United States, he or she embarks on an intake process, which includes psychological, medical, and financial evaluations, before being admitted onto a transplant register. The individual’s case is then presented to a medical review board, which decides his or her eligibility. A patient’s priority on the donor list is determined by a complex set of guidelines established by the Organ Procurement and Transplantation Network (OPTN), and maintained by the United Network for Organ Sharing (UNOS), including age and severity of condition. But even a high placement on the donor register doesn’t guarantee a short wait. Allocation of organs also depends on matching blood type, body size, and immune specificity — the chemical makeup of the patient’s immune system versus the donated organ.
The process of determining organ allocation, as well as the costs of procedures and any relevant medications, varies greatly from country to country. In most European, and especially Scandinavian countries, health care operates as part of a greater welfare system, providing free health care, medication, and social services based on a tax structure. A for-profit organ market is illegal in Europe, and because health care is available to all, a supply of human organs is always in demand.
Iran’s health care system operates on a similar framework to Europe; kidney donation, however, is incentivized by the option to sell the organs legally to a government organization, for the purposes of future transplantation. With the financial incentive a success, in 1999 Iran was able to eliminate its kidney transplantation waiting list.
Until 2008 the Philippines was high on the global list of organ transplant violators. While the sale of human organs has always been illegal, hospitals offered foreigners access to kidneys transplantations, donated by the local population, through a legal loophole. In China, where human rights laws operate in grayer areas, global access to human organs has spurred a legal, but perhaps unethical, market. In the past, China has used its vast supply of incarcerated criminals as a forced donor bank, often matching recipient with convict ahead of time. Convicts would be kept alive prior to a patient’s payment and arrival, and executed for their organs when transplantation was organized. In an article for the World Health Organization, Yosuke Shimazono explains that “transplant tourists” who arrive from abroad will pay somewhere between $70,000 and $160,000 for a transplanted organ at a local clinic.
Living related and unrelated organ donors account for around one-fifth of successful transplantations in the United States, but the majority of organs transplanted are harvested from deceased donors. Deceased organ donation specifications are strict — the organs must come from a brain-dead corpse on full life support, maintaining blood circulation through the organs for as long as possible before harvest and transplantation. A heart can be without blood circulation for only four to six hours before it’s no longer useful for transplantation.
In countries where the definition of death is not the loss of brain function, such as Israel and Egypt, human organs are in huge demand. Illicit markets have begun to flourish, as hopeful recipients join the ranks of transplant tourists and begin their search abroad.
Meanwhile, 10,000 black-market operations occur every year, and one human organ is illegally traded, globally, every hour, says the WHO.
According to the UNOS, in the United States in 2015, nearly 122,000 people were on the organ donor waiting list and only 28,000 organs transplanted. For a patient awaiting a kidney transplant, the worst-case scenario is the relative safety net of dialysis. "The child mortality rate while on dialysis in the United States is very low, as children are at the top of the donor register," says Michael Braun, a pediatric nephrologist at Texas Children’s Hospital, "but for adults who wait longer for transplantation, the mortality rate is 50 percent over a five-year period." For lung, heart, and liver recipients, a decline in organ functionality and available donors can mean death.
Meigs was lucky; in the United States, for kidney donations, family members or friends who match the necessary specifications can give directly to the recipient. In 2009 — around a decade after her initial bout with meningococcal meningitis — Meigs received one of her father’s kidneys. She has named her donated kidney Neal.
The second day of the games kicks off with bowling, located in a smaller venue — part coffee shop and part pool hall a couple of miles across town. It is hardly a professional setup: The lanes themselves are uneven, missing pieces of wood; assistants behind the scenes replace the pins; and scoring is done by hand. The lights are up, fluorescent and glaring; the walls are various shades of pastel. A crowd of spectators, five deep, push up against the wooden benches that separate the eight bowling lanes from the café and pool table, and small disagreements break out between coaches and umpires over various regional scoring methods.
Jasmine Williams, 20, with long curly hair and bright red lipstick, is unfazed. She’s another member of Team USA. She confidently throws a strike and walks back from her lane to high-fives and celebratory dances among the crowd of about 50 U.S. supporters.
Williams has a similar story to Meigs’s. At the age of 8, she went into kidney failure as a result of primary hyperoxaluria type 1. She lacks a particular liver enzyme, causing the body to accumulate excess amounts of a substance called oxalate, which was then passing on to her kidneys, where it was building up — in her case, resulting in organ failure.
“I needed a liver and a kidney so that the liver would finally digest the enzyme and my kidneys would filter it as well,” says Williams.
Her family moved from Louisiana to Houston, Texas for her to receive hemodialysis, a process which removes a patient’s blood and passes it through a machine to remove toxins, before replacing the blood in the body — four hours a day, six days a week. She was added to the organ transplant waiting list. After a year, the hospital found a matching organ on the deceased donor list. Now she proudly wears a large, inverted Y-shaped scar, stretching from her ribs downward across her stomach. The scar tracks across her abdomen, dividing her body into thirds.
Last year, Williams wrote to the family of her donor. Their personal details remain confidential to both the donor’s family and the recipient, and correspondence passes through a neutral organization. Although so far she hasn’t received a reply. She waited 11 years to reach out to her donor’s family.
Successful donation is only the beginning of lifelong medical management for the recipient of a transplant. If a patient receives a transplant from a donor who isn’t an identical twin, they will need to take immunosuppressant medication, daily, for the rest of their lives, in order to quell the body’s natural immune response to attack the foreign organ like a virus — a complication known as rejection.
“There are issues with lipids, cholesterol, and diabetes, all of which are unpleasant but described side effects of the medication that you’re taking to keep your organ transplant,” says Braun, the pediatric nephrologist, “major side effects — hirsutism, terrible acne, cosmetic issues, height issues, questions of self-image, and fitting into a society that is not accepting of people who are different. More aggressive immunosuppression can even lead to loss of the transplant.”
“My future is different. I’ll always wonder how long I’ll live.”
When Meigs describes the side effects of her medication, she talks about full body tremors, back spasms, severe insomnia, anxiety, and depression. “You literally, chemically, can’t feel happy,” she says. “You have to relearn.”
But even with regular medication, rejection episodes are common. Meigs has suffered two rejections — where the body recognizes the transplanted organ as alien, fighting it as it would a virus — from her kidney, and Williams has suffered four from her liver.
“Sometimes I know a rejection is happening,” says Williams. “I’ll get a lot of bumps on my face. There are signs you can look for.” A rejection in its early stages can be treated with intravenous steroids that suppress the immune system further. More serious rejections require surgery.
“My future is different,” says Williams. “I’ll always wonder how long I’ll live.”
On the fourth day of the games, Meigs’s supporters line up on the tiered pine benches that overlook the badminton courts to watch her represent Team USA. She stands alongside her teammate Hamed Pourzargham, who is in his late 20s. He is slim and unassuming, dressed in a plain white shirt and shorts. He warms up on the wooden court, discussing tactics with Meigs. He knows the game well, having competed in it previously as a member of the Iranian national team.
Pourzargham was born in Shiraz, the capital of Iran’s Fars province, in 1987. Four years ago, he competed for his home country in the World Transplant Games in Sweden. Soon afterward, he applied for American residency through the green card lottery and was awarded permanent residency.
Through Iran’s subsidized health care system, and its financially incentivized donation program, he received a kidney transplant from a living unrelated donor while he was living there in 2003. Between badminton matches, Pourzargham splits his time courtside between practicing shots and chatting tactics with Meigs and the U.S. team and catching up with his old friends on the Iranian team, including the nurse who oversaw his transplantation 12 years ago. “We have been close ever since,” says Pourzargham, “and even though I’m now in the U.S., we make sure to message each other every day.”
“In America, the medicine is more expensive for sure. Even with insurance, it’s still more expensive than Iran,” he says. In Iran, Pourzargham was paying no more than $15 per month. Now, he says, he is paying around $100 with his coverage.
“In the United States, people understand a little better,” says Pourzargham. “My boss and colleagues are really cool people; I can get time off to go to the doctor…. I’m very lucky.”
As the games draw to an end, Team USA sits together on the bleachers at the Justo Román athletic stadium, overlooking a parade of baton twirlers and an Argentinian marching band. Meigs trades her USA jacket with a French competitor as a souvenir. Others follow their example, laughing as they don mismatched outfits and ill-fitting shirts.
The U.K. took home the most medals with a total of 246. The United States came in fifth with 87 medals, after Hungary, South Africa, and Argentina. Williams sits calmly amid the celebrations, reflecting on the week’s events. She wears a gold medal around her neck — won at pétanque on the second day — proudly displaying her contribution to the United States’ medal haul.
For the transplant athletes, a bond is created in traveling together, competing, and swapping stories in a shared understanding. Pourzargham offers Meigs one of his badminton rackets, as the pair arranges to train together when they return to Houston. Parties back home are scheduled, nights out, coffee meet-ups, BBQs, and graduation invites. Athletes, supporters, physicians, and family promise their attendance for the 2017 Transplant Games in Málaga, Spain.
“Last year at the National [Transplant] Games, many of the donor families were there. It was so emotional. I cried, and cried, and cried,” says Williams, thinking back to the steps along the way that had led to this moment.
“Someone died for me to have what I have now.”