Waiting out a pandemic

In 2003, registered nurse Michael Twitchell accidentally discovered he had a rare heart disorder while troubleshooting an electrocardiogram monitor. He attached the leads to his chest and saw “some really weird EKGs,” he says. A year later, he received a diagnosis: idiopathic restrictive cardiomyopathy, a condition that expands the heart’s atria, or upper chambers, like balloons. Without a heart transplant, patients with the disease will die because their heart cannot pump enough blood.

Twitchell had no symptoms. He resumed his active lifestyle in western Colorado, cycling, hiking, and practicing tae kwan do. He often cooked for his wife and two children. But in 2018, his heart went into atrial fibrillation, when the atria quiver and beat out of sync with the lower heart. After unsuccessful treatments, Twitchell’s doctor recommended a heart transplant.

Michael Twitchell with a Swan-Ganz catheter going through his neck and into his heart to measure internal pressures. Handout

Twitchell joined the organ transplant waitlist on Nov. 7, 2018, and over the next year, his symptoms worsened. He and his wife moved to Denver to be near the state’s only transplant center. Twitchell could no longer work, and he used a power chair to visit museums and attend social gatherings. On good days, he could take half-mile walks. He slept in the afternoons to have energy to cook dinner. Still, his body was compensating too well: He was not a priority on the waitlist.

Then a pandemic hit. In March and April, as the coronavirus spread and hospitals braced for COVID-19 patients, heart donations plummeted. Twitchell’s long wait is now likely to take even longer.

The coronavirus outbreak has delivered a setback to the U.S. transplant program, responsible for providing more than 30,000 organs to patients each year. As hospitals across the country canceled elective surgeries to avoid spreading the virus, they also canceled or postponed many transplant operations. In other cases, transplant candidates declined available organs because of fears of contracting COVID-19. Current figures from the donation program show transplants have decreased by 6 percent this year so far.

The downturn in life-saving organ donations could reverse a growth trend for the program. Last year marked the seventh consecutive year of record-high U.S. organ transplants—39,719 total. The long-term increase has come amid increased donor registrations and improved transplant procedures. Less happily, an increase in opioid overdose deaths has also helped drive the donation uptick.

To better understand the pandemic’s impact on the transplant program, WORLD reviewed data from the Organ Procurement and Transplantation Network (OPTN), which tracks organ transplants throughout the United States. The data suggest that, before the pandemic struck, organ transplants this year were on pace to set yet another record: The program logged a total of 6,807 transplants in January and February—an increase of nearly 12 percent from the same months of 2019.

“This COVID crisis has clearly shut that growth off,” noted Dr. Richard Formica, president of the American Society of Transplantation.

OPTN figures show how the surgeries plummeted after the coronavirus arrived: In March and April, transplants dropped by 26 percent compared with the previous two months. Heart transplants dropped by 15 percent, lung transplants by 31 percent.

Source: United Network for Organ Sharing

Source: United Network for Organ Sharing

The decrease is significant for people awaiting a new organ. Twitchell is one of nearly 2,000 U.S. patients who have already waited a year or more for a heart transplant.

For them, the hardest part is the unknown.

“You never know when an organ could be available,” Twitchell said. “You never know when you’re absolutely going to crash and your heart’s finally going to just give out on you.”

AS THE PANDEMIC DESCENDED on the United States, hospitals prepared for an expected influx of COVID-19 patients. They converted operating rooms into intensive care units or coronavirus wards. They reserved masks, gloves, ICU beds, and ventilators for COVID-19 patients. Many shifted appointments to video platforms and canceled (often by government mandate) any surgeries and procedures they could—including some organ transplants.

Sometimes, transplants can wait. Patients waiting for a new kidney can use dialysis machines to clean their blood in the meantime. For heart patients, a left ventricular assist device can sometimes keep a heart pumping. Other times, the transplant can’t wait. For these patients, each day waiting for an organ is another day of deteriorating health.

Teresa Toro, 60, spent most of 2020 in a Florida hospital. Toro has alpha-1 anti-trypsin deficiency, a genetic condition that can make it difficult to breathe. A double-lung transplant in 2016 sustained her for four years, but last December. her body began rejecting the lungs. She was hospitalized in January.

As COVID-19 spread across the country, Toro’s hospital decided to halt transplant surgeries temporarily. But her condition worsened until doctors predicted she had only a month to live. Three days before the end of her month, a donor lung became available. Toro received her lung transplant on April 18.

But even if a hospital is willing to schedule a vital transplant surgery, there can’t be a surgery without a donor: The number of “deceased” donors—people who died and donated their organs—dropped 18 percent in March and April, compared with the previous two months.

Kevin Cmunt runs Gift of Hope, an organ procurement organization (OPO) in Illinois. His staff talks with potential donor families and recovers organs from deceased donors. In the first half of March, Gift of Hope had 20 organ donors and 50 transplants. But in the second half, it had only seven donors and 17 transplants. “That’s a cliff,” said Cmunt. Some of his staff nurses volunteered at the hospital to stay busy.

Kevin Cmunt speaks to a child at a Gift of Hope event. Gift of Hope

Cmunt described the drop-off as a result of Americans staying at home during the early weeks of the coronavirus outbreak: Fewer traffic accidents and work accidents meant fewer people suffered traumatic brain injuries that would make them potential donors.

The National Safety Council reported preliminary data from March showing the total number of U.S. traffic fatalities in March decreased 8 percent as people stayed home from work and avoided nonessential travel.

That’s wonderful news for motorists. But it also means fewer than expected organs for transplant candidates. OPTN data shows 500 traffic victims became organ donors from January to May this year, down 7 percent from last year’s total for those months.

Cmunt said his organization has also seen significantly fewer heart attack and stroke victims. People are still dying from those conditions, but some have died at home instead of in the emergency room, possibly because they feared going to the ER and catching the coronavirus. To be an organ donor, a person must die in a hospital, where a ventilator can keep oxygen flowing to the organs until a team can remove them. Organs must be transplanted to recipients within a few hours, or they become useless.

(A single deceased donor can provide organs for up to eight transplants. If a patient dies without registering as an organ donor, OPOs send a team to ask the person’s family members if they consent to donation.)

Hundreds of postponed transplants in March and April involved living donors, who can donate a kidney or partial liver. Hospitals concerned about the coronavirus typically rescheduled such surgeries for later dates (see sidebar below).

Ty Poell speaks with Natalie Frese after receiving one of her kidneys in a transplant operation. Jill Toyoshiba /The Kansas City Star via AP

Patients needing a transplant go through extensive testing and evaluation before earning a place on the transplant waitlist. When a donor becomes available, the OPO enters his or her medical information into a nationwide computer database. The system uses factors like location, progression of illness, and time on the waitlist to generate a list of potential recipients. The OPO team then contacts the hospitals of the top-matched patients and offers the organ. When someone accepts, the surgery can happen within hours.

The waitlist had 110,266 people as of June 30. Even in the best times, candidates on the waitlist outnumber available organs. Plus, some people become too sick for a transplant and die after leaving the waitlist, and others need an organ but are not yet sick enough to be listed.

The United Network for Organ Sharing (UNOS), the nonprofit that manages U.S. organ transplants, says around 17 people on the waitlist died every day in 2018.

So far this year, deaths among sick waitlist patients do not appear to have increased, but it may take more time to see the full picture.

“I think the waitlist mortality will blip up, but I don’t know,” said Dr. Marwan Abouljoud, a liver surgeon and president of the American Society of Transplant Surgeons. “Their illness did not stop while organ donation was slowing down.”

Because of the pandemic, some waitlist patients are temporarily “inactive,” meaning they will not accept organ offers. In mid-March, UNOS, which runs the OPTN under a contract with the federal government, created a new code to track such patients—“inactive due to COVID-19.” The first week, 1,100 patients became inactive under the new code. The next week, the number more than doubled. Anne Paschke at UNOS said the code covers patients who had COVID-19, were exposed to it, or feared catching it in the hospital.

“Transplant centers and patients have to weigh the risk of getting a transplant, becoming immunosuppressed and then potentially exposed to the coronavirus versus the risk of not getting a transplant,” Paschke said. In mid-May, more than 3,700 waitlist patients were inactive due to COVID-19.

Transplant programs can also decline to accept a particular organ for a particular patient for various reasons. In March UNOS implemented new refusal codes to help track the impact of the coronavirus. Preliminary data viewed by WORLD show that from March 25 to May 3, transplant programs refused transplant organ offers 232,455 times due to coronavirus-related reasons. (One organ may have multiple refusals.) Those reasons could include donors or transplant candidates who had either tested positive for the virus or been exposed to it, or temporary shortages of transplant program workers or available operating rooms.

It is unclear whether transplanting an organ from a donor who has SARS-CoV-2 could transmit the virus to the recipient, although Paschke said OPOs are testing organ donors for the virus. The American Society of Transplantation, in a draft guidance document, recommended testing for the virus in donors “whenever feasible.” It acknowledged such testing wouldn’t always be feasible for deceased-donor transplants “due to time constraints or logistical issues.”

DESPITE THE CHALLENGES the pandemic has introduced, transplant coordinators have worked hard to keep life-saving transplants coming. The U.S. transplant program appears to have fared better than programs in some other countries. For example, in April, as the United Kingdom battled the coronavirus outbreak, surgeons there performed only 99 organ transplants, the fewest in 36 years, the BBC reported.

In the United States, creativity and collaboration have proven essential.

Early in the pandemic, Kevin Cmunt at Gift of Hope heard constantly changing safety guidance. At first, the directions said not to wear a mask, but then hospitals required them for everyone. Gift of Hope staffers scoured the internet for masks, and some began to sew their own. Cmunt shared updates and ideas with other OPO directors through online chat rooms and forums. Early on, most OPOs only tested donors if they showed COVID-19 symptoms. But Cmunt said Gift of Hope began testing all donors for the coronavirus, following the lead of an OPO director in Seattle, an early epicenter of the viral outbreak.

Transplant centers also connected: Jennifer Milton, who runs the transplant center at University Health System in San Antonio, said she received a steady stream of information from Seattle and New York. A New York team warned that if a single member on a transplant team was infected, the entire transplant team could be quarantined. “We started hearing from them, ‘Keep your team apart,’” she said. “We were able to implement that in a day—24 hours.”

As Milton’s transplant workers dealt with the added pressure, several transplant recipients sent messages and cards to encourage them. One lung recipient had breakfast delivered for workers at her hospital.

Cmunt said the Gift of Hope staff holds virtual Friday cocktail hours and bingo nights to stay connected and share life updates and tips about homeschooling. “I’m really proud of them, that they’ve been able to continue to make donations happen under some trying circumstances,” he said.

IN MAY, AS STATES RELAXED lockdown orders and hospitals rescheduled more surgeries, transplant numbers started to get back on track, rising almost to pre-pandemic levels. Meanwhile, many patients like Michael Twitchell are still waiting for an organ, unsure how much the pandemic has affected their chances.

Michael Twitchell with his wife Debbie, daughter Laurel, and granddaughter Keilynn. Handout

When the coronavirus hit, Twitchell began wearing gloves and the N95 mask he bought for the Denver pollution. He also stopped leaving his apartment: “I’m so high risk I basically hide, and I let my family do all the shopping.”

But he said the pandemic is just one more thing he can’t control. He attends counseling to fight depression, and he participates in a grief group at his church. As a Christian, Twitchell finds encouragement reading the Bible.

“No one understands my disease. No one knows why I got it,” he said. “The trust and leaving it in God’s hands has been difficult. But you know, all you can do is keep believing and take one more step, one more day.”

—This story has been updated with current figures from the U.S. transplant program as of June 30. It was also updated to correctly identify Jennifer Milton’s hospital affiliation.

Kidneys to come

Eighty-six percent of people on the U.S. organ waitlist are awaiting a kidney, but U.S. doctors have performed 8 percent fewer kidney transplants this year compared with 2019. Because kidneys sometimes come from living donors (each person has two kidneys but can survive with only one), hospitals postponed hundreds of kidney transplants during the first few months of the pandemic. It was safer, they reasoned, to delay the surgeries for both donor and kidney recipient rather than risk the spread of the coronavirus.

Madj Louzini Handout

One such patient is 52-year-old Madj Louzini, who grew up in Paris, France, but moved to the United States 25 years ago. In 2007, a doctor discovered Louzini had developed Berger’s disease. The condition can cause the kidneys to lose their ability to filter blood.

Louzini led a normal life for another 12 years, running his transportation company in Charlotte, N.C. Then, last year, he became sick: He ached with cramps and was fatigued during the day. His doctor told him his kidneys were failing and he needed a transplant.

Louzini’s brother in France offered him a kidney, so Louzini returned to Paris. “When I went to see the doctor in January, he said, ‘You need to do dialysis or you’re going to die,’” Louzini said. He started dialysis treatments and began planning for a transplant surgery scheduled for April.

Then the coronavirus hit France. In mid-March, his surgeon called to say the transplant operation would have to be postponed.

Even worse, Louzini became sick with COVID-19 himself. Soon after starting dialysis, he developed a persistent cough and began waking up at night with his sheets soaked in sweat. He got diarrhea and could hardly walk: “After six weeks, I was dying, and really, really wanted to die.”

Louzini, still in Paris, has recovered from the virus but is still undergoing dialysis and awaiting a kidney. His doctor expects his transplant to occur by mid-July.