She Died With Long Covid. Should Her Organs Have Been Donated?

Covid-19 ravaged Heidi Ferrer’s body and soul for over a year, and in May the “Dawson’s Creek” screenwriter killed herself in Los Angeles. She had lost all hope.

“I’m so sorry,” she said in a goodbye video to her husband and son. “I would never do this if I was well. Please understand. Please forgive me.”

Her husband, Nick Guthe, a writer and director, wanted to donate her body to science. But the hospital said it was not his decision to make because Ms. Ferrer, 50, had signed up to be an organ donor. So specialists recovered several organs from the body before disconnecting her from a ventilator.

Mr. Guthe worried that following his wife’s lengthy illness, her organs may not have been safe to donate to other patients. “I thought that they would kill the people they gave these organs to,” he said in an interview.

The case highlights an urgent debate among medical professionals about whether the organs of people who survived Covid, and even of those who died with the illness, are really safe and healthy enough to be transplanted.

Potential donors are routinely screened now for coronavirus infections before their organs are removed. Generally, the organs are considered safe for transplantation if the test is negative, even if the donor has recovered from Covid. But there is no universally accepted set of recommendations regarding when organs can be safely recovered from virus-positive bodies and transplanted to patients in need.

Complicating the question is the fact that people with long Covid, whose debilitating symptoms may persist for months, mostly do not test positive for the infection. Some researchers fear the virus may be present nonetheless, hiding in so-called reservoirs within the body — including some of the very organs given to transplant patients.

The risk is that surgeons may “give the patient Covid, along with the organ,” said Dr. Zijian Chen, medical director of the Center for Post-Covid Care at the Mount Sinai Health System. “It’s a tough ethical question. If the patient assumes the risk, should we do it?”

Disease transmission is always a concern when organs are transplanted, but there is tremendous demand for lifesaving organs in the United States and a limited supply. More than 100,000 people are on waiting lists, and 17 people die each day while they wait.

In recent years, rules for accepting organs from deceased donors who may have infections like H.I.V. or hepatitis C have been relaxed.

Organ recovery practices vary widely from one center and region to the next, influenced by local availability of donor organs. There is pressure on procurement centers to keep their numbers up, and transplant centers must perform a certain number of procedures each year to maintain certification.

When Covid initially started spreading in the United States, the approach toward organ recovery was very conservative. But that is changing.

“At the beginning of the pandemic, if you were positive, you just weren’t going to be a donor. We didn’t know enough about the disease,” said Dr. Glen Franklin, medical adviser to the Association of Organ Procurement Organizations.

Now, however, the country’s major organ transplant organizations have taken varying approaches.

Generally, surgeons have avoided transplanting the lungs of patients who died of Covid, because it is a respiratory illness that can cause long-term lung damage.

A woman was infected with the coronavirus last year after receiving the lungs of a donor who had tested negative for the virus after a nasal swab, according to a case report published in the American Journal of Transplantation.

A few similar cases were reported, and now additional tests are conducted on samples of tissues taken from the lower respiratory tracts of potential lung donors; the transplant proceeds only if all the tests are negative for the infection.

But other organs may also be affected by the disease. Scientists in Germany performed autopsies on the bodies of 27 patients who died of Covid and found the virus in the kidney and heart tissues of more than 60 percent of the decedents. The researchers also found the infection in lung, liver and brain tissue.

Nonetheless, abdominal organs below the diaphragm, like kidneys or livers, are recovered for transplantation even if donors test positive for the virus, so long as they were asymptomatic, said Dr. Franklin, of the organ procurement association.

Dr. David Klassen, chief medical officer at the United Network for Organ Sharing, which administers the nation’s organ procurement network, said decisions must be made on a “case by case” basis.

“It is really a risk-benefit calculation,” he said. “Many people waiting for organs are deathly ill. Their life span may be down to a few days. If they don’t get a transplant, they will not survive.”

Physicians with yet another group, the American Society of Transplantation, said they would not procure any organs from any patient who had shown signs of illness and had a positive test for the infection.

“If somebody has active Covid and they’re testing positive, we would not procure organs from that donor, none at all,” said Dr. Deepali Kumar, president-elect of the society.

If a deceased donor may have had long Covid and tested negative for Covid, however, the organs would be taken, Dr. Kumar said: “If we start turning down everyone who has had Covid in the past, we’d be turning down a lot of organs.”

A recently updated report, by a committee of the Organ Procurement and Transplantation Network, summarized the evidence about organ recovery from donors with a history of Covid. The authors emphasized the dearth of information about the long-term outcomes for recipients.

The document examines the recovery of organs from deceased donors who test positive for the coronavirus, from deceased donors who survived Covid-19 and test negative, and from living donors who survived Covid.

In all of these instances, the report said, the long-term outcomes for the recipients — and living donors, in some cases — are “unknown.”

Transplantation of organs from donors who test positive for the coronavirus “should proceed with caution,” the authors warned.

The report also noted that the Delta variant — which now accounts for almost all infections in the United States — is more infectious than previous versions of the virus, and so the duration of infectivity “has not been comprehensively assessed.”

The report makes no mention of long Covid. Doctors who specialize in the care of these patients say that even though they report a wide range of persistent symptoms, the vast majority appear to have normally functioning organs.

“For people who did have end-organ damage as a result of Covid, we have ways of detecting that,” said Dr. Jennifer D. Possick, an associate professor at the Yale School of Medicine, who runs a long Covid recovery clinic at Yale New Haven Hospital.

But organ function tests aren’t perfect, she cautioned. “We’re only as good as our existing tests,” she said. “This is sort of uncharted territory.”

Dr. Chen, of the Mount Sinai Health System, agreed that the organs from long Covid patients usually perform normally on tests of function, but said that recipients should be informed of the risks.

One concern is that patients who receive transplanted organs are usually required to take medications that suppress the immune system to prevent rejection of the organs.

“If they get Covid, they’ll be susceptible to infections and poor healing,” Dr. Chen said. “I think, ethically, you need to let the patient know the risk is very real.”

Before she died, Ms. Ferrer chronicled her ordeal in meticulous notes left on her phone: “Covid toes” that made her feet so sore she could not walk. A tremor that made her body shake violently. Pain in every limb. Relentless insomnia and despair.

Her heart raced. Her blood sugar levels fluctuated. Worst of all, she couldn’t think straight.

The hospital thought she would be a suitable donor anyway.

“I tried to explain that ‘long haul’ and Covid are not the same things,” said Mr. Guthe, her husband. “People get Covid and get better. This affected every system in her body.”

Two California men with end-stage kidney disease received her kidneys, he said. No matches were found for her other organs. Her liver was severely compromised, as Mr. Guthe had warned the hospital, because she had been treating herself with large doses of ivermectin, an antiparasitic drug falsely said to cure long Covid, and an alternative diet that included nearly two-thirds of a cup of olive oil each day.

For Mr. Guthe, his son and other family members and friends, the five-day wait until the hospital disconnected Ms. Ferrer from the ventilator was excruciating. Mr. Guthe said he had promised her that he would educate people about the burden of long Covid.

Now he has another mission.

“Heidi was a very giving person, but she would not have wanted this,” he said. “We need to create guidelines for what is safe and what isn’t.”