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What Life Is Like Waiting for an Organ Transplant During the COVID-19 Pandemic

  • Organ donations and transplant procedures dropped during the COVID-19 pandemic, forcing many Americans waiting for an organ to wait even longer.
  • One man is waiting for a kidney donation even though he has a willing living donor.
  • Hospitals with organ transplant centers shortages of personal protective equipment (PPE), ventilators, and ICU beds.

In mid-March, when California’s stay-at-home orders went into effect, people around the state upended their lives in order to slow the spread of the novel coronavirus and protect those most at risk.

But for Jon, who has been on the kidney transplant waiting list since August of last year, that community protection has come at a price.

“With COVID-19, everything came to a screeching halt,” said Jon’s wife, Jammie. “The living donor transplant program has pretty much stopped.”

Jon and Jammie requested to only be identified by their first names.

Jon, who is 40 years old, was diagnosed in 2008 with IgA nephropathy, an inflammatory condition that can interfere with the kidney’s ability to filter waste from the blood.

Like many others, he and Jammie, who live in northern California, have had to adjust to the “new normal” of a pandemic world, but with the added stress of waiting for a lifesaving operation to happen.

“It’s kind of a balancing act,” said Jammie. “Obviously, we want to keep the donor and the doctors healthy and safe, but we need the transplant for life. How do you navigate that when the risks are so huge?”

Jammie and Jon are fortunate to have found a living donor — an “amazing friend” who responded to a request that the couple sent out after Jon’s doctors recommended him for a kidney transplant.

The friend started the kidney donor process in October and has completed the initial screening.

But when COVID-19 hit northern California, the living donor program shut down — before the friend could complete the cardiac screening, colonoscopy, and other necessary tests.

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Jon and his family are hoping he will be able to get a kidney transplant soon.

Decline in organ donations during the pandemic

Jammie and Jon are not alone in waiting for an organ transplant.

In a recent letter in The Lancet, a group of doctors raised concerns about a steep decline during the pandemic in organ donations and transplant procedures in France and the United States.

In the United States, the number of recovered organs dropped by about 50 percent from early March to early April. The number of transplanted kidneys fell by about the same amount.

Dr. Silas P. Norman, an associate professor of internal medicine and director of the transplant ambulatory care unit at the University of Michigan, says it’s always concerning when there is a drop in organs available for transplant, but the decrease during the pandemic is particularly concerning.

“We know that everybody on the transplant waiting list is at an increased risk of mortality,” said Norman, who is a member of the American Kidney Fund’s board of trustees. “So any delay or decrease in access for those patients can really be a life or death matter.”

So far, Jon’s doctors have been able to maintain his kidney function by adjusting his medications, without the need for dialysis.

However, some people with kidney failure have to visit a dialysis center three or four times a week. Norman says these centers have historically done a good job of infection control, but every time a person leaves the house, they risk being exposed to the coronavirus while traveling.

“Many of our [dialysis] patients don’t have the option to just be at home,” said Norman. “They’re going to be exposed to a number of people repeatedly during the week, so their risk (of COVID-19) is increased.”

Dr. Lewis Teperman, director of organ transplantation at Northwell Health in Manhasset, New York, says organ donation was an “expected casualty” of the pandemic.

Part of the reason, he says, is because people in states with stay-at-home orders were less likely to be involved in car, motorcycle, swimming, and other accidents. So there were fewer trauma-related deaths that led to organ donation.

Hospitals with organ transplant centers also faced other difficulties, especially in hot zones — shortages of personal protective equipment (PPE), ventilators and ICU beds, and healthcare staff reallocated to help fight COVID-19.

Even living donor programs were affected by the pandemic.

“There are people who are motivated to donate [an organ],” said Norman. “But they may have looked at the current COVID-19 situation and thought, ‘Well, I’m not going to go to a transplant center right now to be evaluated.’”

Waiting for an organ during COVID-19

Jammie admits that when the novel coronavirus first showed up in the United States, she wasn’t overly concerned about it. But once she did a little research, she realized what was at stake.

“We were super aware that a common cold could be life or death for Jon,” she said. “Then you get something (like coronavirus) that can affect your kidneys — and his kidneys were barely working anyway.”

So the stay-at-home order, along with people practicing physical distancing and wearing masks in public, brought some relief for the couple.

“We felt like we were protected and safe,” Jammie said, “and that the community was taking care of us by everybody doing the same thing.”

Jammie has also come to appreciate the ease with which she can safely get food and supplies.

When she orders groceries online, she specifies that someone in the house is “immunocompromised.” The bags are left outside, and she can wipe them down before bringing them into the house.

But there are downsides to staying at home all the time. Some of these are ones felt by many other American families during the pandemic.

“We have kids,” said Jammie. “What do you do when you have athletes who all of a sudden can’t exercise? And they’re teens, so they want to hang out with their friends.”

Teperman expects a large number of transplant programs in the United States to start running again soon. But Norman says it could take several months for them to ramp back up — and keep people safe at the same time.

They both expect COVID-19 to change how transplant programs are run. Donors and recipients will need to be tested in real-time for the coronavirus before a transplant can happen.

Teperman says a recipient’s post-transplant care also needs to be taken into account because they are at higher risk for COVID-19 as a result of the immunosuppressive drugs they take after surgery.

“How are patients going to be sequestered at home to recover?” he said. “And if a recipient does come down with COVID-19, who’s going to take care of them and will they have the proper PPE?”

Norman says that while COVID-19 has had a big impact on organ donations and transplant procedures, the path to transplant is often bumpy.

“A lot of our patients are used to the idea that being on the waiting list to get a transplant often has lots of ups and downs,” said Norman.

“We reinforce to our patients that this is one of those challenging situations that we will work through as a team, with an eye toward getting people transplanted.”

Jammie says the lifting of the pandemic restrictions brings some added anxiety about Jon being exposed to the coronavirus. But they are thankful that the process will move forward soon.

“We just want Jon to be healthy,” she said, “so our kids can grow up and have their dad around, and for him to be able to participate in their lives.”

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  • Posted on June 1, 2020