Kidney recipients carry ‘invisible risk’

Anxious transplant patients grapple with fear of contracting COVID-19 at this stage of pandemic

At the end of 2019, just weeks before Canada announced its first case of COVID-19, Nancy Tran got what she calls her second chance at life.

She received a new kidney — a perfect match from her youngest brother. And Tran, a single mother of two who spent more than 20 years living with kidney disease and months on dialysis, was grateful to finally feel well, the constant fear and fatigue that had plagued her blissfully gone.

But then COVID swept in and Tran’s second chance at life became tenuous. The anti-rejection drugs she and other transplant patients must take put her at high risk of getting sick and dying from COVID. So she stayed home and stayed away from the places and people she loved.

Still, despite her caution, constant masking and getting three doses of vaccine, Omicron tracked her down. Tran spent almost a week in hospital in January, struggling to breathe, her COVID risk becoming terrifyingly real.

Now, she is trying to navigate a tricky pandemic stretch. With masks dropping and crowds returning, Tran worries — like so many people with compromised immune systems — whether she can keep herself safe.

“The risk I carry, it’s invisible,” she said. “When people look at me, they see a perfectly healthy woman who can do almost anything a normal person can do. It’s not like having a broken leg; they can’t see that I’m hurting and struggling.”

Protected by vaccines, prior immunity or both, many people have spent this third pandemic spring easing back into the world, their initial terror of COVID receding. But those who are immunocompromised — some 14 per cent of Canadians, according to a 2020 Statistics Canada survey — remain wary of the virus.

For transplant recipients who have already faced death while waiting for a new organ, the fear of getting sick with COVID hasn’t waned. Some say their anxiety has even increased, as pandemic protections around them have dropped.

“It’s really hard to tell a transplant patient they have to live with the virus, because they just can’t,” said Dr. Darren Yuen, a transplant nephrologist at St. Michael’s Hospital, a part of Unity Health Toronto.

“When one of my patients gets COVID, I still don’t know how much they’ll be affected. I have no way of predicting, even if they have three or four doses of the vaccine, whether or not they’re going to be fine.”

Transplant patients, many of whom have chronic health conditions, are at a higher risk of severe COVID disease and death. The anti-rejection drugs they must take suppress their immune system and hamper their body from fighting off the virus. Vaccines help — especially third and fourth doses — but they’re still not enough to trigger a strong immune response in most patients.

Yuen said in the first pandemic year at St. Mike’s, before vaccines were available, about one in five kidney transplant patients who caught COVID died.

“It was heartbreaking. We’ve known some of these patients for years … you get to know them, and you see that they are managing fine. Then COVID hits and then they’re gone.”

The transplant community hoped the arrival of COVID therapies, including monoclonal antibodies and the antiviral Paxlovid, would offer them a safer path out of the pandemic. But Yuen said they have so far come with challenges.

Last fall, the monoclonal antibody sotrovimab was available to immunocompromised patients who tested positive. But Yuen said data suggests the drug, a one-time intravenous infusion, doesn’t work as well against Omicron, especially its subvariants, and is no longer recommended.

Remdesivir, an antiviral medication, has since become the first-line treatment option for some transplant patients. But Yuen said during the spring COVID surge, he sometimes struggled to get his patients into one of the specialized clinics within the recommended seven-day window.

And while Paxlovid, an oral antiviral authorized by Health Canada in January, is available to adults with compromised immune systems, Yuen said the drug can interact dangerously with anti-rejection medications, making it difficult to offer to transplant patients.

Though the St. Mike’s kidney transplant program is the second largest in Canada, following about 1,800 patients in its post-transplant clinic, its doctors have prescribed Paxlovid only a handful of times.

“There still aren’t a lot of good options for my patients,” Yuen said, adding the COVID-prevention drug Evusheld, approved by Health Canada in April, may offer some hope, though more evidence is needed to determine how well it will work for kidney recipients.

“It really feels like my transplant patients have been left behind.” Krista Tambakis lives with that sinking feeling every day.

Her father, Nicolas Tambakis, a transplant recipient who lived with his new kidney for 15 years, died of COVID in February. The 74-yearold was taken to hospital by ambulance from his Scarborough home on Jan. 17 — the same day Krista had booked him for his fourth COVID vaccine.

The family doesn’t know where Nicolas, a retired construction company truck driver, got infected. He and his wife, Georgia, rarely left their home except for brief trips to the bank or grocery store, and they always wore their masks.

“We took every possible precaution against COVID, and we still got the short end of the stick,” said Krista.

Nicolas, who had kidney disease for much of his adult life and had been going for dialysis three evenings a week after work, was grateful following his transplant. Krista said he worked hard to ensure he and his kidney stayed healthy and was always careful about infections, even more so when COVID hit.

Krista wonders whether that fourth vaccine would have given her father any more protection. Or if Paxlovid or another COVID therapy might have helped. She knows the doctors and nurses who cared for her father at Scarborough Health Network’s Centenary Hospital did all they could during his three-week stay.

“They tried everything; I know they did,” she said, explaining her dad was on a ventilator for two weeks, but ultimately died from multi-organ failure due to COVID.

She hopes telling her family’s story will ensure those who succumbed to COVID aren’t forgotten, and that people understand collective measures are still needed to shield those most at risk from the virus.

“A lot of people are putting the pandemic behind them, but unfortunately this community cannot do that. There are a lot of vulnerable people who still need protection.”

In his role as kidney transplant nurse co-ordinator at St. Mike’s post-transplant clinic, Galo Meliton has listened to a lot of fear-filled voices. The registered nurse has spoken with hundreds of transplant patients during the pandemic. With each new variant, the number of phone calls to the clinic surges again.

“Our patients are still scared, and they have been since day one,” said Meliton. “They’re asking: What’s going on? What do I do now? How can I protect myself? Is it safe to go out?

“They know the nature of their immune system. They know they are not able to fight infections like an ordinary person. Just like the fear of (organ) rejection, the fear of infection is always there, lingering in the background.”

Meliton recalls, his voice shaking with emotion, the early days of the pandemic when patients called to say they were sick with COVID and asked whether they should go to hospital. Later, he would learn many of those patients died.

“I’ll never forget them; their voices are embedded in my head.”

Sharon Lee, a registered social worker at the St. Mike’s kidney transplant clinic, has also had her share of tough conversations while guiding patients through the pandemic. Some need help calculating their risk while navigating the everchanging COVID landscape. Others struggle with ongoing isolation and require mental-health support.

Lee, who has more than 20 years’ experience, said the seclusion and loneliness have been detrimental for some patients, particularly seniors.

Many transplant patients need financial advice and income supports, something that has escalated as the pandemic evolved, said Lee, noting some patients lost their jobs or were forced to quit or retire early because of COVID fears.

“I’ve had quite a few patients saying: ‘I’ve cut back on my transplant medications; I thought I could save money,’ ” she said. “Some have taken out lines of credit to pay for the medications or borrowed against their credit cards. Only then do we find out patients are on a real tightrope trying to afford basic life necessities.

“We try to work with them and help them; some can’t advocate on their own.”

This is one of the reasons why Tran is speaking up about her COVID experience.

While she has a steady job with health benefits, a boss who has encouraged her to work safely at home, and a network of friends and close-knit family, she knows there are many transplant patients who don’t have any of those things. Even with her supports, the virus found her and made her dangerously sick.

Tran wants people to know that Omicron isn’t necessarily mild, especially for those who are vulnerable — that wearing a mask and being cautious remains necessary for her and other transplant patients, and that their needs must not be dismissed.

“I carry this invisible risk. But transplant patients, we aren’t invisible.”

‘‘ It’s really hard to tell a transplant patient they have to live with the virus, because they just can’t.

DR. DARREN YUEN

ST. MICHAEL’S HOSPITAL