With stakes high, Regina woman waiting for transplant says pause in organ donation program is frightening

"It was like you got punched in the gut type of feeling," Krystal Graham says of learning that Saskatchewan's organ donation program would be temporarily suspended.

The province's decision to pause the program came earlier this week, amid a surge in COVID-19 cases that is straining hospital resources.

Most procedures will be paused indefinitely, the province confirmed during a press conference on Thursday.

Graham is awaiting a second liver transplant after a rare genetic liver disease called primary sclerosing cholangitis attacked her first transplant, which she got at age 24 for the same reason. 

Now 37, the stakes are high for the Regina woman.

Her health is quickly declining, and doctors tell her that if she doesn't get another transplant in the next few months, her chance of survival falls to 50 per cent. 

"I'm scared.… I wasn't really scared before because I've been through a transplant before," she said. "And now I just feel a little bit stressed about it, because there's nothing I can do about it."

Getting someone a new lung so they can breathe or a new kidney … is not an elective procedure.- Dr. Hassan Masri, ICU physician

Graham takes dozens of pills each day to address the accumulating conditions caused by her failing liver — she's fatigued, losing hair, her body isn't absorbing nutrients, and she goes for blood plasma treatments at the hospital three times a week.

She expects a transplant would address these conditions, but her genetic disease could still come back and attack her second liver. 

Even without the program suspension, Graham would be fighting an uphill battle. Her blood type, B-negative, and the size of the liver she needs already make finding a match difficult. 

"It's hard going through a transplant, period, but then to have things stacked up against you, and know you have a time frame, is a lot to think about."

Inside the ICU

The donation program's indefinite halt is the latest in a growing list of services interrupted by the burden COVID-19 has put on hospitals.

It's frustrating for people who know the value of the program.

Dr. Hassan Masri, an associate professor of medicine at the University of Saskatchewan and an intensive care unit physician in Saskatoon, said people waiting for weeks, months or years might be "robbed" of an organ match because of the suspension.

There are no other options for those waiting for a donation, he said.

"We're not talking about elective things. Getting someone a new lung so they can breathe or a new kidney … is not an elective procedure," Masri said.

"We really need to understand that unless we get COVID-19 under control, the worst is still yet to come and many of these direly needed services will not resume and will be stopped."

Masri is passionate about the work he does with organ donors, which can save lives. Despite that, he said hospitals and doctors had no choice but to suspend the donation program.

But that could have been prevented with a stronger government response to the COVID-19 pandemic, he told CBC.

"[The province] did not act fast enough, proactively, thoughtfully and based on science to prevent this fourth wave from going out of control."

Masri emphasized the importance of COVID-19 vaccination in reducing the load on ICUs.

People can die from COVID-19, but others can die without access to medical resources, he said.

"The personal poor choices that some people are making are going to impact other people … not only those folks who are not receiving their vaccine."

Understanding the impact

Natasha Minakakis's daughter, Demi, received a kidney transplant on April 28, just shy of her second birthday.

Asked how she felt about the donation program's suspension, Minakakis said she would do her best to answer without getting emotional. 

"I know that not everybody has a Demi in their life to make it personal, but for me it's really personal," she said. 

Demi was supposed to get a transplant in December, but that was postponed when transplants were suspended at that point.

When they finally resumed, Demi and her live donor — Minakakis's husband, Cody Pearson — had to go through a lot "invasive testing," she said.

"My heart really goes out to these families."

People do die waiting for an organ transplant.- Joyce Van Deurzen, Kidney Foundation of Canada

There were 79 people waiting for a single transplant in Saskatchewan at the end of 2020, according to the Canadian Organ Replacement Register. Two people died while waiting.

"What many people don't realize is that one [or] two per cent of all deaths qualify to be organ donors," said Joyce Van Deurzen, executive director of The Kidney Foundation of Canada.

The loss of any one of those organs is "devastating," she said.

"This isn't like 'Oh well, we have to wait a bit longer.' People do die waiting for an organ transplant."

Graham said she's staying positive, hoping this postponement doesn't last too long. 

She's asking that people get vaccinated to alleviate stress on hospitals, and allow services like the donation program to resume.