Saskatchewan

'It's such a gift to give': Regina nurse in desperate need of life-saving liver transplant

Regina nurse Krystal Graham, 37, would give anything to be caring for others inside a hospital right now. Instead, a rare genetic disease has her desperately hoping for a life-saving liver transplant, and for the second time.

Krystal Graham requires a second liver transplant because of rare genetic disease

At 37 years old, Krystal Graham is waiting for her second liver transplant because of a rare liver disease called primary sclerosing cholangitis. (Kirk Fraser/CBC News)

Krystal Graham would give anything to be caring for other people inside a Regina hospital right now, even in the midst of a global pandemic. 

Instead, the 37-year-old licensed practical nurse is bedridden much of the day as she waits for a liver transplant.

Her fate depends on a stranger's willingness to donate their liver after death. It happens more frequently now than it did a decade ago, but it's still not common enough.

Graham knows the drill. She had her first liver transplant 13 years ago.

"It's overwhelming," she said. "I know recovery is very hard, but I will get a chance to lead a normal life again."

WATCH | Krystal Graham is waiting for her second liver transplant in 13 years 

A Regina nurse is waiting for a life-saving liver transplant, her second in 13 years

5 months ago
Duration 5:11
Krystal Graham was diagnosed with a rare liver disease when she was 9-years-old and is now waiting for her second new liver 5:11

Genes working against her

In 1993, at nine years old, Graham started having intense stomach pain. Doctors in Saskatchewan could not figure out the problem. Eventually, specialists at SickKids Hospital in Toronto diagnosed her with primary sclerosing cholangitis (PSC), a rare liver disease that attacks the bile ducts of the liver. 

In many cases, PSC leads to liver failure after 10 to 15 years. 

Medication allowed Graham to live a fairly normal childhood, but by 15 she began to have trouble with her bowels. This led to another diagnosis, ulcerative colitis. 

Things kept getting worse.

"I had lots of pain, so I was in bed all the time. I could barely eat any food. I had no energy. I just couldn't lead a normal life anymore," she said.

Graham was put on the transplant list in 2007. She was 23.

Krystal Graham received her first liver transplant at 23 years old, in November 2008, at University of Alberta Hospital in Edmonton. (Submitted by Krystal Graham)

Graham travelled to the University of Alberta Hospital in Edmonton in July 2008. After having one transplant cancelled, she finally had the procedure on Nov. 19. 

"When we finally got the news that there was a liver available it was such a good feeling."

The time she spent waiting in hospital was hard on Graham's body.

"Lots of pain. My spleen started dying off. My colitis got really bad. They wanted to take my colon out at one point," she said. "I needed blood transfusions because I wasn't producing blood anymore."

The transplant didn't go as smoothly as the team hoped, especially in the first 24 hours. The anti-rejection medication caused seizures and a lesion on Graham's brain. She also required surgery three days later because her abdomen was filling up with blood and fluid. 

"It was a lot for my family to take in," she said.

People wouldn't have to get so sick if there were more organs to go around, said Graham. Her recovery was challenging because her body had deteriorated so much before she received a new liver. (Submitted by Krystal Graham)

Graham stayed in ICU for another week, then the transplant unit for another two weeks, then remained in hospital for months. A month after leaving she went through a major rejection and ended up back in Edmonton. 

"It was just really, really hard, the recovery process, because I was so sick before."

Graham finally started feeling normal a year after the transplant. She took advantage of her newfound energy to go back to school and became a licensed practicing nurse (LPN).

"I didn't initially want anything to do with the hospital," she said. "But as things got better for me, I love helping people … and I love my job."

Even though she was tired of all her time spent in hospital, Graham went on to become a licensed practicing nurse (LPN) after her transplant. (Submitted by Krystal Graham)

Round 2

Doctors warned Graham the PSC could come back. No one knew when. 

In 2015, doctors performed a biopsy on her new liver and discovered the disease was back. They adjusted her medication and Graham continued to live a mostly-normal life.

Things changed in March 2020. 

As the rest of the world was coming to terms with the first wave of the COVID-19 pandemic, Graham's doctors pulled her out of the neuro and cardiac wards where she works. In late May 2020, new symptoms flared.

She started having an incurable itch on her hands and feet. Further investigation by doctors soon revealed the PSC was affecting the small ducts of her new liver. 

She started plasmapheresis treatments in September 2020. The procedure is similar to dialysis. Unhealthy plasma is swapped for the healthy kind or a plasma substitute. 

The treatment helped with the itch, but the liver disease brought other issues: nausea, stomach pain, GI issues and variceal bleeding. Varices are abnormally dilated veins that can rupture, in some cases bringing a high risk of death. 

Doctors started treating Graham with plasmapheresis — similar to dialysis — to combat the incurable itching on her hands and feet. (Submitted by Krystal Graham)

In spring, Graham's first variceal bleed was in her esophagus. In July, there was one in her stomach. 

"You don't really know that they are happening. There's no warning sign," she said.

A bleed usually means she needs one or two blood transfusions, but the one in her stomach was so serious she needed four blood transfusions, an iron transfusion, antibiotics and spent a week in the hospital. 

"It's just getting more and more challenging as the liver disease gets worse."

Graham was sent back to Edmonton a few weeks ago. She is back on the transplant list.

Because this is Graham's second transplant, there are new risks, including more scar tissue and complications related to her illness with the first transplant.

"I know that things can happen, but I can't dwell on it," She said. "I'd rather stay in the mentality that things will be OK and I'll get through this again."

Staying positive

Graham was able to quarantine with her sister's family through the pandemic. She credits them, especially her young nieces, with keeping her spirits up. 

"They totally get my mind off things and bring things back to reality and happiness. They don't know that you're sick, so they still treat you like everything is fine."

Graham credits her young nieces for helping her stay positive while she waits for her second transplant. (Submitted by Krystal Graham)

Keeping routines as normal as she can is very important, even though she's off work.

"I get up every morning and still get ready," she said. "Am I in bed in the afternoons a lot of the time? Yes. But I still get up and get ready and that just makes me feel like I'm still me."

Daunting statistics

The statistics on organ donors are frustrating for people like Graham.

"The first time around it was different because I didn't know what to expect," Graham said. "This time around, there's just not enough donors."

Graham said she wishes more people would just consider it, or at least start the conversation within their family.

"So many people have to get so sick to receive a transplant. With more donors, it would just be nice to know you don't have to get that sick."

According to the latest available data from the Canadian Organ Replacement Register, more than 4,300 people in Canada were waiting for organ transplants as of Dec. 31, 2019. That same year, 3,014 transplant procedures were performed across the country, an increase of 42 per cent since 2010. 

The number of people choosing to donate their organs has also gone up 42 per cent in the last decade, but it's still not enough to keep up with demand. In 2019, 249 people died waiting for a transplant. 

Saskatchewan's Organ and Tissue Donor Registry, which allows people to register their intention to donate, was launched on Sept. 3, 2020. The Ministry of Health said about 16,000 people have done so to date. 

The ministry said there has been a significant increase in organ donations in the province. In 2016-17 there were 14 deceased organ donors. In 2020-21, there were 26. 

Only kidney and corneal transplantations are performed in Saskatchewan, which means patients like Graham who require any other kind must travel to another province. 

In Alberta, where Graham received her liver, there were 395 total organ transplants performed last year. Eighty of those were livers. 

"I don't think people realize how long some people have to wait and how sick they have to get just because there's not enough [organs] to go around," Graham said.

Graham's family has been her biggest support through her journey with primary sclerosing cholangitis, liver failure, her first transplant and now this second fight. (Submitted by Krystal Graham)

She has had the conversation with her family.

"Everyone knows everyone's wishes," she said. "I just think it's so important. It gave my family a chance to have me back once, and now for a second time. It's such a gift to give."

Race against time

Graham is reluctant to say she is worried about time. 

But testing shows her need is urgent. A new liver in the next three months would be ideal. 

There are complicating factors. She has a rare blood type, B–, making it more difficult to find a match. She also needs an entire liver that is small enough to fit inside her.

"There's no guarantee because there's potentially not enough livers," she said.

Graham said she has spoken with her family about their organ donation wishes. Her hope is they can give back the gift she's been given. (Submitted by Krystal Graham)

All things considered, Graham said she's not even giving the alternative a thought. The only option is to get better. 

Now all she can do is wait and hope. 

"I try to stay as positive as I can. I need that for my mental health," she said.

ABOUT THE AUTHOR

Sam Maciag

Host, CBC Saskatchewan News at 6

Sam Maciag is the host of CBC Saskatchewan News at 6. She's been working as a journalist for more than a decade in Regina. Catch the show weeknights at 6! Have a story idea? Email sam.maciag@cbc.ca. You can also follow her on social media: @sammaciag.

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