Before receiving a life-saving kidney transplant earlier this year, Nina Young felt like she was a “time bomb, just ready to explode.”
For eight years, Young relied on weekly dialysis treatments to stay alive amid her lifelong battle with polycystic kidney disease (PKD), a genetic disorder that causes numerous cysts to grow on a patient’s kidneys, ultimately enlarging them and often leading to kidney failure.
As Young relied on dialysis for so long, by last fall she was down to the last viable site on her body where dialysis could be performed, with dialysis lines typically lasting only a year before failing.
“They said my line was already at a year, and that was my last one,” she said. “They don't normally work past the year.”
Without dialysis or a kidney transplant, Young faced the possibility of death each time she visited the hospital for treatment, as each appointment threatened to be the time where her final dialysis line failed to work.
Meanwhile, her hopes for a kidney transplant were in peril, as she experienced depression and seizures due to issues with medication she was taking — leading to concern about whether a transplant would be a successful operation for Young.
“The transplant committee was concerned that (medication) could cause a major problem in depression after a transplant was done, because of the different types of drugs that you have to go on,” she recalled.
Due to these concerns, Young was not put on the transplant list last year, and she said she “lost hope” at that time.
“I started planning my funeral. By December, I had all my funeral arrangements arranged, from the church I was going to have my funeral in, to my burial plot, and everything — right down to my little last song,” she said.
However, over the next few months, Young’s dialysis line held on, and she also managed to find help for the depression she experienced, crediting the positivity of medical staff at Orillia Soldiers’ Memorial Hospital, her church community, and the mental health professionals she saw through that time.
“The nurses at Orillia Soldiers’, they were excellent in just continuing to push me, in a good way, to try to uplift my spirit,” she said. “I will be forever thankful to them.”
Ultimately, work to put Young on the transplant list resumed, although she had doubts that she would receive a transplant before her final dialysis line failed, noting it can take years to get a transplant after being added to the list.
“On March 14, I ended up going down to Toronto to see the transplant coordinator, and he told me that I now met all the requirements (and) everything was completely in line with what was needed,” she said.
Although she was happy to hear the news, Young doubted she would live until she made it to the top of the transplant list.
“In my mind, I was thinking, ‘Thank you. I appreciate it, but I'm not going to make it 8-10 years. I may not even make it past this month,’” she said. “I said to him, ‘OK, so what's next?’ And he said, ‘Well, go home and pack your bags.’”
Because of her years spent on dialysis and the severity of her current situation, Young said she had been bumped to the top of the list.
Within two weeks, she received the call for the transplant, packed her bags, and was ready to go — only to get another calling cancelling the procedure as the kidney was no longer viable.
“I was feeling quite distressed. I just cried in the car, but then all of a sudden, there was a voice inside, and it said to me, ‘Wait a minute. You got the call,’" she said. “If you got one call, there's another one just waiting around the corner.”
Sure enough, the real call came a few weeks later, and by April Young was the backup recipient for a kidney — meaning she would receive a new kidney if anything went wrong with the primary recipient for the operation.
While in Toronto for the operation, Young learned that she was no longer the backup for the new kidney, as circumstances changed with the primary recipient.
“I was in shock,” she said. “I prayed (for) the person that couldn't get it, the primary, because I know what they had been going through, and although I didn't know them it broke my heart.”
Within a day, Young underwent surgery, and she recalled the excitement of watching doctors examine the kidney prior to the transplant.
“That's when reality completely hit me: ‘Oh, my goodness. That's mine. That's my kidney.’”
The operation came just in time: Young said her final dialysis treatment before the operation was the last time that her line would have worked.
Although there have been a variety of new medications and appointments in the months since her transplant, Young said she is “definitely on the road to recovery and feeling really good.”
Young has has spent many years as an advocate for PKD awareness, spearheading and participating in initiatives to raise awareness and research for the disease both locally and beyond.
Before moving to Orillia, she founded the Cornerbrook, Newfoundland chapter of PKD Foundation of Canada — the only nationwide charity dedicated to promoting research, education, and support for those living with PKD.
After participating in a flag raising ceremony at the Orillia Opera House last September, Young assumed it would be her last year advocating for awareness and research into the disease.
“It is one of those things that is almost surreal. Here I am, coming up to the same date, and I've got a kidney and I can spread the word,” she said. “I can do even more now for the foundation and to raise that awareness.”
This year’s flag raising will take place on Sept. 3 at 11 a.m., with Young encouraging community members to come out in support.
Young will also be participating in the Walk to End PKD in Toronto on Sept. 29, and she encourages residents to donate to the cause in support of research into various PKD treatments. Those interested in donating may do so here.
Given her new lease on life, Young said she plans to start schooling to become a social worker.
“I want to be able to help people, to give them hope,” she said. “If it could happen to me, it can happen to you, and (I want to) work through things with people. Emotionally, mentally, physically, it’s a whole package.”
