CORNWALL, Ontario – Kim MacLennan can remember standing in line at the license bureau, like we’ve all done, and recalls the clerk behind the counter asking a person about signing up for organ donation.
“The woman said ‘Do you want to participate in the donor program?’ and the customer said ‘I don’t see any use for that,'” recalls MacLennan. “I wanted so badly to say ‘I’m a use for that.'”
Indeed.
MacLennan, nearly two years ago, was the recipient of a liver transplant that saved her life. A massive cyst had taken over her liver and a life-saving surgical procedure saw the organ removed and replaced.
But like so many transplant patients, her story didn’t end there. Not by a longshot.
Depression and anxiety disorders appear during most transplant cases due to psychological stressors, medications and physiological disturbances. But that message is often lost on family and friends, who expect to see their loved one return with the vim and vigour they had before taking ill.
“One thing you’ve got to remember is transplants are not a cure. It’s a treatment. We’re all thankful for it because in many cases it saves our lives,” said MacLennan, who was approached by Seaway News for this story. “But each transplant is not the same as the next. They’re very unique to the person.”
And in MacLennan’s case the struggle is not over. Her new liver is too big for her body cavity, which puts pressure on her diaphragm, making it difficult for her to take a deep breath.
On top of that, doctors are confounded as to why her new organ could be on its way to developing NASH disease – a condition which may lead to cirrhosis and ultimately another date with the transplant team.
“It’s a different life. Life does go on, in the theoretical sense. But in the physical sense it’s a different life and it’s a struggle in many ways. Physically and mentally,” MacLennan said.
Mike Scott knows exactly what she is talking about.
It’s been about nine months since the Cornwall man had to undergo a heart transplant at the age of 37.
Not unlike MacLennan he would dearly love to return to work…but his condition prevents it.
“I seem to do well, then I’ll get sick (with a cold) and it’s right back to starting from the beginning,” said Scott, who initially shocked doctors at his healing ability.
He left the hospital just three weeks after the surgery, but now finds himself working every day to augment his strength while at the same time dealing with the frustration of not being able to do things he once took for granted.
“I’m lucky that I have people in the neighbourhood who will come over and do my driveway for me,” he said. “When I catch a cold, I’m in bed for a week.”
Online message boards are filled with reams of posts from individuals who are in the midst of post-op care following a transplant. Many also express concern about the psychological impact the procedure has had on their life.
Some have even wished for a return to life before surgery.
“I said that once,” said MacLennan. “It was just a moment of being sick and tired of feeling sick and tired.
“When people don’t understand it is difficult. No matter how much I try to talk about it…we feel isolated. We’re different. We have to watch the environment we’re in. I would so love to go back to work, but I can’t physically right now.
“When you are a transplant (patient)…you seem to somehow become part of a new community. And it’s with people who have gone through what you have. And those are my support unit.”
Scott said grappling with his new reality wasn’t necessarily something he had prepared for. Many transplant patients don’t know when their surgery will take place, and the results can be a whirlwind of elation at receiving the good news and being rushed to the operating room.
Things become real when the surgery is completed and the long road of recovery begins.
“They thought I might be back to work now,” said Scott. “But I can’t see it. I don’t want to go back when I’m not ready and ruin everything.
“It’s very stressful.”
MacLennan knows all about the stress…and the isolation.
“While you’re recuperating you have your get-well cards and stuff like that,” she said. “But when you’re in a moment of healing, all that is gone. People’s responses are ‘I’m waiting for you to call.’ What they don’t understand is what a transplant person goes through because they can’t be the one to initiate all the time. In my cases I’m tired all the time.
“And what do I talk about? My days are consisting of these walls.”
But neither MacLennan nor Scott are complaining, nor are they looking for a pity party.
It’s just reality.
“It’s so important that people register to be a donor because so many people are waiting,” said MacLennan. “And so many people don’t make it. They die.”
