April is organ transplant awareness month in British Columbia, a time of year when BC Transplant redoubles its efforts to convey how a simple decision on one person’s part can have life-saving impact on others.
While the focus is usually on increasing the number of people who register as organ donors in the event of death, gifts from living donors are also possible in some cases. This coming April will be a time of heightened awareness and gratitude for the Levy family, who will be celebrating the 10-year anniversary of a living donor kidney transplant between siblings Barb and Michael on March 29.
The anniversary coming in the midst of the COVID-19 crisis offers some interesting parallels for the Levys. In 2010 Michael was being forced to dramatically change his way of life, slow down and stay away from people.
“It’s very reminiscent of 10 years ago. I was in the hospital in Vancouver and Barb was recovering at home with Mom. People were bringing pre-made meals and coming to do the recycling and the garbage. It’s really interesting because it’s spring. It’s the same time of year. It’s actually nice to shut down a bit in terms of interactions, but go outside and enjoy the natural environment.”
“We’re just extremely fortunate to be here on the island where nature is so accessible. It just helps everybody to calm their nerves,” Barb added.
While everyone in the community is learning how to adapt to a radical shift in reality, this is something Michael has undergone several times. The first perhaps came when his health started to collapse as a complication of Alport syndrome, a genetic condition which can attack kidney function among other things. An avid hiker, rock climber and kayaker, Michael had to first give up his former activities and then rely on dialysis to clean the toxins from his blood. The invasive, time-consuming procedure allows the body to function but does not offer much in terms of wellbeing or quality of life.
Barb’s decision to offer her younger brother one of her kidneys and the good news that they were a suitable match offered a vastly different experience for Michael, who will be 52 this June. After his initial recovery from the surgery he was feeling so good, in fact, that he went out and bought a guide to the West Coast Trail and made plans to do the hike the following year. He soon realized that was unrealistic and that his expectations were too high.
“It’s just such a difference from pre-transplant to post. You feel invincible and then it wears off. It took a few years to reconcile to that because I did have a gradual run-down of energy. It just meant finding a new balance, finding limits and not resenting anything,” Michael said. “It’s been 10 years of major adjustment, but for the most part freedom. No more dialysis, no more special diets, no more health running down every day and getting worse. It’s so much better than pre-transplant.”
Barbara’s recovery time was much less intense but the experience also led to a transformation. Michael sold his business — The Fritz Movie Theatre — after the surgery and returned to photography, including a new exploration of digital techniques. As he moved through that world and began upgrading his equipment, Barb became the beneficiary.
“It’s been fantastic,” she said. “By getting the practice in and using the professional gear and software, I’ve been really able to progress as a multimedia artist.”
Her mixture of images and poetry has led to a regular page called Rhen’s Poetry in Aqua magazine, and a book which she’s had printed as a proof. The next step is to find a publisher or a patron.
The transplant is a treatment and not a cure for the underlying syndrome, which means Michael still faces chronic fatigue and other issues. He’s also on a lifelong medication regime, which often results in side effects. With the necessary change in lifestyle he has stepped back from his commercial photography work and previous focus on publishing books and is now enjoying a more leisurely exploration of fine art possibilities. Having a functioning kidney has also allowed the siblings to stay on Salt Spring and care for their aging mother together more effectively; without it they would all have had to move to a centre with more supports.
“I feel really grateful we have this treatment available, and I had such an incredible transplant team,” Michael said.
In addition to continuing care from his nephrologist, he also goes to Lady Minto Hospital once a month for blood work and has found a strong connection there as well.
“It’s like having an extended family,” he said.
For anyone who might be thinking about donating a kidney to someone in need or wondering if they should register to donate organs and tissue after death, the Levys are full of encouragement.
“It’s a wonderful thing to do as a human being, without too much stress. It’s so life-affirming,” Barb said.
“It will change someone’s life profoundly. It will be a rebirth,” Michael explained. “There’s no doubt without Barb’s gift my life would have been infinitely worse. If someone’s ever considering giving an organ, tell them ‘150 per cent yes.’”