How organ donation saved my life

Five years ago, Alley Adams was busy travelling and working—not unlike other professionals in their early 30s. Though she had been living with Type 1 diabetes since she was five, she never thought her health was in jeopardy. But in November 2018, while video-chatting with a friend, she suddenly had trouble following the conversation. “I knew something was wrong,” she recalls. Adams was rushed to hospital, on the verge of a heart attack. Soon after, she found out she was in end-stage kidney failure.

“Kidney failure is a major risk factor for those living with Type 1 diabetes, and it’s not uncommon for symptoms of kidney failure to go unrecognized until it is too late,” Adams says. “I didn’t even realize how serious it was at the time.” But the situation was serious. Adams’ lifelong diabetes had severely damaged her kidneys. Her best treatment option was a dual kidney and pancreas transplant. 

UHN’s Ajmera Transplant Centre clinicians have found that simultaneously replacing the kidney and pancreas is the most effective treatment for patients with Type 1 diabetes and end-stage kidney disease, as in Adams’ case. These surgeries dramatically improve quality of life because a new pancreas provides regulated insulin production to treat diabetes while a new kidney eliminates the need for dialysis.

While waiting for her transplants, which she received from a deceased donor, dialysis became a part of Adams’ routine. “I had to be the youngest person on the floor, but despite the fact I was dying, I kept moving forward. I didn’t want to miss out on living.”

Transplants and Type 1 diabetes

“After 30 years, most Type 1 diabetes patients have kidney damage,” explains Andrea Norgate, kidney/pancreas transplant coordinator at UHN, who helped coordinate Adams’ transplant surgeries. “The longer you have it, the more renal impairment there is. You cannot reverse kidney damage, so transplant becomes the only option.”

Norgate knows all too well about diabetes and transplants, not only as a registered nurse who has spent her career supporting patients like Adams, but also because her son has Type 1 diabetes as well. In fact, Norgate donated her kidney as part of a living donor chain in his honour to show how important and safe living organ donation is. 

“My son has to think about his blood sugar every few hours,” she says. “It’s not easy. He constantly has to test and inject insulin. And there’s always the worry that something will go wrong, even if you do everything right. Imagine taking that burden off the patient. That’s what transplants can do.” Norgate is confident that if her son requires a transplant, they will find a living donor.

What is living donation?

A living donation happens when a living person gives either a kidney or a part of their liver to someone with end-stage kidney or liver disease. The UHN’s Living Donor Program assesses and tests potential donors to see if they can donate, educates donors about the transplant process, and provides exceptional patient care at all stages of the transplant journey. 

Unfortunately, the need for organ donors is high. In 2021, there were 1,611 kidney transplants in Canada. Still, at the end of the year, nearly 3,000 people remained on the kidney transplant waitlist. To try to eliminate the issue of donor scarcity, UHN researchers, like Dr. Cristina Nostro, affiliate scientist at the Ajmera Transplant Centre, are doing groundbreaking work with stem cells to create islet cells. These cells have the ability to produce hormones, like insulin, meaning that donors are no longer needed.

More than just a transplant

In May 2021, Adams received her life-saving dual transplant at the Ajmera Transplant Centre, a leading transplant centre where surgeons have performed this procedure since 1995. The centre also provides the expert care needed to ensure patients remain healthy post-surgery. “Alley will be our patient for the rest of her life,” says Norgate. “Our job is to help her get very old. And hopefully, she never has to take insulin again.”

Now, at 36, Adams—who is exceptionally grateful to her donor and the team at UHN—enjoys freedoms she never imagined. “Transplant has given me a new lease on life, but I would never wish kidney failure and transplant as a means to a cure on anyone. Many of the challenges Andrea’s son has to face on a daily basis I have been relieved of—but we must do more to protect the lives of those most vulnerable and ensure greater access to transplant and treatment.”

To find out more about organ donation and support the Ajmera Transplant Centre, click here.

Adams is a member of UHN Impact Collective, a group of next-generation leaders who share a passion for community building and advancing the future of health care.

To join this community and attend one of their beloved community events in support of UHN Foundation, please purchase tickets for Live it UP! on April 28, 2023, at Daniels Launchpad here.