For five years now, Alisa has been waiting for a kidney donation that will transform her life – and spends nearly every evening tethered to her dialysis machine at home. “That’s my new normal,” she says.
But Alisa’s history of kidney disease – and her experience with kidney failure – goes back many years. Many of her relatives suffer from Polycystic Kidney Disease. So when she was tested as a teenager for the same hereditary condition, she wasn’t exactly surprised to learn that both of her kidneys were compromised.
“Dad, cousins, they all have it,” she says. In fact, some of her relatives have already received a kidney transplant.
While Alisa took care of her health, her condition worsened. In her late 40s, her doctors recommended dialysis and getting on the transplant waiting list.
She opted for peritoneal dialysis and began her long wait for a kidney transplant – registering at centers in two cities for a deceased donation. But she’s under no illusions. “There are soooo many people waiting for kidneys,” she says. “It’s about 85% of people on the waiting list.”
With wait times of up to 5 years or more, one hospital suggested that Alisa reach out to ask people to consider living donation. Since a person only needs one functioning kidney, a living donor can give one kidney to a recipient – a rewarding possibility that could help the person in need get an organ faster than waiting for a deceased donation.
For the recipient, it offers advantages over deceased donation. Transplants from compatible living donors generally fare better, can last longer, and mean a quicker recovery time for the recipient.
But Alisa, like many on the waiting list, finds it difficult to make the important ask. “It’s hard for me to ask people to put themselves at risk by giving up a kidney,” she says. “I know about everything that’s done to protect the donor – the thorough testing, the monitoring when they donate and in the future. But it’s still difficult. I’ve had mixed emotions, even when people have been tested to see if they match.”
In the end, Alisa decided to reach out through social media and the internet to tell her story. She also has a network of support and donor champions who can help her with outreach, which makes the job easier. “I find it easier to talk about living donation than ask for myself. Living donation just takes a special person – someone with compassion, empathy, and the ultimate giving spirit.”
A working professional, Alisa stays busy and undaunted about the wait ahead of her. “Whether it’s a kidney from a living donor or a deceased donor, I know I’ll get a transplant,” she says with confidence.
“I use prayer and positivity. I really believe that your mental health equals your physical health. It’s not about being sick, it’s about knowing that I’m going to get better. And I’m looking forward to that day.”
“I don’t want to be tied to a machine all my life. Receiving a kidney will do more than restore me to health. It will mean freedom. It will mean not being tethered, able to go places…imagine, being machineless. I might even start dating again,” she laughs.
What advice does Alisa have for others? “Don’t take your health lightly. Take care of yourself, starting now. Watch your high blood pressure. Watch your diabetes. Get to the doctor and stay on top of your health.”
“In other words,” she says, “don’t wait.”
Update: We are sad to report that Alisa did not survive the wait for a kidney transplant. She passed away on August 21, 2023, after spending more than five years on the waiting list. We are grateful for her positivity, for her courage in sharing her story with us — and for her wisdom and advice. In Alisa's words: “Don’t take your health lightly. Take care of yourself, starting now. Don’t wait.”
You could help someone on the waitlist. Learn more about living organ donation and contact a living donor transplant program in your area for more information on how to start the process.