CHICAGO -- Jon and Carol McCabe were in the Galápagos Islands with their family for the trip of a lifetime. The couple from Clarendon Hills, Illinois, shared 30 meals with their children and grandchildren and admired diverse wildlife.

But Carol’s health rapidly declined during the trip. She struggled to walk long distances and needed lots of naps.

“The fatigue was overwhelming,” the 74-year-old recalled from the 2021 summer vacation.

Carol’s nephrologist broke the news a few months later that her kidney function had deteriorated to 14%, meaning her chronic kidney disease progressed to stage 5, described as “kidney failure.”

Chronic kidney disease is quite common, affecting 1 in 7 adults in the United States, with more than 800,000 Americans living with kidney failure, according to the Centers for Disease Control and Prevention. If someone’s kidneys fail they have two options in order to live — receive a kidney transplant or undergo taxing dialysis treatments. For elderly patients, choices are often more limited.

“She was a 72-year-old woman with kidney failure and it’s a seven-year wait (for a kidney transplant), and her life expectancy on dialysis is three-and-a-half years. So if she can’t get a living donor kidney, she ain’t getting a kidney, she ain’t getting dialysis and she’s going to die,” Jon said. “That was the reality we were facing.”

Jon, now 75, immediately knew he wanted to donate one of his kidneys to his wife, a hope that became a reality almost two years ago through Loyola Medicine’s Living Kidney Donor Program. The transplant gave the couple their “life back,” but was at times a complicated and emotionally fraught process. It also highlighted some of the barriers to both donating and receiving a kidney after the age of 70, obstacles some doctors believe might be standing in the way of helping relatively healthy elderly patients.

The duo met while attending Northeastern University in Boston. Carol was a freshman, while Jon was a sophomore. She remembers him as kind and thoughtful, bringing her milkshakes at night during finals. Jon said Carol was “absolutely beautiful” inside and out.

After three years of dating, they married in 1971 and had two kids. Carol worked as a dental hygienist and real estate agent, and Jon was the general manager of the Union League Club in the Loop. They’ve been retired for about 10 years.

“I have been in love with this woman since the moment I first saw her,” Jon said.

Beginning in the early 2000s, Carol started to suffer painful kidney stones, eventually leading to scar tissue that caused her kidneys to not function properly. She once had surgery to remove 35 stones.

Average wait time of five to seven years

When Carol learned she needed a transplant, she contacted five transplant centers in the Chicago area. She and Jon said they faced several hurdles, from slow response times to conflicting opinions from physicians. Ultimately, they learned from their medical team that Carol’s chances of getting a kidney from a waiting list were small due to her age and that a living donor kidney was her best option.

“One of the things that transplant patients have to understand is that there will be roadblocks that come up at every step of the way,” Jon said. “If you let the roadblocks stop you, you will never get your chance. You have to have an advocate and you have to be your own advocate.”

The average wait time in Illinois for a kidney is five to seven years, precious time for patients in their 70s like Carol. While there isn’t a universal age limit for kidney transplants, older patients also often face additional evaluations to be approved. About 15% of all kidney transplant recipients to date have been over 65, according to the Organ Procurement and Transplantation Network.

It’s also more difficult for seniors to be accepted as donors. About 6% of deceased donors to date are over 65, and just 2.5% of living donors, per OPTN data. Deceased donors are significantly more common than living ones, although living donor recipients generally have better long-term outcomes.

Dr. Rupi Sodhi, a transplant nephrologist at Loyola, doesn’t think blanket rules that exclude older transplant recipients or donors make sense because every patient’s health situation is different. She acknowledged that elderly patients, particularly those on dialysis, tend to be more frail. Not only does the immune system get weaker after age 55, but those in need of a transplant typically have chronic conditions such as diabetes or high blood pressure that lead to kidney failure in the first place.

Dialysis — treatments to remove extra fluid and waste products from the blood when the kidney isn’t able to — also “significantly impacts” quality of life, causing fatigue, loss of appetite and heart disease, among other symptoms, Sodhi noted.

However, she said she believes transplant cases should be evaluated on a “case by case basis.” When she met Carol and Jon, she thought they looked much younger than their actual age. Besides being very motivated to donate, she said Jon was well educated, didn’t have a lot of medical problems and even exercised three times a week.

Loyola along with most other transplant centers won’t accept every 70-year-old that walks through the door, Sodhi said. But if they can pass the gamut of nutritional, financial, health and social work assessments, they shouldn’t automatically be turned away, she said.

Other research supports her idea. For example, Johns Hopkins Medicine found in a 2011 study that kidney transplants performed using live donors over the age of 70 are “safe for the donors and lifesaving for the recipients.”

“My parents are in their late 70s, and they’re the epitome of health. So I always think about if my mom needed a kidney I wouldn’t want someone to turn her away without even meeting her simply because she was over some age cutoff,” Sodhi said. “If they have a problem with something that they see in her chart and they see when they examine her or talk to her, that’s a different story.”

‘Public health crisis’

Experts have called the shortage of kidneys available to transplant a “public health crisis” across the country, with about 90,000 patients waiting for one, including more than 3,400 people in Illinois. There are lengthy waiting lists at area hospitals, from 350 people at Loyola to 850 at Northwestern, according to data from the Scientific Registry of Transplant Recipients.

“We’re not unicorns,” Jon said. “There are a lot of healthy people out there, who have 10 to 12 years. I’m pretty sure my kidneys will outlast both of us.”

Megan Parker, Loyola’s living donor transplant coordinator, said finding a suitable donor is largely “recipient driven,” checking that blood types and antibodies are compatible. Jon was committed from the beginning, she said. For others looking for a living donor, she recommends asking as many family and friends as possible.

“From the first phone call we had with him, I knew that he was going to do everything in his power to be her donor,” she said. “He was willing to go through anything. He would have done whatever testing we needed, whenever we needed.”

Within months, Carol got a new kidney from Jon. After their surgeries, Jon left his bed to sit by Carol’s stretcher, holding her hand.

Their recovery for the most part has gone well. They both have some symptoms — Carol struggles to fall asleep at times and Jon can now only drink one martini before dinner — but they both say it beats the alternative. Their only ground rule is they can’t mention the kidney while arguing.

“I couldn’t wait to be by her side and hold her hand,” Jon said. “I was watching my wife die before my eyes and now I have my wife back, and my grandkids have their grandma and my kids have their mom.”

©2024 Chicago Tribune. Visit at chicagotribune.com. Distributed by Tribune Content Agency, LLC.