Masa Holle had been tired for a long time, exhausted really. Maybe it was chronic fatigue syndrome, maybe something else. She never could get a clear diagnosis, she says. But by 2014, it was getting worse and she hardly had any energy most days. So her doctor in Peonia sent her to a nephrologist, a specialist in kidney disease.
“Your kidneys are scarring” Holle remembers the nephrologist telling her. “I’m not sure how long this has been going on, but I can certainly see why you’re tired.”
He gave her five or six months to live if she didn’t start treatment right away. She could hold off starting dialysis but it would be inevitable, he said. In the meantime, she needed to start looking for a kidney.
As of Oct. 15, 2018, there are 114,590 people awaiting organ transplants in the U.S, and the vast majority of them need a kidney, according to the United Network for Organ Sharing (UNOS). Someone is added to the national transplant waiting list every 10 minutes, and while one living donation is said to save eight lives, roughly 20 people die each day waiting for an organ.
After her diagnosis, Holle spent a week at a dialysis clinic in Montrose where she was trained how to run dialysis at home. She lives alone and had to set everything up on her own.
“I’m doing it in the morning, running to my office, running back home at lunch and doing it again,” Holle says. It was painful, tedious and largely uncomfortable. Her friend put out word on social media that Holle needed a kidney, hoping to find a living donor, a healthy person willing to donate and live with only one kidney.
“If you can bring a living donor to the table you get transplanted faster,” says Angela Miskolci a registered nurse and living donor coordinator at the University of Colorado Hospital in Aurora. “If you are an O blood type and you need a kidney, in Colorado your average wait time before you ever get one deceased owner offer is 6-8 years.”
Even still, a living organ donation often has a longer lifespan than one from a deceased donor. A living donor kidney lasts about 15-20 years if all goes well, an average deceased donor kidney, about 10-12, “and that’s a good deceased donor,” Miskolci says.
In those first few months, at least four people from Peonia were tested, Holle says, but none of them were a match. Blood type, size of the organ, age and immune system compatibility are all factored into what makes a good transplant match.
But then an old friend, Kate Lacroix from Boulder, reached out. Lacroix had been looking for Holle’s address to send her a holiday card when she saw that Holle was in need of a kidney on social media.
“It surprised me,” Holle says. “Someone just popped out that I hadn’t talk to in years.”
It had been years since Holle lived in Boulder, and Lacroix’s offer was more or less out of the blue.
“I just remember being struck by that and wondering if there was any possible way I could do it, I would,” Lacroix says. Unfortunately, after the initial tests, it was clear Lacroix wasn’t a match for Holle. Still, they could enter into a paired exchange through the National Kidney Registry (NKR), where Lacroix could donate her kidney to a stranger, and Holle could get a living donor match.
The first live kidney was transplanted in Boston in 1954, but direct donation can be tricky, with myriad compatibility factors at play. The idea of kidney swaps has been around for decades, but testing and matching between different donors and recipients across country has its own fair share of problems. Ten years ago, NKR was formed as a nonprofit based in Long Island that facilitates kidney transplants between a network of 85 transplant centers and has since become the largest kidney database in the country. It was founded by Garet Hil, whose daughter experienced kidney failure at age 10, and the family had a difficult time finding her a live donor through the then-available exchanges. Hil set out to develop an algorithm that helps determine the best matches at lightning speed, creating donor chains of multiple donors and recipients.
To set off a chain, an unmatched donor offers up their kidney, and the dominoes begin to fall — each recipient comes to the table with a donor who can give to another recipient who has a donor who can give to another recipient who has a donor…
But, Lacroix had to decide if she would still donate her kidney, even if it didn’t go directly to Holle.
“She calls me sweetie,” Lacroix says of Holle. “And she was like, ‘Sweetie, I just need you to know that at any step of the process you can say no if it becomes too much. I’m just so honored, but every step of the way you need to take care of you.’ She was very hands-off while I processed it all. But for me, I never once wavered, I never once thought I wouldn’t do it.”
It took nine to 10 months, Lacroix says, but they were eventually part of a 24-person chain, 12 donors and 12 transplant recipients.
In order for the chain to be successful, Miskolci had to coordinate with transplant centers all over the country, lining up surgeons and patients who could all do the surgery in the same time frame. Lacroix also had to travel to Aurora regularly for tests, and spent one full day meeting with doctors and a social worker to make sure she could donate.
“Just because you want to be a donor doesn’t mean you can,” says Dana Parker, a social worker and living donor advocate at the University of Colorado Hospital in Aurora.
Donors “need to understand what the risks are,” she says. “They need to understand how to avoid those risks, what that’s going to look like, how it’s going to affect your medical insurance, your life insurance. It’s just another kink in the process, but living donors can be seen as somebody with a pre-existing condition even though they are thought to be some of the healthiest people out there.”
After a slew of blood tests and medical exams, Lacroix also had to undergo a psychosocial risk assessment that looks at how she could cope with stress, ensure she wasn’t coerced into donating, and that she wasn’t going to get any financial or secondary gain from donating, all part of the process to ensure ethical live organ donation under the National Organ Transplant Act of 1984. Parker also had to make sure Lacroix’s family, including her two young daughters, were on board.
“Support is a big thing, you have to have somebody who is going to help care for you and your recovery,” Parker says. “Nobody can recover by themselves alone.”
The swap was scheduled for Dec. 1, 2016, and both Lacroix and Holle were at the Aurora hospital. Lacroix’s kidney was transported to an undisclosed location and an anonymous recipient; Holle’s new kidney was flown in from somewhere else from an anonymous donor. As she sat in the hospital waiting for the surgery to begin, a nurse came in and said, “We’re almost ready but we have to thaw out the kidney,” Holle remembers, a moment of levity in the middle of what could be a time full of doubt and fear. At that point, she had been on dialysis for about a year.
In the end, both surgeries were successful, as were all of the transplants in their chain, and the friends recovered down the hall from each other.
“It really felt like it at the time that I was receiving her kidney. Your mind knows better than your emotions, but it has always felt like that to me,” Holle says. “It was really a beautiful experience, hobbling to each other’s hospital rooms.”
Lacroix spent three days at the hospital in Aurora before finishing out the rest of her recovery at home in Boulder over the course of the next month. Self-employed, Lacroix was able to take the necessary recovery time, which on average is about six weeks. But national studies have shown that the average living donor loses about $2,000-$3,000 in wages as they recover from surgery, an insurmountable barrier for most people.
Currently, 19 states offer some sort of tax deduction or credit ranging from $5,000-$10,000 to cover costs associated with donation such as transportation, lodging and lost wages. In May of this year, the Colorado legislature passed, and Gov. Hickenlooper signed, the Living Donor Support Act. According to the American Transplant Foundation, who sponsored the bill, there are about 2,300 people awaiting an organ transplant in Colorado, and 96 percent of those need a kidney or liver. While these organs can be donated by a living person, more people die of kidney and liver failure in the state than by homicide each year.
According to the new law, living organ donors in the state of Colorado who make less than $80,000 a year will have 10 days paid time off for recovery, beginning Jan. 1, 2020. In exchange, the donor’s employer will receive a 35 percent tax credit for granting paid time off, plus an additional tax credit to cover the cost of a temporary replacement. One of the main arguments behind the bill’s passing is the economic benefits when patients with kidney disease are taken off dialysis after a successful transplant.
“Living organ donation is not only the most effective way to eliminate the organ transplant waitlist in Colorado, but is also the most economically beneficial way to address many chronic health issues, particularly kidney disease. On average, for each two transplant patients taken off of dialysis, Medicare saves over $500,000 over the course of 10 years,” Colorado Springs Sen. Bob Gardner said in a May press release.
Additionally, living donors are entitled to protected, unpaid leave under the Family and Medical Leave Act (FMLA), according to a U.S. Department of Labor August 2018 opinion. All of this is a move in the right direction, Parker says.
Last year, UCHealth performed 238 kidney transplants, 124 of those from living donors. Still, transplants aren’t a cure for kidney disease, they’re really just another form of treatment for kidney disease, just like dialysis. “But you have a better quality of life if you get a transplant rather than dialysis and over the long run it’s less expensive,” Miskolci says.
And that seems to be true for Holle, who now finally has energy to do the things she loves.
She’s been able to attend professional conferences and trainings for the first time in years, finally having enough energy to sit through a class and listen, or study at home. She also bought herself a piano and started playing again after more than 40 years.
“It’s just being able to dream of these things and actually do them is pretty amazing,” Holle says. “I’m 65 years old and I’m reinventing myself after so many years of just feeling tired.”
But none of it would have been possible without Lacroix or any of the other donors willing to offer up their kidneys as part of the exchange.
“I was overwhelmed by her (Lacroix’s) generosity,” Holle says. “One of the things Kate has always said to me, she’s always thanking me, saying thank you so much for letting me do this for you. That makes me want to cry. It’s just an overwhelming gratitude.”
It’s something Lacroix says as well, that she can’t help thanking Holle for the way donation has changed her life.
“My oldest daughter says I seem much more at peace, much happier, and I think the friends that know me say the same thing, that I’m much more grounded. And I’m not sure that would’ve happened without the donation,” Lacroix says.
“I think that the most empowering thing is to realize that we can do these big things, we can make a difference, it just takes a little bravery,” she continues. “There’s definitely strength in numbers.”