Joe Prince is no stranger to overcoming adversity.
The longtime Southern Arizona track coach beat cancer in college, had his Olympic dreams dashed twice and lives with Asperger syndrome, a mild form of autism.
Now, he has another challenge — getting a new kidney.
“It was 14 months ago,” he said. “That’s when I went to the doctor because my foot was hurting.”
“They gave me medications and they took blood tests, then they called me back immediately saying, ‘Do not take this medication because of the severity of your kidneys.’ That’s how I found out my kidneys were not working.”
That was November 2020, and Prince was told he has too much purine in his blood causing his kidneys not to function correctly.
Though Prince learned about his kidney problems over a year ago, he only got onto the United Network for Organ Sharing (UNOS) national waiting list three months ago.
“I had to go through all these tests, classes, psychological evaluation, had to go get surgery on my gums because they said if your teeth are bad it could affect your heart,” he said. “I also had to go through a colonoscopy and they had to put a stent in my kidney, all kinds of stuff.”
“I’ve been through it.”
Getting onto the national waiting list for an organ can be a “long, drawn-out process,” according to Darryl Lundeen, director of Transplant Services at Banner University Medical Center in Tucson.
“We look at specific criteria to determine if someone is a good candidate and they are put through rigorous elevation,” he said. “We do standardized testing, labwork, making sure the heart is in good condition, any issues with teeth must be taken care of. The last thing you want is an infected tooth. The process is stringent.”
He said it can take six months or more to complete all the steps, which includes meeting with specialized coordinators for everything from psychological evaluation to finances and medication needs.
It can be even longer based if a patient is already going through multiple health appointments each week.
“It is based on patient motivation too, and we use that as a barometer — if a patient doesn’t show up to three clinic appointments, that’s a red flag,” he said. “We take that all into consideration and once all the information is gathered a selection committee consisting of all the people in the evaluation process talk about a patient and determine if they are a good candidate. If they are, they get put on the national list.”
They also look at the caregiver plan, “someone willing to dedicate sometimes a year to get the patient to appointments,” Lundeen said. “So, we are evaluating the patient and the person they designated, and we ask for a backup plan, too.”
“The caregiver needs to have a working phone because we need to get in touch with them when an organ offer comes in. It sounds silly, but that call could be when you’re out shopping.”
There’s also the finance question, because transplants “are not cheap,” despite insurance covering a portion.
He said a kidney transplant averages $150,000 to $175,000, which includes evaluation up to the first three months post-transplant.
Who gets one?
The average wait time for a kidney, which is the most frequently transplanted organ, can be five to seven years, Lundeen said.
Banner’s kidney transplant program is known nationally as an “aggressive center,” and their wait time is closer to two years, if not sooner.
How long it takes to get an organ is based on multiple factors. Lundeen said they calculate a score based on the patient’s conditions and lab results. The higher the score, the greater chance of an offer.
“Sicker patients do get pritoized, it’s typically based on medical need,” he said. “UNOS has done a lot of work on changing the allocation system for all organs. If an allocation system changes, what it does is helps to better prioritize the list.”
Along with medical need, they look at surgeon and patient preferences.
For example, Lundeen said some organs they are offered may be from an “increased risk” donor, which can range from alcohol use to health conditions. Or, an organ might come from an older donor.
Those not interested in those won’t show up as a match as frequently with UNOS, which works with all the transplant hospitals in the country like Banner.
Though it can take time to get on the list and to receive an organ offer, the number of transplants in 2021 set a record. According to UNOS, more than 40,000 transplants were performed in 2021.
As of Nov. 30, Arizona had performed 1,104 transplants for 2021, and there are currently 1,632 Arizonans on the list.
A spokesperson for UNOS said the national wait list is the shortest it’s ever been.
As of Dec. 20, there were 106,833 transplant candidates waiting for an organ.
Where they’re from
According to UNOS, in 2020, 36,548 organs from deceased donors were transplanted and 5,725 from living donors.
Lundeen said organs can come from all over the country and they have had offers as far as the East Coast. Kidneys can travel well as a machine can pump it as it’s transported.
While deceased donors make up the bulk of organs, donations from live donors have a number of benefits and Banner is hoping to push to advocate educating the public on how it works.
“With living donations, there are probably people who want to do it and just don’t know how,” Lundeen said. “We want to focus on helping the community and make giving the gift of life as simple as possible for them.”
Lundeen said living donors go through a similar evaluation process to determine if they are a good candidate.
“They have to be healthy, they can’t be giving away a kidney when they shouldn’t, and they are put through the same process,” he said.
Lundeen said scheduling an organ transplant with a living donor, rather than waiting on a donor to pass away, is preferable.
Along with the ability to transplant quicker, kidneys from live donors lead to better patient survival rates and immediate functionality of the organ.
People are also able to select an individual they want to give an organ to through the Uniform Anatomical Gift Act. They go through the same process of determining compatibility.
Mind over matter
Lundeen said the recovery time after a transplant varies.
Banner’s program follows the patient for at least a year and offers free temporary housing to patients who are from out of town so they can monitor them up to three months.
Prince said he knows it could be a long time before he gets a kidney and he’s doing what his doctors have recommended.
“I’m very limited on the things I can eat and I have to drink a lot of water so I don’t get dehydrated,” he said. “Making sure I’m getting daily exercise, walking. You want to be ready if they call and they want your body in the best possible physical state.”
As far as his time as a coach, Prince said he’s “taking a step back.”
“No matter how much you think you’re in control, you never are,” he said. “Sometimes the challenges become bigger than the successes. Sometimes you have to take a step back, not totally walking away, but for right now, I’m taking a step back.”
He’s “lethargic” but practicing the “mind over matter” philosophy that has guided him through life.
That attitude helped him get through health problems earlier in life, like a cancer diagnosis at age 20 that halted his chance at the 1976 Olympics.
“I think it starts back to when I was a child. I never knew what my mom looked like, no picture, no anything,” he said. “I would challenge myself to stay positive and one of those days I decided I will find out who she is and what she’s about. Think about it, you in college then you have cancer…you keep moving.”
Prince said his mild form of autism has helped him through the process.
“I think one of the blessings of being on the spectrum of autism is certain things don’t affect you the way they would affect so called normal-thinking people,” he said. “It’s a security blanket. It takes me a long time to process things and by time I process it I’m on to something else.”
Though he’s resting and has to visit Banner regularly, he’s finishing up a book geared toward middle-schoolers based on his autobiography, “Liberation Saturday,” published in 2003.
“Keep throwing things at me and I’m refusing to wilt,” he said.