SPRING VALLEY — Dave Thouin needs a kidney.
Some of you might already be aware of this, because the 62-year-old Spring Valley resident hasn’t been shy about letting people know.
Thouin has saturated the area with letters to the editor and newspaper ads. He has plastered posters all over town. Magnetic placards on his truck proclaim, “Navy vet needs a kidney. Please, save my life.” He hands out business cards and distributes fliers with the message. He and his wife, Carol, maintain regular updates on Facebook and a Caringbridge site.
“I’ve done as much as I could,” Thouin said. “I was thinking about putting a great big sign in my front yard, but I wanted to see how these other things work.”
Thouin, a retired nurse, didn’t take his campaign for a kidney public right away. He did what experts advise. He shared his need with family, friends and co-workers. And almost immediately, he found a possible donor: His wife.
Carol’s blood type matched her husband’s. She desperately wanted to donate. The couple even had a date marked on the calendar for when the transplant would take place: Oct. 15. But on the last test before surgery, it was revealed that Carol had a minor heart value issue. That eliminated Carol as a donor.
“It was very devastating,” Carol said. “It’s still hard.”
As months have passed, Thouin has cast a wider net for a donor. But it didn’t come naturally. The first hurdle to overcome was the instinct most people have to protect their medical data, to keep it private. Carol’s rejection as a donor spurred Thouin to overcome that initial reluctance.
“It was all new to me for one thing, so I was feeling my way, trying to figure out what to do,” Thouin said. “After Carol was rejected, I sat down (and thought), ‘We’ve got to let people know.’”
Through it all, Dave and Carol have found themselves on a roller coaster of emotional highs and lows. Some people have come forward to donate a kidney to Thouin, but then failed to follow through. Others have gone through the process but have been rejected for medical reasons.
Recently, a woman reached out to them, indicating a desire to be a donor. Thouin and his wife set up a time to meet the woman in Rochester. But the woman never showed up.
Transplant experts encourage recipients to share their story, with a focus on family, friends, and co-workers and groups they have connections with, like a church or book group.
“The reason that we suggest that people start with groups of people that they are connected with is because those are the people who are often the most likely to donate,” said Jennifer Martin, vice president of program development for the National Kidney Foundation.
An all-but-the-kitchen-sink approach can work, but it carries risks. It can touch an anonymous person to donate. And there are many stories of such generosity.
In fact, Mayo Clinic has seen a “fair amount of people” come forward with a desire to donate a kidney but with nobody in mind to give it to, said Dr. Mikel Prieto, a Mayo Clinic transplant surgeon.
“There’s a tremendous amount of altruism in our society,” he said.
But it can also bring out strangers with less than pure motives.
“You start getting a fair amount of calls for the wrong reason,” Prieto said. “People either want some financial compensation or they are doing it for strange motivations.”
Thouin’s publicity campaign underscores how socially accepted kidney transplants have become — and how safe they are, officials say. Mayo Clinic has been doing kidney transplants since 1963, and there have been zero deaths from the surgery.
Part of that safety record stems from the stringent standards hospitals such as Mayo use in evaluating potential donors, Prieto said. They are put through a thorough medical evaluation, and if any risk factors or complications are identified, the person isn’t allowed to donate.
“We only allow people who are perfectly healthy and very low risk to do this,” Prieto said.
There are many good reasons for people in need of a kidney to seek out a live donor, rather than wait on a registry, experts say. For one thing, a kidney from a live donor is far preferable than one from a deceased donor.
The wait for a deceased donor’s kidney is typically five years. A patient will likely be on dialysis before a kidney becomes available.
A living donor kidney, moreover, is a “perfect kidney,” Prieto said. It comes from a healthy person. The surgery involves a relatively small incision, and the kidney is transferred almost immediately from the donor to the patient. The transplanted kidney starts working right away.
A kidney from a deceased donor, on the other hand, may be one of uncertain condition. The donor had to die first. The kidney may have multiple issues related to the manner of death and lifestyle. So the kidney may already be damaged before transplantation.
And the deceased donor’s kidney has to be transported, sometimes across country, to reach the recipient. It might be 24 hours to 36 hours before it reaches the patient.
A kidney from a live donor lasts, on average, 20 years to 25 years, while one from a deceased donor lasts 10 years to 14 years.
Seven months since he started his campaign, Thouin is still spreading the word about his need for a kidney. — and waiting. His place on the registry for a deceased donor kidney means a wait of three to five years. His kidney function is down to 18 percent. By the time a deceased donor kidney becomes available, he would likely be on dialysis, a prospect he dreads.
Mayo Clinic maintains a strict firewall between patients and donors. So if a person is going through the process to be a donor, Thouin wouldn’t even know it unless the donor told him.
“I keep the phone with me all the time, and I”m just waiting for that phone call,” Thouin said.