Using social media, email newsletters, and road-side lawn signs, Susan and Jeff Fuller are on the hunt for a living kidney donor. (Herald / Dylan Kelley)
More than a decade after receiving a kidney transplant that allowed him to live a mostly normal and active life, West Brookfield resident Jeff Fuller is in a tight spot.
Explaining that transplants have a “shelf life” of nine–10 years, Fuller said that his donated kidney began to fail in 2019, leaving him with a diagnosis of end-stage renal disease and no option but to seek out another organ transplant.
“When your kidney function reaches a certain level, either you die or you go on dialysis, or you get a transplant,” he said on Friday.
But because of a relatively recent restructuring of the system through which “deceased organs”—those from organ donors who have recently died—are distributed to recipients, Fuller’s expected wait time is far longer now than it was when he received his first transplant—growing from a 3–5-year wait time to a 5–7-year wait time. Between this, and Fuller’s age, which will render him ineligible to receive a transplant in a few years, he can no longer afford to wait for a deceased organ.
Instead, he and his family have turned to relatives, social media, and road-side lawn signs to find a living donor— someone both willing and healthy enough to give one of their kidneys to a total stranger.
According to Fuller’s wife, Susan, the campaign to find her husband an eligible donor began last fall after several rounds of testing and screening had failed to yield any matches. During one of many trips to Dartmouth-Hitchcock Medical Center (DHMC), a social worker suggested they try reaching out through social media, a strategy that, Susan Fuller said, has proven successful for others.
“That’s where we started looking for people, after our friends and family were already being evaluated or had been eliminated,” she recalled. “We started looking for people we didn’t know.”
But just because technology and road-side signs have helped them spread the word to more potential donors doesn’t mean the Fullers are breathing any sighs of relief yet. In addition to the 1-in-10 rate of candidates making it through the screening process, Susan Fuller said making the so-called “big ask” has also been challenging.
“It’s incredibly difficult for someone who needs an organ to ask for it,” she explained. “And then, of course, the ‘big give’ is a huge thing for somebody, especially somebody you don’t even know, to step forward and offer to do this for someone else.
“To be honest,” she admitted, “it’s not easy baring your soul to the world, we’re private people.”
Privacy, the Fullers explained, was a barrier for them as they tried to discern, week after week, how close they might be to finding a match. Because of medical privacy laws, both donors and recipients are extremely limited in how much they’re permitted to know about one another. In the case of the Fullers, the best they could manage was carefully asking DHMC personnel if they should keep spreading the word about the campaign to find a donor.
“It was a lot to even get them to tell me anything,” said Susan Fuller. “I don’t want to know any personal information, I just want to know if I should try to drum up more support—and the answer was ‘yes, you should.’” Now, the Fullers said, they are continuing their search after learning on Saturday that the one remaining candidate had withdrawn from the process.
“A person can back out right up until the very last moment, you can be being wheeled into the O.R. and have it all change.” Susan Fuller explained. “I’ve heard a couple stories of [recipients] thinking ‘this is it’ and then something happens and they’re told ‘nope, you’ve got to go home.’
“Some people go through that two or three times before they get an organ,” she added.
For those who are considering being a donor, the Fullers explained that the criteria for eligibility are pretty stringent—donors must have no signs or history of cancer, have high kidney function, a healthy body-mass index score, good blood pressure, and must not be diabetic.
Even if all of those criteria are met, a cross-matching test to check if the blood of the donor and recipient are compatible can also further winnow the number of candidates.
While he continues to wait, Jeff Fuller—an avid hunter and outdoorsman who loves grouse hunting with his dog, Ike—is forced to undergo hemodialysis at home, four days a week, in order to remove fluids from his body. The process, he said, is an exhausting one that also keeps him literally tethered to a machine for hours on end.
“It’s really hard because, having been through it before, I know how much vitality and life [a transplant] gave back to me,” he said. “Right now, on dialysis, you’re tired a lot and you can’t do the things that you’d normally want to do.”
Hoping to find any solution, Susan Fuller has recently explored donating one of her kidneys, even if she doesn’t match with her husband, That process, giving a kidney to another transplant recipient, would at least yield the possibility of moving her husband a little further up the lengthy wait list, she said.
But for now, until they receive word that a positive match has been confirmed for Jeff’s transplant, the Fullers are living in limbo.
“I think the biggest challenge is the waiting—the waiting is really tough. It’s the unknown and you don’t know if anything is going to happen,” he said. “It’s tough to stay positive all the time, you just got to believe it’s going to work out.”
The Fullers urged anyone who is interested in becoming a living kidney donor to get in touch with DHMC. Rather than calling, they recommend visiting the center’s website first at tinyurl.com/ycks24hv to learn more about the process and its eligibility criteria.