Anthony Boccalini, suffering from a rare inherited condition that caused his mother Judy’s death three years ago, is hoping for a kidney transplant that could save his life.
Boccalini, 41, is the youngest of six siblings in the well-known Plymouth family. Four of them have the dominant gene that causes the deadly condition, a form of Autosomal Dominant Tubulointerstitial Kidney Disease.
On a recent day, Boccalini and two of his sisters, Anathea Viscariello and Aleta Hickey, spoke at his Pleasant Street home about the effort to find a donor match. Until then, he is kept alive by dialysis, which he can stay on indefinitely as long as his body tolerates it.
The disease involves a gene mutation that over time causes renal failure.
Boccalini has already had one kidney transplant, after being diagnosed with the condition in his early twenties. Both kidneys are affected.
“I went for a blood test, and they said that everything looked abnormal,” he said.
He began seeing a nephrologist – which is a kidney specialist – at Saint Elizabeth’s Medical Center in Boston, in an effort to keep the disease in check.
“I was on a lot of medication for quite a while,” Boccalini said.
He was put on dialysis until receiving a kidney transplant in 2019. Because people can live normal lives with a single kidney, Boccalini was given new hope, with a caveat – the transplanted organ was donated by someone who had died, meaning it would not last as long as one from a living donor.
Unfortunately, that proved to be the case.
In May of last year, he started to get “really sick,” with hot flashes and sweating. It became difficult to keep food down.
“You don’t sleep,” Boccalini said. “You have a really hard time eating certain foods. There’s a lot of things you can’t eat.”
The disease causes fluids to build upin the ankles, legs, eye sockets, and ears, he said. It causes facial and finger joint swelling, gout is also a common symptom.
Boccalini was told that the transplanted kidney was failing. He was hospitalized eight times over five months – in Boston and at Beth Israel Deaconess Hospital-Plymouth. At one point, he was so ill he had to be flown by helicopter to Beth Israel Deaconess Medical Center in Boston.
My “blood pressure was out of control,” he said.
He had to go back on dialysis. Now, he now receives treatment three times a week in four-hour sessions at Fresenius Kidney Care in Cordage Park. The treatments are so time-consuming that he had to quit working as a sales representative, adding financial pressures to an already stressful situation.
“Being on dialysis is a job,” he said. “I can’t take off for a week and go on vacation. I can’t really have a job where I have to go on training or travel or be out of town for two days.”
There are other constraints, too. Because he has a port in his chest for dialysis, he must cover it to shower, a cumbersome process. He plans to have a fistula port installed in his arm to allow him more freedom.
“Then it’s under the skin so then I can go swimming, and I can shower,” he said. “I’m actually looking forward to that.”
“It’s a lot,” said Boccalini, who shares custody of his nine-year-old son. “It’s just frustrating because I was feeling so good, and then I got sick again.”
Now the race is on to find a new kidney before his condition deteriorates more. Potential kidney donors can apply to Massachusetts General Hospital to get more information. Boccalini realizes it’s a big ask.
“It is very time consuming,” he said of the donation process. “You have to spend a lot of time going to Mass General and going through different tests and then, obviously, you have to have surgery at some point and that’s going to incapacitate you for several days. So it’s not easy to find someone to be willing to do that.”
Hickey said her brother is a good candidate for a kidney transplant because he is otherwise healthy.
Boccalini’s siblings form the core of a support team that extends across Plymouth. It includes a group of childhood friends who call themselves the Springers, named after Cold Spring Elementary School in North Plymouth, which they all attended.
His friends have started a GoFundMe page that so far has raised more than $32,000 to help with medical expenses and provide Boccalini with income.
“People I haven’t talked to in years, since I was a kid, or in college, have reached out and offered support,” he said.
The Cold Spring friends have helped with rides to dialysis appointments and anything else Boccalini might need.
“Making sure he’s eating what he’s supposed to, not drinking anything bad,” said Viscariello.
“We have kids and jobs too, so when they came in to help, it’s been so awesome,” said Hickey.
Among the Cold Spring friends is Sam Palagi, a Plymouth firefighter. While they had stayed in touch over the years, getting a pizza together every few months, Palagi said he was not aware of how sick Boccalini was until Ana Walsh, a mutual friend from Cold Spring (and a Plymouth Independent board member), reached out.
“Tony really needs help,” Palagi said Walsh told him.
“And he would not tell you this, but he needs people to stay in touch with him and check in on him,” Walsh, who owns Vela Juice Bar on Court Street, told Palagi.
Walsh had set up a private website with an online schedule, so people could sign up to take Boccalini to dialysis.
Palagi said he has coffee or breakfast with his friend a couple times a week.
“I didn’t really think about it, but that constant interaction and knowing that your friends are there and checking in you, I think that’s played a big part in keeping his spirits up,” Palagi said. “I think it speaks to how important friendship is and having people who truly care about you.”
Boccalini’s family and friends have organized a fundraiser scheduled for March 14, from 4 to 8 p.m., at the Garibaldi Club, at 36 Castle St. People interested in finding out whether they are a donor match can ask questions and learn about the process from medical professionals.
Despite his extended ordeal, Boccalini is optimistic about the chances for a successful transplant.
“It’ll come,” he said. “I feel very positive about it. I have a good feeling about it. I think it’s right around the corner. We’ll get somebody.”
Fred Thys can be reached at fred@plymouthindependent.org.