Vermont man’s search for a kidney complicated by new rules for organ donations

  • Susan Fuller prepares to unhook her husband Jeff from his hemodialysis machine at their home in Brookfield, Vt., on April 22. Jeff Fuller is in need of a kidney transplant. The couple has to be very careful to avoid infection during the procedure. Valley News — Jennifer Hauck

  • Four days a week, Jeff Fuller is hooked up to a hemodialysis machine to eliminate toxins in his blood.

  • After hours of being connected to a hemodialysis machine, Jeff Fuller is able to leave his chair where the procedure takes place at his home in Brookfield, Vt., on April 22. Susan Fuller trained at the University of Vermont dialysis center to be able to run the machine at home for her husband. Valley News — Jennifer Hauck

  • Jeff Fuller gives his dog, Ike, attention after receiving dialysis treatment at home in Brookfield, Vt., on April 22. Fuller spends hours reading when on the hemodialysis machine his wife operates at their home. Valley News — Jennifer Hauck

  • Jeff and Susan Fuller set up a call with doctors while on a hemodialysis machine at home in Brookfield, Vt., on April 22. Jennifer Hauck / Valley News

Valley News
Published: 5/24/2022 6:08:07 PM

Four hours a day, four days a week, Jeff Fuller’s blood travels through a hemodialysis machine.

Without a functioning kidney, Fuller, a 66-year-old Brookfield, Vt. resident, has no other way of eliminating toxins from his blood.

He’s been reliant on the machine, sometimes known as an artificial kidney, since February 2021, when a kidney he received as a transplant from a deceased donor in 2008 failed.

Hemodialysis replaces part, but not all, of a person’s kidney function. Cardiovascular side effects are common for people on dialysis. Last summer, Fuller had two heart attacks in two weeks, requiring triple-bypass surgery.

Seated in his Brookfield living room beside his wife, Susan Fuller, last month, Jeff Fuller said he feels “tired all the time.” If he does anything he’s “wiped.” He also has to restrict his fluid intake, giving up craft beer and sticking to just one 8-ounce cup of coffee and some sips of water each day.

To return to better health, Jeff Fuller needs a kidney transplant. Following his first transplant in 2008, he felt “stronger,” “more alive” and had “more vitality,” he said. Susan Fuller said he was “back to the man I knew.” He was able to return to his work as a technical sales representative for a food safety company but has since retired.

Jeff Fuller said his doctors told him his initial kidney failure was related to overuse of ibuprofen. But kidney failure, a condition shared by nearly 800,000 other Americans, is often caused by diabetes, cardiovascular disease and a genetic disorder called polycystic kidney disease. Because diabetes and cardiovascular disease are on the rise, so is end-stage kidney disease, according to the Centers for Disease Control and Prevention.

Getting a new kidney already required yearslong waits, but amid the growing demand for donated kidneys, a change in the way the organs are allocated has made it even more difficult for people like Jeff Fuller to get organs from deceased donors.

Allocation changes

Getting a kidney transplant in New England became about twice as difficult in March 2021 when new rules went into effect, changing the way donated organs are distributed.

Instead of most organs from deceased donors in New England staying here, now they are allocated to people within a 250-mile radius of the donor hospital, which throughout most of New England now includes New York City.

The nonprofit United Network for Organ Sharing, UNOS, says on its website that it was necessary to move away from the previous regional allocation system because of geographic disparities in timely access to organs.

The organization says that the new policy is expected to improve access for transplant candidates, including: Children, ethnic minorities and people who are very hard to match for biological reasons.

But Dr. Michael Chobanian, medical director of transplantation surgery at DHMC, said the change fails to address the underlying driver of geographic discrepancies. New York City, which has a population of about 8.8 million, has more people in need of kidneys but a lower percentage of people donating them than New Hampshire, he said.

Though the previous system was considered inequitable because people in some places were waiting longer for organs than in other places, Chobanian said that this solution is unfair for people in New England.

“Per capita, we have more donors than New York does,” he said. The change in allocation process “did not address the problem. The problem was donation rates.”

Before March 2021, the wait time for a kidney transplant for Dartmouth-Hitchcock Medical Center patients with type A blood was three years; for patients with type O blood it was five years; and with type B blood was about seven years, Chobanian said.

Since then, “essentially what has happened with the new allocation system is that everything has doubled,” he said.

As of April, DHMC had 135 people on the waiting list for new kidneys and continued to add two or three a week, Chobanian said. Before the change in allocation practices, DHMC had done as many as 50 kidney transplants per year. Last year, it did 25, including just nine from deceased donors, according to data from UNOS.

Time is critical for people waiting for organs, Chobanian said. Each year someone is on dialysis, they have a 7% chance of dying, which is cumulative. So by the fifth year of dialysis, a person’s risk of dying is 35%.

“Not many people live more than six (or) seven years,” he said.

In addition to adding to the wait time for patients, Chobanian said the change also increases the amount of time organs from deceased donors are on ice, potentially reducing their viability.

And while patients on dialysis wait, they experience a range of symptoms including chronic fatigue, sleep disorders, anorexia and fluid retention.

Waiting

For his part, Fuller is on the waitlist for a kidney from a deceased donor at the University of Vermont Medical Center in Burlington and in the process of being listed at DHMC.

Meanwhile, Susan Fuller, a 67-year-old retired medical researcher, trained at the University of Vermont dialysis center in South Burlington, Vt., last summer to do Fuller’s dialysis at home. Doing so saves them regular trips to a center in Berlin, Vt., where Fuller had previously been doing dialysis.

Given their technical work backgrounds, neither of the Fullers was intimidated by the technology involved, and the cost of the machine and supplies is covered by Medicare, Susan Fuller said. Still, there were several steps to getting set up to do dialysis at home. They had to have their water tested. While the filtration is ongoing, Susan Fuller has to watch for air in the lines. They also have to take pains to avoid infection.

“It’s a lot,” Susan Fuller said.

She has to keep inventory of the supplies and regularly take blood samples to Berlin for testing. On top of that, she has to keep up with the regular tasks of managing a household such as grocery shopping.

There are “days I fall asleep in the chair a bit,” she said.

The couple used to travel, but now Fuller said he’s “married to the machine.” While he missed his annual deer hunting trip to a camp up on the Canadian border, he was able to go up during muzzleloader season by scheduling dialysis at a center in Newport, Vt., a 45-minute drive from camp. That, he said, was “better than nothing.”

‘Equalize the playing field’

As a result of the changes in the allocation of donated organs, Chobanian recommends that people get their names on waitlists of more than one hospital, outside of the 250-mile range of each other. He also is urging people to seek living kidney donors.

Sandra Potter and Eleonore Baughan, first-year medical students at Geisel School of Medicine at Dartmouth, recognize the increased challenges facing patients in northern New England who need a kidney transplant.

To address those challenges, the two plan to interview patients still waiting for organs about the barriers they face, as well as ask patients who have found live donors what made their search successful. From there, the students plan to develop educational materials to assist patients in finding a live donor.

Given that the “patient population here (is) predominantly older and from rural areas” there may be technological or other barriers to finding living donors, Baughan said. The students aim to “do something to help equalize the playing field.”

The New Hampshire/Vermont chapter of the nonprofit Albert Schweitzer Fellowship, which focuses on addressing health disparities in communities throughout the Twin States, recently awarded Potter and Baughan a yearlong fellowship to support the project.

Ultimately, Potter and Baughan said they hope to establish a “donor champion program” that connects volunteers with patients to help them search for a donor.

“It is a full-time job to look for a living donor,” Potter said. If someone is sick and lacks a large social network, the search can be even more difficult, she said.

They’re “hoping with this champion program, someone can help alleviate that,” she said.

‘Doing something’

In the meantime, patients and their families are working with the resources available to them. Last fall, Susan Fuller took to social media in an effort to find Jeff Fuller a new kidney. She said the care team at DHMC told them that while social media has its downfalls, it can be a good way to find donors.

“Because of the very long wait time, we believe the best chance Jeff has of getting a kidney is through a living donor,” Susan Fuller wrote in an October Facebook post.

Living donors must be at least 21 and without major medical or psychiatric illness, according to Dartmouth Health’s website. Smokers interested in becoming donors are encouraged to quit. Donors cannot be pregnant, and women must temporarily stop taking birth control pills due to the risk of blood clots. Donors should have health insurance and a primary care doctor. Potential donors undergo initial testing in order to determine their kidney function and compatibility with the intended recipient.

The Fuller family, which also includes their two sons and three grandchildren, have created signs they’ve posted around Orange County, as well as a website, kidney2jeff.com, to get the word out about Jeff Fuller’s need.

They’ve had several friends and family members step up, but so far they’ve all been eliminated “for one reason or another,” Fuller said.

As recently as last month, the Fullers got their hopes up when it seemed like they were close to finding a match.

“The donor had gone through months of evaluation only to be deemed ineligible at the very end,” Susan Fuller said in an email last week. “We mourned the loss for a few days but then got up and dusted ourselves off.”

Susan Fuller is now being evaluated for donation, after making a change in her hypertension medications.

“If I make it through all the testing, I would donate under Dartmouth Health’s voucher program,” she said last week. “This allows me to donate to another person in need. Under this program, Jeff then would get a voucher to use at a later date, but it moves him up on the list.”

If it works out, Susan Fuller said she’s hopeful that she would have time to recover from surgery before her husband, so she would be able to support him during his recovery. A few other people have also stepped forward to be evaluated as possible donors in recent weeks.

While working to find Jeff Fuller a donor adds to Susan Fuller’s lengthy to-do list, it also gives her hope.

“It feels good to be doing something,” she said.

More information about becoming a kidney donor is online at: dartmouth-hitchcock.org/transplantation/becoming-living-kidney-donor.

Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.


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