Hannah Schroeder / Sentinel Staff
Story Produced by Keene Sentinel, a Member of
KEENE, NH – For the two years that she was Keene’s youth services manager, Demitria Kirby wanted to help the region’s teens live healthier lives. Now, she’s facing a life-changing health issue of her own, and coming to the community she calls home in hopes of finding help and raising awareness.
“The [organ donation] program was very clear with us: The only way you’re going to get a kidney is if you put yourself out there,” said Kirby, who now lives in Middlebury, VT., where she moved in 2021 for a job as associate vice president of safety at Middlebury College.
Kirby, 33, is in kidney failure after serious complications following the birth of her second daughter last July. Now, every Tuesday and Saturday she drives an hour each way to dialysis, where her blood is filtered by a machine that removes waste products and extra fluid — work that Kirby’s damaged kidneys can no longer do.
The process, which takes about four hours, keeps Kirby alive and feeling well, but eventually she’ll need a kidney transplant. The wait for a transplant from a deceased donor is an average of four years in New England, according to Beth Israel Deaconess Medical Center in Boston.
Research shows that the longer patients are on dialysis before transplant, the shorter their lifespan is after transplant, according to the Mayo Clinic. On the other hand, donated kidneys generally work longer for patients who receive a kidney from a living donor, according to the U.S. Department of Health and Human Services.
Because of that, Kirby is hoping a living donor will step up, allowing her to bypass the kidney wait list in order to regain her health and spend more time with her daughters, Beatrice, 7, and Cecilia, 9 months.
Seeing the impact on them has been the hardest part of Kirby’s health struggle, she says.
“When you’re a parent, you want to shield your child from the hardships in the world, so it’s been really hard to feel like I’ve brought those hardships into our home,” said Kirby, a 2021 recipient of one of Keene State College’s Outstanding Women of New Hampshire Awards.
Meghan Marcucci, director of the Monadnock Youth Coalition, says Kirby was an important mentor for her as the two advocated for juvenile justice. The impact of Kirby’s work, which included expanding the Juvenile Court Diversion Program, can still be felt in Keene today, she added.
“Everyone deserves support, but she deserves as much support as family, friends, and the community can provide her,” Marcucci said. “I’m rooting for her.”
A new baby, then a life-changing emergency
This time last year, Kirby was eagerly awaiting the birth of her second daughter, Cecilia.
“We had been waiting for another child for a while, so I was really happy to be able to grow our family,” Kirby said.
The birth, on July 2, went well. Kirby and her husband, Jim, spent hours cradling the baby and sending pictures to their family, many of whom live in Keene. Kirby spent her childhood in a military family that moved often, but lived in Keene for 14 years — longer than she’s stayed anywhere else. She considers the city home.
A few hours after Cecilia’s birth, Kirby started to hemorrhage. The next hours, days and weeks are “still really hazy to me even at this time,” Kirby said. She remembers snapshots, including Jim standing over her looking “like he’s never going to see me again.”
“I was just so confused,” Kirby said. “I had come into the hospital with such excitement about having a baby.”
She remembers thinking, “We just had a baby. We’re supposed to be happy. What is going on?”
Later, she would learn that she had HELLP syndrome — a type of preeclampsia, or pregnancy-induced hypertension — which is characterized by the breakdown of red blood cells, elevated liver enzymes and low platelet count.
Kirby was transferred from Porter Medical Center in Middlebury to the University of Vermont Medical Center in Burlington, which was better able to handle her serious condition. She woke up in the hospital by herself, with most of her vision gone, a complication of HELLP syndrome.
Over the next two weeks, family members took turns staying with Kirby, watching the new baby and looking after Kirby’s older daughter. Kirby’s mother-in-law, father-in-law and three sisters-in-law came up from Keene to help.
“We have tried to be there physically as much as possible,” said Shannon Hundley, of Keene, Kirby’s sister-in-law. “That is probably the best part of all of this — we have had a lot of quality time with my nieces, but we would all prefer that it not have come at the expense of Demi’s health.”
When Kirby was discharged she realized that her maternity leave was going to be far different than she had ever imagined. She still hadn’t regained all of her vision and wasn’t able to be alone with her daughters.
“When you have this idea you’re going to be home for three months and making memories with your kids,” she said, “not being able to see their faces or take care of them was really difficult.”
Asking for a new chance at life
While Kirby was in the hospital, she was also diagnosed with atypical hemolytic uremic syndrome (aHUS), a rare disease that causes blood clots that can cut off the blood supply to the organs. Doctors believe she may have always had a genetic risk for aHUS, but the severity of her HELLP syndrome triggered the disease.
Kidney failure is a complication of HELLP syndrome and aHUS, and doctors had grim news: Kirby’s kidney tissue was 40 percent dead, meaning the organs are “not filtering [blood] at all,” Kirby said.
“They have not come back,” she added.
Initially, Kirby needed dialysis three times a week. She travels from her home in Middlebury to Burlington, about 60 minutes away.
Most rural counties nationally don’t have a dialysis facility, according to a 2024 study in the American Journal of Nephrology. Having to travel farther to dialysis is associated with higher risk of death and poorer quality of life, according to a 2023 study in the journal Kidney International Reports.
Now, Kirby only needs treatment twice a week, thanks to a strict diet and medications. Since her vision has returned, she can drive herself. However, the hours away from work and family still take a toll, she said.
Other than dialysis, the only treatment for kidney failure is a kidney transplant, accordingto the National Kidney Foundation. Humans have two kidneys, but can live a healthy life with just one, meaning that kidneys — along with livers — are one of the only organs that routinely come from living donors.
Last year, 6,900 living Americans donated a kidney, according to the United Network for Organ Sharing. Donors generally don’t pay for any of the costs of donation, and can often be compensated for missed work, according to the National Kidney Registry.
People with any blood type can donate a kidney to help Kirby get a transplant. If the donor’s blood type is not a match for her, doctors can do a paired exchange, where someone donates on behalf of Kirby, but their kidney goes to another patient with a willing donor who is a blood type match for Kirby. That patient’s donor kidney, in turn, would be transplanted into Kirby.
Some of Kirby’s friends and family have been tested to be donors, but so far, no one is eligible, she said. Nationally, only about 36 percent of people who try to donate a kidney are able to, according to a 2021 study in the journal Transplantation Direct.
Common conditions including having a high body mass index or a history of mental health disorders can disqualify a person, the National Kidney Registry says, though the organization notes anyone interested in donation should apply to see if they’re eligible.
Now, Kirby and her husband have made the uncomfortable decision to share their story in hopes of finding a donor, a step that the federal health department says is essential in finding a living donor.
“We’ve had to step outside our comfort zone,” said Kirby, who before this was private on social media and didn’t share pictures of her daughters online. “It was something we initially struggled with, but we were told that the only way this is going to happen is if you put yourself out there.”
This summer, Kirby is hoping to be able to join her Keene family in Ocean City, N.J., where they go on a beach vacation each summer. But due to dialysis, she has a port in her chest and can’t swim; in addition, she can’t travel unless she can book dialysis appointments at a different clinic. With a donation, problems like those could disappear, Kirby said, not just for her, but for the more than 90,000 people waiting for a kidney donation nationally.
“I’m not alone with this,” she said, adding she hopes more people will look into living donation.
“Just consider it as a way of changing someone’s life and giving someone another chance at life,” she added. “It’s a lot to ask for, but it’s a life-changing gift.”
Anyone interested in learning more about donating a kidney to Demitria Kirby can contact Dartmouth Hitchcock Medical Center’s Transplantation Surgery Department at 603-653-3931 or submit a form online. To learn more about living donation in general, visit the National Kidney Registry.
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