Would you donate a kidney to a nonrelative? This Lisbon woman did.
When close family friends sit around the kitchen table, they might talk about kids’ sports, school or vacation plans, movies or where to go to dinner.
But when the Martin family of Franklin and the McManaways of Lisbon sat around the Martins’ table on June 13, the urgent conversation centered on who among them was the best candidate to donate a kidney to Maddie Martin.
Maddie, 20, was born with Alport syndrome, a genetic mutation that affects her kidneys, eyes and ears. With medication, Maddie lived with few problems through high school and into her first college semester in fall of 2017.
But starting in November 2017, her kidneys deteriorated to an alarming level where a transplant was needed to save her life.
Medical screenings eliminated her dad, Daniel Martin, and revealed Maddie’s mother, Kelly Martin, and Tammy McManaway as the top donor candidates.
But Maddie’s mom is a carrier of the Alport syndrome genetic mutation that manifested in Maddie, so she, too, might be at risk of developing kidney problems. Or the donated kidney could cause a future flare-up in Maddie.
“How do you ask someone to give your child a kidney?” Kelly Martin recalled saying at that kitchen table meeting.
“You’re not asking,” Tammy McManaway quickly interjected.
The two families have been close for years. Maddie's brother, Jensen, and Shea McManaway played youth football together before concussions sidelined Jensen. At Norwich Free Academy, Shea was a star quarterback in the Class of 2018. Jensen, Class of 2019, was student athletic trainer and Maddie, Class of 2017, was team manager. Tammy McManaway took photos at the games.
McManaway, 44, was Maddie’s attendance secretary for her senior year at NFA.
“You don’t understand the overwhelming gratitude you have for someone who is willing to donate a kidney and save your daughter’s life,” Kelly Martin said recently, nearly choking up.
Maddie’s kidney transplant journey
Maddie Martin, who is studying nursing at Central Connecticut State University, describes her kidneys as an incomplete house, with the framing in place but no protective walls. The roof leaks; Martin’s kidneys leak protein molecules. She was diagnosed with Alport syndrome at age 4. She wears glasses and contacts for her eye damage, and hearing aids for her 50 percent hearing loss in both ears.
She was on a blood pressure drug, an angiotensin-converting enzyme inhibitor, to stabilize her kidneys. On that November 2017 day, after a workout, she was fatigued. Her clothes and skin reeked of ammonia. She even tasted it.
She stopped taking her medication, drank “a ton of water” and went to bed. The next morning, she saw her nephrologist, Dr. Cynthia Silva at Connecticut Children’s Medical Center in Hartford. She had experienced acute kidney failure.
Episodes recurred. Martin’s glomeruli filtration rate — GFR, the rate that kidneys filter blood — fell to 41 by November 2018. The normal rate is 100. She was put on a low-phosphate, low-sodium diet in anticipation of transplant surgery.
Martin started a blog to keep family and friends informed of her condition, feelings, outlook, and even the frustrating battles with insurance companies.
By March 2019, her GFR dropped to 25, and her doctor advised that it was time to consult with the kidney transplant center at Hartford Hospital. Patients become eligible for transplant when the GFR drops to 15.
On a trip home from Central in March, she visited McManaway at NFA. McManaway had read Martin’s blog. “I talked to my husband and I’m going to get screened,” McManaway told Martin.
With a reduced class load, Martin maintained an A average for the spring semester. When classes ended, she cleaned and painted her room at her Franklin home, calling it “nesting for my kidney,” in her blog.
“We didn’t even know if I would even be a match,” McManaway said on July 9, sitting at that same kitchen table at the Martins’ home. “Every time I went for a test, I passed. Each step, I did the next test and kept Maddie informed.”
McManaway went through urine tests, more than a dozen blood tests, an EKG, an MRI and a review of her medical history. As a donor, the entire cost of McManaway’s testing was covered by the transplant center at Hartford Hospital.
Kelly Martin would have donated a kidney to Maddie, even though Alport syndrome could damage her kidney at some point. “Who wouldn’t give their daughter a life-saving kidney?” she said. But fear that a kidney donated from her could cause a future flare-up in Maddie left McManaway as the top donor candidate.
Surgery and praise for Hartford Hospital
McManaway and Maddie Martin both praised the kidney transplant team at Hartford Hospital, as well as Connecticut Children’s. The staff and doctors clearly explained the procedures, risks and what to expect in surgery and recovery. Maddie loved how the team treated her donor.
“They really wanted to make sure the donor is well taken care of,” she said.
“They didn’t know Maddie,” McManaway said of her medical team. “It was about what’s good for me and my family.”
Dr. Silva, division head of nephrology at Connecticut Children’s, has been Maddie's nephrologist since she was 10. “She’s a spitfire,” Silva said, describing her determination to understand her condition and to overcome it. Maddie won the hospital’s Isadore Wise Scholarship in 2017.
Martin’s kidney function had dropped to 17 percent just prior to the June 24 surgery. She was exhausted, slept 10 to 12 hours at night, took three-hour naps and couldn’t eat.
The transplant surgery lasted 2½ hours. McManaway’s kidney and some attached blood vessels were inserted into Martin outside her abdominal cavity beneath her right hip bone, which protects it. Her failed kidneys remain.
Her new kidney started working “better than expected,” Martin said, producing "a ton of urine" almost immediately, her surgeon, Dr. Oscar Serrano said. Her lab results soared. An aspiring nurse, Martin talked incessantly with the hospital nurses about her condition, recovery and any topic.
The two patients recovered on the same hospital floor. They walked together up and down the hallways, rolling their IV bottle hangers along the way. When McManaway proved she could walk 1½ miles, she was discharged June 25 — the day after surgery. She was cleared to drive two weeks later.
Martin was discharged June 27, her new kidney functioning at her best level in 15 years, she said. Her kidney function reached 97 percent a week later.
“She’s doing pretty well,” Silva said. “We’ve had lots of visits. The post-op period is a very difficult time, and they have to be monitored very closely. It takes lots of medications and a commitment. She’s done a great job.”
Martin is house-bound this summer to avoid the chance of infection while on immuno-suppression drugs. She’ll take online classes at Central in fall. She can’t clean out the family cat’s litter box — “I got out of that one,” she joked — and she can’t take care of the two mini horses.
Martin plans to return to CCSU next spring with an off-campus apartment to reduce the chance of infection. She also can’t eat at buffet settings anywhere.
“I’ve been super bored in the house,” Martin said. She’s doing rug latch hooking and has become “a genealogy nerd,” researching family ancestry. She has weekly appointments with Silva, and her recovery is "uneventful" thus far.
A mission to raise awareness
Martin and McManaway have a physical bond for the rest of their lives, but the entire experience also has given both a shared new mission to raise awareness about kidney disease and the importance of becoming an organ donor.
Martin recites statistics from memory and puts them in her blog.
“I was fortunate enough to receive a kidney before having to go on dialysis," Martin wrote in a recent blog post. "Not all are that fortunate. On average in Connecticut, it takes 6-8 years to get a kidney. In the US, someone is added to the kidney transplant list EVERY 14 MINUTES. Each DAY, 13 people die waiting for a kidney transplant. In 2014, 4,761 people died waiting for a transplant, and another 3,668 people became too sick to receive one. As far as all organ donation statistics go (not just kidney), there are more than 113,000 men, women, and children on the national waiting list as of January 2019. For all of the organs, 20 people die each DAY waiting for a transplant. 95% of US adults support organ donation, but only 58% are actually signed up as donors. ONE deceased donor could save the lives of at least EIGHT people and can improve the lives of up to FIFTY others. So what can you do to help? REGISTER TO BE AN ORGAN DONOR, TALK TO YOUR FAMILY ABOUT YOUR WISHES, RESEARCH ORGAN DONATION, CONSIDER BEING A LIVING ORGAN DONOR, AND PLEASE SHARE MY STORY TO SPREAD AWARENESS!!”
Silva said Connecticut Children’s sends all its pediatric kidney transplant patients to Hartford Hospital, about five to seven per year, ranging in age from 2 to 26. She said Martin had a big benefit with a “pre-emptive donation” of a kidney from a living donor.
“People who have a living donor, they tend to do very well,” Silva said. “Some kids don’t have a match or somebody who is able to donate, and we do deceased donors. Those are a little bit more difficult.”
Dr. Serrano, kidney surgeon at Hartford Hospital, said Martin was one of the fortunate patients, receiving a living kidney donation without ever needing to go on dialysis.
There are about 1,100 patients in Connecticut on the kidney waiting list, the majority of them on dialysis. The average wait time is six to seven years. Serrano said hundreds of potential living donors are screened each year, and only about one in 10 are approved based on a host of medical tests, including blood work, kidney, lung and heart screenings.
McManaway said the screening to become a living donor is non-invasive and easy. She said she never considered being a donor in the past, but she couldn’t ignore Martin’s dire need.
McManaway and Martin urge people to consider becoming organ donors and to talk to family members to learn their wishes for when they die.
“How many people don’t know their families’ wishes after death?” McManaway said.
Hartford Hospital recently established the "Donor Champion Program" at its Center for Living Donation to educate the public on the need for kidney donors and how people can be screened for their potential suitability for donations. Programs are held in English and Spanish.
"A lot of people don’t know you can donate a kidney," Serrano said Friday. "A lot of people don’t know you can help so many people by becoming a living donor."
Martin hopes to speak at Three Rivers Community College, at NFA and other venues to spread the word about organ donation.
“I just feel it’s part of my mission,” Martin said. “It really is the perfect timing. ... It’s important to get this out there. There’s so many myths about organ donating. This is how I get to show my gratitude.”
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