INDIANAPOLIS
Once an impossible treatment tool for doctors, then a rare and complicated solution, kidney transplants have become almost commonplace over recent decades, counted in the thousands across the United States.
Seymour’s Allyson Brock, 27, was one of those patients, but the story of her transplant over the last 11½ years, from sickness to health, and her current daily life is a unique journey in the history of the life-saving medical marvel.
In an extraordinary twist, Brock’s life path has transformed her from longtime patient at Riley Hospital for Children at Indiana University Health in Indianapolis to full-time nurse at Riley whose bedside responsibilities now involve advising children with kidney ailments.
And she works with the same surgeon who operated on her and the same kidney doctor who followed her case. When Brock shares, young people don’t tune out. They listen. It is somewhat akin to having Babe Ruth as a personal hitting coach.
Brock was diagnosed with congenital kidney dysplasia when she was 5. She was born with small kidneys that did not develop properly with her growth. She and her parents were told she almost certainly would need a kidney transplant some day. She was 15 when the day came.
For years, the disease hovered, real in the mind but not so heavy-handed on her shoulders, Brock still running cross country and playing basketball at Immanuel Lutheran School and playing tennis for Seymour High School.
Brock was smart in storing water in her system practically like a camel and having regular checkups at Riley often enough she could probably find her way there with eyes closed.
But eventually, her kidneys still shifted to a now-we’ve-got-to-do-something-about-it stage. Brock was running low on energy more often. She became dehydrated too often. She lost weight.
“My freshman year,” Brock said of her early high school days, “I got pretty sick.”
Sick enough doctors informed the Brocks they needed to search for a kidney transplant donor.
The Brocks had spent a decade not quite in denial but a step removed from potential serious reality.
“It was always out there,” said Robert Brock, Ally’s father, who is a Seymour school bus driver and a farmer. “But it was always, ‘That’s down the road.’”
Until it wasn’t and “her kidneys were kind of going downhill,” he said.
Immediate family, Robert, mother Jill, a nurse, and brother Andrew, a Seymour accountant now who is two years older, were the likely best donor candidates. Then it was determined mom was the best match.
Through the night of Feb. 24, 2010, there was a lot of praying in the Brock household, and on Feb. 25, Jill and Ally each had surgery. Jill gave birth to Ally 15 years earlier. Now, Jill participated in a rebirth.
Fortunate to have a family donor
Ally has blonde hair and blue eyes and is built in trim, athletic fashion. She does not become emotional reliving the years kidney disease shaped her childhood or the period surrounding her operation and recovery.
Life was managed with medication, and while her friends knew she had a kidney problem, it wasn’t as if Brock was sidelined from extracurricular activities. It was about being as normal as normal is.
“I didn’t really talk about it,” Brock said while sitting in an open foyer area at Riley near the front door. “I worked hard in school.”
Of course, she was the only one in her peer group with adult doctor pals from frequent visits.
“Since I was 5, I’d been going to appointments at Riley,” Brock said.
When doctors reacted to blood in Ally’s urine and other test readings, raising the transplant issue, relatives wondered who might best help.
“I just prayed it would be someone in the family when that day came,” Jill said. “The easiest, best match for a donor is a family member.”
Jill underwent blood work preparation and through DNA markers was deemed a match. Matches and kidney availability are not there for everyone.
Dr. William Goggins, 55, who performed Ally’s transplant surgery, said he has performed between 2,700 and 2,800 kidney transplant operations over 21 years. There were about 21,000 kidney transplants in the United States in 2018 “which is wonderful,” he said, but the waiting list is 100,000 deep.
The national statistics were reported by The Kidney Project, associated with the University of California San Francisco. The organization also reports 750,000 Americans and 2 million people worldwide are affected by kidney failure annually with the number growing 8% a year.
The first kidney transplant was performed in 1954 by Dr. Joseph Murray and Dr. David Hume at Brigham Hospital in Boston. Murray won a Nobel Prize in medicine for a kidney transplant between twins. Goggins trained under Murray.
The waiting list has expanded dramatically. Initially, no one was considered a transplant candidate who was over 55, but that restriction is no longer in place. Also, the incidence of high blood pressure and diabetes has mushroomed, contributing to the need.
In children, said Dr. Corina Nailescu, Riley’s director of pediatric transplantation since just after Brock’s operation, the source of trouble is more often congenital, as Ally’s case was, rather than an offshoot of high blood pressure or diabetes.
“They were functioning to some degree,” Nailescu said of Brock’s kidneys, “but it got to a point where they were not functioning to do the job.”
That job is to remove waste and extra water from the body and maintain sodium, potassium and calcium balance.
In situations like Brock’s, the patient has three options when deterioration sets in: A transplant, dialysis treatments or “do nothing, which leads to death,” Nailescu said. “The best chance for a normal life is as she did.”
The way the Brock family viewed a transplant for Ally was a symbol of opportunity for a long-term normalcy rather than a dreaded medical procedure.
“We knew there was hope,” Robert said. “We thought, ‘At least we have a chance.’”
They did not necessarily think of the operation as frightening.
“It was scary when we first had to go to Riley,” Robert said of earlier. “I think the unknown was.”
The transplant was better understood. When it was concluded Ally had to undergo transplant surgery, she said, “I was lucky. Not everyone can have a family member donate an organ.”
Battling back
Ally and Jill’s surgeries were simultaneous, and mom seemed to have more pain and discomfort, though Ally was hospitalized for five days.
A typical care plan for young kidney transplant patients, Nailescu said, starts with a day or two in intensive care, the first gauging of whether the body is accepting the foreign organ.
“That is a very critical time,” she said.
Then the patient is transferred to a regular floor and generally released within 10 days. Follow-up visits as outpatients are next, a couple of times a week. The pace then slows to every several months but always continues.
“Forever,” Nailescu said.
However, as Nailescu put it, “Unfortunately a transplant is not forever.” This is especially true for a young individual. The lifespan of a replacement kidney is estimated at 30 years. That means Brock could need another transplant later in life.
“Sometimes, kidneys over the course of time just peter out,” Goggins said.
That is a daunting prospect, a future potential donor could be brother Andrew, but that is not something Ally dwells on.
After Ally and Jill returned home in Seymour, Robert, now 61, was the on-the-premises primary caregiver for both with some help from relatives. Fellow members of St. Paul Lutheran Church in Jonesville sent flowers and brought food. Robert said the family had both faith in God and faith in Riley personnel.
“We were in such great hands,” he said.
Jill, now 53, was confident, too.
“I don’t think we ever had any negative thoughts that it wouldn’t work out,” she said. “There were lots of prayers. Afterwards, they were hallelujah prayers, prayers of thanksgiving.”
Jill indicated there was no mental wrestling match over giving a kidney to her daughter.
“I don’t know of any of our friends with a child who wouldn’t do it,” she said.
Recuperation for three months between February and May involved up-and-down comfort levels, but she does not recall having too much physical pain. Andrew was a home tutor at times during home confinement.
“I watched a lot of movies,” she said.
Ally the tennis player regained her stroke and felt a boost in energy from the new kidney. She remembers to carry drinking water just about everywhere. It drives dad crazy she likes to sip room-temperature H2O, though, instead of ice water.
Health care career
Nursing was not Ally’s long-term career plan.
As a little girl, she did not fixate on becoming a cowgirl or teacher or nuclear scientist when she grew up. Didn’t think much about it, but by high school, she began believing becoming a physical therapist might be cool.
Jill has been a public health nurse for Jackson County and the state of Indiana, but after Ally had the transplant, she was wary about the idea of Ally following in her footsteps. Jill worried about the transmission of infections to a compromised immune system and God-forbid if there was some kind of pandemic — sure enough the world then actually experienced one.
Ally was aware of the threat of organ rejection.
“You’re never technically in the clear,” she said.
She takes pills and has ongoing checkups, but she ultimately decided she truly did want to become a nurse, earning two degrees from the University of Indianapolis. During an internship at Riley, she began crossing paths with Nailescu and was deployed to work with young kidney patients.
“She was always very open about her condition,” Nailescu said. “She would say, ‘Hey, I used to be her patient.’”
Ally could say she had been there, offer a real-life scenario in urging young people to take their medicine and could hold herself up of how even if you have kidney disease, you can have a normal life.
Ally upgraded from registered nurse to nurse practitioner. It was Nailescu who urged Ally and hospital management to hire her for this kind of job after she finished her schooling.
“I have no words to describe it,” Nailescu said of watching this one-time teen patient transition to a medical professional helping the doctors who helped her while helping younger versions of herself. “It has just brightened my life. She really is in the right place. When she talks to our patients, boy do they listen.”
Nailescu said she has never heard of a similar situation and definitely not personally.
“Not even close,” she said. “It’s something very unique in my life.”
Nailescu even thinks Brock should be urged to take the next step and become a doctor, but Brock says no way to more schooling.
Goggins said he tries to follow his young kidney transplants through Facebook as they age, taking pride in how they live normal lives after youthful health traumas. In Ally’s case, the feelings are multiplied because now, he works alongside her and she helps save lives from the same affliction that could have claimed hers.
“It’s actually hard to describe how wonderful it is,” Goggins said. “It’s one of the great joys of my life.”
Knowing her personal history and seeing Brock interact with Riley’s kidney patients is special to watch, he said.
“She is a role model,” Goggins said. “She has a unique ability to connect with the pediatric patient and teenager. She has unique qualifications. Many of them just want to be normal.”
Brock’s normal is a one-of-a-kind.
Celebrating together to remember
Ally and her parents don’t seem like people who easily make a fuss. But the shared lifetime-long experience of Ally and her kidneys, her transplant operation, mom donating an organ, those many hours of driving Interstate 65 to Riley all add up to a family connection that was at times an ordeal, yet turned into mutual affirmation of life.
So Feb. 25 has become a family anniversary. The Brocks started a tradition. Once a year, on the date of Ally’s transplant surgery or on a day near it on the calendar, they take a time out and adjourn for a steak dinner together in Seymour, Indianapolis or Columbus, a place nice enough where the place setting might have three forks.
“We celebrate that more than a birthday,” Ally said. “Oh yeah, it definitely signifies something special.”
It is actually the birthday of Ally’s kidney. Another year gone by. Another year good.