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An incredible bond: Lawrence County man's altruistic gift changed Beaver Falls woman's life
Beaver County Times - 11/30/2018
Nov. 30--Every day was a slog. Perpetually tired, she could barely make it through the day. Her complexion wan, weight down to 100 pounds, it was obvious Colleen McGovern Sempf was ill.
Still, she maintained a full-time job as an instructional support aide at McGuire Memorial, a care facility in Daugherty Township serving people with intellectual and physical disabilities. And was single mom to a teenager.
Three times a week -- Monday, Wednesday and Friday -- when her shift ended at 3 p.m., Sempf drove nearly 10 miles to a dialysis clinic in Baden where for three to four hours she was tethered to tubes and hooked to a machine that substituted for her kidneys, the bean-shaped organs just below the ribs that filter waste from blood.
And then she'd drive home to Beaver Falls and collapse.
At 12, doctors diagnosed Sempf with Type 1 or juvenile diabetes, a condition in which the pancreas doesn't make insulin -- a hormone that helps cells absorb sugar for energy.
"I had a lot of complications," the now 50-year-old said. "I was losing my eyesight."
Too much sugar in her blood caused tiny blood vessels in the retina -- the light-sensitive lining in the back of the eyes -- to leak causing tissue to swell compromising vision. Called diabetic retinopathy, it can lead to blindness if untreated.
Sempf underwent numerous laser surgeries, but was told "at some point, lasers would not help my eyesight."
At 28, she had the first of three cadaveric pancreas transplants, an attempt to treat and potentially cure her diabetes. The donor was an 18-year-old who died in a car accident.
Patients receiving pancreas transplants can expect the organ to last 10 years or more, on average, according to Johns Hopkins Medicine.
Sempf's lasted about five.
She wore an insulin pump for a year to control her diabetes until another donor became available -- a 40-year-old who also died in a car accident. Her most recent pancreas transplant was 2014.
In 2007, Sempf went into renal failure and wound up on dialysis.
"It was very difficult," she said. "I was a single mom at that time. It was a struggle."
According to the National Kidney Foundation, average life expectancy on dialysis is five to 10 years, but many people have lived well for 20 or 30 years.
Her best option was a kidney transplant.
Sempf, one of eight children, has four brothers and three sisters, but "all suffer medical problems," she said. An older brother died at 44. He, too, was diabetic. A sister has multiple sclerosis. Two sisters have Hashimoto's disease, an autoimmune disorder that causes thyroid disease.
None of her relatives was a suitable match.
Sempf was placed on a national transplant waiting list for a cadaveric kidney.
"I was looking at anywhere from two to four years before an organ would become available," she said. "It was discouraging. It definitely was. But I'm the kind of person you live the best life you can."
And then she got a phone call at work that spring that would change her life.
"I was just like overwhelmed," she said.
'Urge to help'
Eleven years ago, Robert Rice, now 48, of West Pittsburg in Lawrence County, worked as an activities assistant at Southwestern Veterans Center in Pittsburgh'sHighland Park that provides health care and related services to veterans who are disabled, chronically ill or in need of specialized care.
Every day he saw patients on dialysis.
"I would see them come back from dialysis like three times a week and saw how they were very drained. They looked very sickly. I just thought maybe I could help somebody out there," he said.
One veteran he befriended "wasn't looking too good at all. I decided then and there to look into kidney donation."
After initial research, Rice realized he's healthy and could live with one kidney.
"I just had the urge to help somebody because of what I saw every day at work," he said.
Coincidentally, one night while hosting bingo, a deputy from the American Legion visited and told him she awaited a donor kidney. Rice told her about his idea to donate a kidney. She directed him to the Center for Organ Recovery and Education to begin the process.
Currently, 95,303 people in the United States are on a waiting list for a kidney transplant. Of all organs, kidneys, by far, are the most transplanted. Livers, at 13,619, rank second.
On average, 3,000 new patients are added to the wait list every month, according to the National Kidney Foundation. And 13 people die each day waiting.
In 2014, for example, 4,761 patients died waiting and another 3,668 people became too sick to undergo a transplant, NKF said.
In about 60 percent of kidney transplants, organs come from someone who has died -- "after the family's consent or donor consent card is verified," according to UPMC Transplant Services in Pittsburgh.
But there aren't enough organs to meet critical need.
Living-donor kidney transplants -- where organs come from a living person -- help overcome the shortage and save more lives, UPMC said, increasing the number of kidneys available for transplant.
Usually, these donors have a connection to the recipient -- blood relatives, spouses, friends -- and the transplants are called "directed" donations.
Recently, however, some kidneys come from strangers -- so called nondirected altruistic kidney donors -- a rare and extraordinary gift.
To date nationally, 64 percent of living-donor kidney transplants were directed donations between biologically related pairs; 34 percent were directed donations between people who were not biologically related; and less than 2 percent were altruistic nondirected donations, according to data provided by Katelynn Metz, communications and marketing coordinator for the Center for Organ Recovery and Marketing.
Rice falls into the latter category -- one of the ultimate do-gooders.
Across the country, there have been 2,334 altruistic kidney donations since 1988, Metz said. Of those, 21 have been performed at UPMC Presbyterian/Montefiore, the first in 2002. Rice's and Sempf's surgeries were one of two done in 2007.
The depth of Rice's compassion is inspiring, but the thought of undergoing surgery and putting oneself at risk for a total stranger is nearly incomprehensible.
Decades ago, transplant centers turned away altruistic donors "concerned that anyone who wished to donate one of their organs to an unknown individual may harbor underlying psychiatric disease or those donors would request monetary payment from either the recipient or the hospital," according to an article published in 2016 in Journal of Kidney.
Rice understands. His own family questioned his decision. His brothers thought he was crazed.
"They were against it. 'What are you doing?'" they asked.
"I talked it over with my wife and all that," Rice said. At first, she wasn't sure, but was big-time supportive after I told her what I saw every day on a daily basis. She knew what kind of person I was."
Sempf was even more astounded when she received the phone call from her transplant coordinator telling her a stranger wanted to part with one of his kidneys.
"I was like are you kidding me? I couldn't believe it."
'It worked so perfect'
Surgery was set for June 20, 2007, at UPMC Presbyterian/Montefiore.
But first, about a month prior, Rice underwent a battery of tests -- 34 in all, he said.
"There was tons of testing before, of course. Lots of CAT scans, MRIs, ultrasound, blood work tests, stress tests, meet with psychiatrists, psychologists, social workers, dietitians, surgeons, transplant coordinator."
Rice's blood pressure was slightly elevated; doctors wanted him to lose 15 to 20 pounds. Rice said he lost 34 -- "basically it's like getting training for surgery."
The wait was agonizing for Sempf.
"Every day it was like 'What's going to happen? Who can do this? Who can be that selfless to give up an organ for a stranger? We didn't know each other. Is he going to change his mind? What's going to happen? How is this going to go?'"
Operations began early in the morning in separate surgical suites.
Rice's kidney was removed laparoscopically -- minimally invasive surgery in which three small incisions were made in his lower left abdomen. He was back at work within a month and said other than some expected abdominal pain, he was fine.
Removal of Sempf's kidney was more involved -- about a three-hour procedure -- leaving Sempf with a semicircular scar, a "bikini cut," she said.
"They took me in, put me under, next thing I know woke up and had a kidney," said Sempf.
"My kidney kicked right in," Rice said.
The organ began producing urine immediately. Her kidney function levels returned to normal.
"It worked so perfect," Rice said. "It's her kidney now. I'm still doing good. I'm happy about that."
Sempf was up and moving within a day.
"No more dialysis," she rejoiced. "I felt wonderful. My skin went back to a pink color. I just felt -- I don't know how to express it. I felt alive. Like I slept forever and woke up and rejuvenated."
Reflecting on the experience, Rice said "it's probably the greatest thing I've ever done -- other than getting married. I better say that 'cause I'll get killed from the wife. It's one of the best things I've ever done. It was."
All of Rice's medical costs were picked up by Sempf's insurance.
Three days after surgery, Rice and Sempf met for the first time.
Rice's wife was there; Sempf's then-fiance, Tim, and her parents.
It was emotional -- hugs and tears.
"I asked him why -- why would you want to do this, thank you, but why? Still to this day we talk about it. It's amazing someone would want to do that."
"She was down to her last hope," Rice said, adding that her family told him he was "part of their clan now, part of their family."
They've remained friends ever since, Sempf said, keeping in touch regularly.
"It's just a bond we have," Rice said. "It was a heck of a great experience to meet her and get to know her family."
Sempf invited Rice and his wife, Tammy, to her second marriage Dec. 31, 2008.
Thanksgiving Eve, the couples planned to get together to listen to a band, but that's the night Sempf adopted a puppy -- JuJu, an 8-week-old Chinese crested -- from the same breeder from which Rice got his dog.
Sempf now works as an outreach specialist in the Ellwood City office of State Rep. Aaron Bernstine. Rice is retired, but volunteers for CORE and church bingos.
And in August, he once again went to be evaluated to be an altruistic liver lobe donor for a best friend's daughter.
"It turned out we weren't a match," Rice said, but he was present to support the family during surgery.
"It was pretty wild for me because I got to see what it's like on the other side -- what Colleen went through and her family went through wondering who this guy is and hope he doesn't back out."
Rice also regularly donates blood, plasma and platelets.
Both speak to groups about the importance of organ donation and both are registered as tissue and organ donors.
"Spread the word," Rice said. "Definitely help another life. People are in dire need out there. I want to tell people to help out. Sign up to be an organ donor. Try to save another person. Life is so precious."
Metz said theirs is "an incredible story of giving. It's really great," and one that even though occurred more than 10 years ago, is worth retelling during this season of thanks and giving.
"I think this really outlines what true giving is and the effect somebody can have on another person's life," she said. "The likelihood of a purely outright, altruistic donation -- those are few and far between. He's a hero."
"Oh, gosh, yeah," Sempf said.
"Tell my wife," Rice joked.
"She knows," Sempf said. "Tammy is an amazing woman, too, to let him do this."
"We wish there were more Roberts around," Metz said. "How many people could be saved if there were more of him in the world?"
"That's true," Sempf said. "I was one."
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