For the first time in years, the pain is gone.
Kelly Kinkade had lived for the past eight years with a deteriorating liver. The condition robbed her of energy, shredded her memory and turned every aspect of her life upside down. The Greenwood resident lived in a perpetual state of sickness, waiting for a liver transplant.
But through the generosity of her cousin, Paul Stringfield, and a newly revived living liver donation program at IU Health, each day is like a new experience.
“I didn’t even remember what it felt like not being sick. To feel well again was so foreign to me,” Kinkade said.
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After nearly a decade wait, she has received a life-altering liver transplant. Stringfield offered to be a living donor for her, and in late July, they went through with the procedure.
Without the generosity and selfless offer from her cousin, Kinkade would still be suffering from fatigue, memory loss and other effects of her liver shutting down.
“There’s never going to be enough words to say or things to do to thank him for this,” she said.
But for Stringfield, offering to be an organ donor was a simple decision.
“I knew she needed one for a very long time. I was in a perfect position to do it; I was healthy enough, and I thought I’d be the best person for it,” the 23-year-old Indianapolis resident said.
In doing so, they helped usher in the opportunity for living organ donation in Indiana. They became the first patients to go through IU Health’s recently re-established living donor liver program, and their success has proven the impact such a program can have for those in need of a liver transplant.
“We have a solid foundation, which is key for a successful program. It has really added a huge opportunity for Hoosiers that we can offer this service,” said Dr. Chandrashekhar A. Kubal, surgical director of the IU Health adult liver transplant program.
Kinkade, 34, started having problems with her liver in 2011. She felt fatigued and tired easily, feelings that she initially tried to ignore. But the symptoms got worse. In the matter of a few months, she was getting nauseous, couldn’t keep meals down and started losing weight. Soon, her skin and eyes turned a sickly shade of yellow, which forced her to act.
Doctors tested for and eventually dismissed diagnoses ranging from gallbladder disease to acid reflux disease. When a blood test revealed that Kinkade’s liver enzyme numbers were radically off, they narrowed it down to a liver problem.
She was diagnosed with auto-immune hepatitis, in which her immune system had decided her liver was a threat to her body and was attacking it as if it were a bacteria or virus. Her doctor informed her her liver was already severely damaged, and started her on autoimmune medications and steroids.
The jumble of medications had detrimental side effects. Kinkade’s short-term memory and decision-making skills were in tatters, a condition called hepatic encephalopathy. She forgot the names of animals and pets that her family owned. She had to scale back — and in some cases step away from — her career as an attorney.
“I literally have no memory from that part of my life,” she said.
The disease robbed her of her appetite, and because her body couldn’t get rid of toxins the normal way, it tried to force it out through the pores in her skin, causing insufferable itching. She would sleep during the day and be awake all night long. Fatigue was a permanent part of her life.
“People ask me what it felt like to be sick, and I tell them: It was like waking up with the flu every day,” she said.
Though the situation had stabilized to the point where it was no longer a life-and-death situation, Kinkade would still need a liver transplant. But because the autoimmune medication she was taking had stabilized her liver function, she was far down on the list of potential recipients to get a liver from a deceased donor — the most common type of transplant organs used.
Kinkade’s best option was a living transplant. No Indiana hospitals had a living donor program for liver transplants at the time, so she traveled to Chicago for treatment at Northwestern Medicine.
About 10 relatives and close friends had been tested to be potential donors. None were a match, and her hepatic encephalopathy was getting worse.
“I got to the point where I thought I couldn’t keep doing this,” she said. “We had to do something else, because this wasn’t OK.”
Kinkade sought out other treatment options, this time at the Mayo Clinic. Doctors presented her with positive news — they thought they could reverse her condition through a complicated procedure that would allow blood to move more easily through her liver.
“They told me it was a temporary fix, and I’d probably have to come back in six months to a year to have it redone,” she said. “It would give me some more time.”
But Kinkade’s hepatic encephalopathy returned. Her insurance had changed, and she could no longer receive treatment at the Mayo Clinic. She was referred to IU Health, where surgeons again rerouted blood through her liver in an attempt to improve her condition.
Doctors told her that it had been an increasingly difficult procedure, though, and they were unsure how viable it would be to do it again.
“There were only so many times they could do this, and then they didn’t have anything to work with,” Kinkade said.
Kinkade was discouraged and felt helpless. She didn’t know where to turn next.
Her doctor at IU Health offered some hope. He told her that the health system was considering bringing back a living donor liver transplant program, and asked her to stay with IU Health for about six months.
“I would rather do it here anyway, simply because I’d likely have a donor here, this is where I’m from, my family all lives in Greenwood and that’s where I was staying,” she said.
IU Health had previously had a living liver donation program in 2000, and completed three living liver transplants at that time, Kubal said. But the hospital had ceased those types of transplants.
The process of providing patients with a liver transplant from a deceased donor was well-established and working well. But changes in the requirements for patients to receive a liver from a deceased donor forced IU Health to re-examine a living donor program.
“The way livers from deceased donors are allocated has changed. What has happened has put Hoosiers at a huge disadvantage. Patients with liver failure in Indiana had to be very, very sick before they could get a liver from a deceased donor,” Kubal said. “We knew that this was coming and would make it more difficult for our patients.”
Kinkade was the type of patient who would be hurt by these new changes. To get a liver from a donor who has died, hospitals use a complex formula called the Meld score. Looking at liver enzymes, bile levels and kidney function, transplant surgeons can determine who is the most in need of a new liver.
“In her case, she was feeling tired and had liver failure and needed a transplant. But because her score was low, she was not going to get a donor at all,” Kubal said.
IU Health approved the living donor program, allowing it to move forward, and the hospital became certified to conduct the transplants. Surgeons had to be trained to work on living donors, going through hours and hours of education, Kubal said.
By early 2020, the living liver transplant program was in place. Doctors started testing Kinkade for the program. Her surgeon, Dr. Marco Lacerda, assessed her condition and her symptoms, and told her that though a second opinion would be necessary, she had suffered long enough and would be an ideal candidate for a transplant.
“For the first time in a very long time, someone gets it,” she said. “Yes, I could sit here and talk with you and seem fine, but I’ve been doing this for way too long. I didn’t want to do it anymore.”
Kinkade started reaching out to other family members about being potential donors. Stringfield immediately stepped forward.
He had to go through a battery of tests, from CT scans to x-rays to blood work, to ensure he was healthy enough to donate and his liver would match with Kinkade. Stringfield completed all the tests, and it was looking more and more possible that he would be a match and be healthy enough to donate.
“It was exciting. I was ready to do it,” he said.
Then the coronavirus pandemic shut down the entire process.
“It was very hard. I tried very hard to keep everything in perspective,” Kinkade said. “I had to stay off of Facebook, because every time someone posted about their vacation getting canceled, it made me mad.”
The pandemic ended elective surgeries until May, and after completing the final tests, doctors were ready to schedule a date for Kinkade’s surgery.
The transplant was scheduled for July 20, and lasted several hours. They were the first in 20 years to go through the living liver transplant surgery at IU Health.
“It was the first for our current team,” Kubal said. “We have done one other transplant since then, and in both cases, both the patients and the donors are doing very well.”
Kinkade remained in the hospital for nine days following the surgery, as her body healed and doctors ensured she wasn’t rejecting the liver. She was required to have follow-up appointments weekly for about six weeks, but after two appointments, she was doing well enough her doctors told her she didn’t need to continue.
Two weeks after the operation, she was told she could go back to work, drive and start living her life again.
Stringfield was discharged from the hospital after just five days.
“Recovery was difficult for the first couple weeks, but after the second week, I feel great. I’m fine now, back to normal and pretty much doing anything I’d want to,” he said.
Though she is still recovering from the major surgery, Kinkade is regaining glimpses of her life she thought had been lost. She has resumed her career as a trial attorney in Indianapolis, and though the pandemic had delayed most trials, she is on standby.
She also realizes how important it was that Indiana now has a living liver donor program, and how fortunate she was to help usher it back in.
“This is going to drastically change the lives of people who need a liver transplant. There are people living in this state whose insurance won’t cover them going to one of the other centers and are looking at a 10- or 20-year wait, just getting progressively sicker,” she said. “Now they have an option where they don’t have to be on death’s door.”
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Living Liver Donation
What: Living liver transplantation involves removing a portion of a donor’s liver and using it to replace a diseased liver in the recipient. While a living liver donor faces the typical risks of surgery, the liver can regenerate and return to full function within a month.
Why: When someone has late-stage liver disease, liver failure and death are real possibilities when medical treatment is no longer effective. Liver transplantation is the patient’s only option.
Who: IU Health offers the only living liver transplantation program in Indiana
Types of living donors:
- Related — Blood relatives of transplant candidates, including parents, children (over 18 years old), brothers, sisters, half brothers and sisters, aunts, uncles, cousins, nieces and nephews.
- Non-Related — Donors emotionally close to transplant candidates, but not related by blood, including spouses, in-law relatives, close friends, coworkers, neighbors or other acquaintances.
- Non-Directed — Donors not related to or known by the recipient, but who make a decision to donate purely out of unselfish motives. This type of donor is commonly referred to as an anonymous or altruistic donor.
Requirements: In general, donors must be healthy, in good physical and mental health, and between 18-55 years of age to be a living donor. You will complete a thorough medical and psychosocial evaluation and you will be fully informed of the known risks involved with donation.
Process: After initial screening, living donor candidates undergo a careful and thorough evaluation process of testing and consultations to determine if they are eligible for donation. If approved for donation, a surgery date is scheduled.
Donation surgery and recovery: After the donation surgery, liver donors are monitored in the transplant intensive care unit for one to two days and then moved to the organ transplant unit. Donors will remain in the hospital as long as necessary but are usually discharged within one week after surgery. Follow-up appointments are scheduled for about two weeks and one month after donation. Donors may be able to return to work with some lifting restrictions after four to six weeks.