Love Thy Neighbor: Donating a Second Chance
Rachelle Jeffers and Allen ‘Bud’ Mitchell went to church together but they weren’t close. That changed when she found out he would die unless he found a liver donor. That’s how Jeffers became one of a growing number of living liver donors.
Rachelle Jeffers and Allen “Bud” Mitchell
It’s one thing to take a cup of sugar from a neighbor. It’s quite another to take half her liver.
But for Allen “Bud” Mitchell, 79, it was either find a living donor — or die from liver failure. A retired Marine and military recruiter who had always stayed fit, Mitchell was shocked when he was diagnosed with non-alcoholic cirrhosis in 2016. He had little hope of surviving long enough to rise to the top of the waiting list for a liver from a deceased donor.
His wife, Ruth, spread the word all around their community in Altoona, but time and again, the couple struck out. Their friends were too old, and even their son, John, was just a few months over the 55-year age cutoff. Others were completely baffled by the idea of giving up half an organ. A kidney was one thing, they would say, knowing they had one to spare, but a liver? Even when they learned their liver would regenerate, it still seemed like a scary idea.
On a Sunday morning in May 2017, Bud was sitting in the back pew at the Fourth Street Church of God in Altoona after the service, thinking how his health had deteriorated from someone who had zoomed down the steepest slopes at Blue Knob mountain on a bodyboard. Now his abdomen was so bloated with excess fluid that he couldn’t bend over to tie his shoes.
Bud and Ruth Mitchell
As Bud pondered his mortality, Ruth was mingling in the sanctuary and ran into Rachelle Jeffers, 33, a fellow choir member. Ruth burst into tears as she talked about her husband’s failing liver and their desperate need for a donor.
Rachelle knew Ruth was merely venting, but a voice in her head was telling her to “offer” — as in, offer to give up part of her liver. But instead of pushing away the thought as a crazy whim, as many people might, she took it as a sign from God.
Rachelle turned to Bud, saying, “I’m your person.” She told him she was going to get tested to see if she was a match.
He stared incredulously at the young woman. The Mitchells knew Rachelle from church, but they hadn’t socialized much. “Why?” he thought to himself. Why would a young woman who had her life ahead of her take that risk for him?
On the drive home, Rachelle told her husband, “I may or may not have offered my liver today.” He stared at her. When she explained that she wanted to be a living donor to help save the life of another church member, he said he understood.
Dr. Abhi Humar, chief of the UPMC Division of Transplantation
Her mother, understandably protective, expressed her worries with her daughter, but Rachelle asked her not to share those concerns any more with her before surgery. She only wanted positive thoughts.
Rachelle underwent testing at UPMC, and she was deemed a good match, based on her A-negative blood that matched Bud’s, the configuration of her liver and the fact that she was young and fit. Elated by the news, she called Bud. They both choked up on the phone.
As he prepared for the nine-hour operation, Bud was racked with worries about risks to a donor 44 years younger. “What if she gets sick or dies?” he asked his wife. “Am I worth it?”
Bud wasn’t sure if he could ever be as selfless as Rachelle. “If someone asked me to do this, and I wasn’t their brother or sister, would I do it? I honestly couldn’t say yes.” He called and gave her an out. “You don’t have to do this.” She never wavered.
Just a few weeks later on June 1, 2017, the double surgery took place at UPMC Montefiore Hospital. Rachelle was calm, but Bud was nervous about both of their surgeries as they were wheeled in to the operating rooms. While one team of surgeons took out 47 percent of Rachelle’s liver, Bud’s surgeons removed his diseased tissue. As soon as the healthy lobe was attached, Bud was on his way to his second chance at life with a fully functioning liver.
At the time of his surgery, the 77-year-old was the oldest person to undergo a living-donor liver transplant at UPMC, the nation’s leader in the procedure.
photo provided by the University of Pittsburgh
Pioneering surgeon Thomas Starzl performed the first successful liver transplant at UPMC in 1981. Today, the hospital system is known as a world-class transplant center, but things have evolved — last year, 56 living-donor liver transplants took place, compared to 52 transplants using deceased donors.
In fact, UPMC doctors recommend living-donor transplants as the first option because of the long wait time for a liver from a deceased donor — usually more than a year. Nationally, 14,000 people need a liver, and 20 to 25 percent will die waiting, including many seniors like Bud.
“I liken it to having a ship full of 1,000 people, and you only have 500 life jackets,” says Dr. Abhi Humar, chief of the UPMC Division of Transplantation. “If the ship sinks, which 500 people are going to get them?”
But the procedure is still very rare nationwide — of all liver transplants in 2018, 401 were from living donors versus 7,949 from deceased donors.
There are many reasons why, says Dr. Humar, “including complexity of the procedure, concern regarding the donor and possibility of availability of a deceased donor, but one of the main reasons is likely that most patients and caregivers are misinformed or do not really know about the procedure.”
UPMC hopes to change that by encouraging patients to “get out of line,” the tagline for its new national advertising campaign.
At first glance, the TV commercial looks more like a trailer for a Dystopian sci-fi movie than a healthcare ad. It opens with grainy, black-and-white footage of a line of people that seems to go on forever. Ominous music plays as a narrator says, “If you are waiting patiently for a liver, it could cost you a life.” (The scene was shot at the David L. Lawrence Convention Center).
Then one man walks over and pulls another out of the long line. The two embrace, their faces illuminated in color, before they are shown on adjacent gurneys, holding hands on their way to the operating rooms.
Mark Fratrik, an economist at Virginia-based consulting BIA Advisory Services, says the commercial is effective in cutting through the growing number of health care ads. “There is a donor shortage. You have to get the word out,” he says. “Some people may be put off by it, but the things you saw 10 or 15 years ago that might have been out of bounds are acceptable now. We are inundated with so many messages, and this stands out.”
But Art Caplan, head of the division of medical ethics at New York University School of Medicine, says, “It is certainly a good way to make people aware of the option of living-donors. But it raised my eyebrows a little to suggest that the only place to do this is Pittsburgh. There may be a center closer to where patients live. These are extremely lucrative operations. My hunch is the competition is fierce. They are trying to draw customers the way any business would.”
Caplan, who has written about the ethics of organ transplants, doesn’t believe hospitals should advertise transplant services — or cancer care or hip replacements, for that matter — directly to the public. “Why aren’t you talking to your doctor about it? If you are learning about it from an ad campaign, you probably need a new doctor.”
Dean Walters, vice president and chief marketing officer at UPMC, counters that TV commercials and digital ads are educational for consumers as well as medical professionals. “There is a true lack of awareness about this life-saving procedure — it is presented as a last resort,” he says. “We say it should be the first choice.”
Without this kind of public awareness campaign, “the number of people dying will continue to grow,” he continues. “Of course we think patients should come here. We have the most expertise, and nobody does it better. But all centers are benefiting from this — the main thing is that people are going to research it.”
Google analytics bear this out. Leading up to the launch of the campaign, the average national monthly search for “living donor liver transplant” and related terms was 2,418. After the launch in September 2018, hits on those terms spiked to 15,000, an increase of 850 percent. UPMC is continuing the advertising campaign on digital media.
Dr. Humar says living-donor recipients tend to live longer because they’re typically healthier going into surgery than those who come to the top of the waiting list. “The sickest person gets the next liver” donated by a deceased person, he says. “The operation may be destabilizing. It just may be too difficult to recover after surgery.”
As for the people who donate while alive, UPMC does physical and psychological testing of all donors. The risk of mortality is .2 percent, though there have been no deaths at UPMC.
Rachelle and Bud attend Fourth Street Church of god in Altoona, that is where she decided to donate a portion of her liver so he could have a second chance at life.
Rachelle not only survived her six-hour surgery, but now that her liver has fully regenerated, she is training for the Pittsburgh Marathon. The only sign that she underwent the surgery is a crooked abdominal scar. During a vacation to Myrtle Beach, she snapped a selfie of herself in a sports bra and shorts. “I’m proud of that scar,” says Rachelle, who texted the photo to Bud and Ruth.
She was able to return to her job as assistant manager at Hobby Lobby in Altoona within a month. Bud’s insurance covered her operation, and although she applied for benefits under the Family and Medical Leave Act, she only needed to use her vacation and personal days.
Bud has not returned to the slopes yet, but he is able to ride his bike and take walks. “I’m getting along,” he says.
The Mitchells have stayed in close contact with Rachelle, who has become like a second daughter. They reached out to her when tragedy struck their family last year, Matthew, their 23-year-old grandson, was killed in a pedestrian accident on a busy Florida road. While he was alive, the young man had volunteered to be tested as a living donor for Bud but became so nervous about the surgery that his grandparents told him not to do it. After his death, his mother donated his organs as a tribute to his grandfather. The Mitchells wanted Rachelle, who had sacrificed for them, to learn how their family was carrying on the tradition of organ donation.
Rachelle and Bud also take their story out into the community by volunteering for the Center for Organ Recovery and Education (CORE). An ad for CORE features the duo, sitting on a bench together and smiling, along with the text: “This is what a hero looks like. Be a hero. Be an organ donor.”
After hearing their story at a CORE event, one man in the audience was inspired to start the process of becoming a living donor, says Katelynn Metz, communications and marketing coordinator for CORE. She says approaching people about being a living donor is “a super big ask.”
“Once you start the conversation, it is not as invasive as you think,” she says. “I have seen fraternity brothers, co-workers, and even friends of friends volunteer.”
UPMC offers a toolkit for people on the waiting list called the Living Donor Champion program. It helps a “champion” — a relative or friend of the patient — get the word out by using social media and other means.
Others get involved by raising awareness in creative ways, such as putting up posters at Penguins games. Metz recalls one poster, hung on the back of a truck, that said, “I need a liver.”
For Bud, that awareness came through a chance meeting at church. He is still amazed that Rachelle made the sacrifice for him. Smiling at her, Bud says, “I don’t know how long I will be around, but however long it is, I can thank my buddy here.”
Rachelle never doubted her decision. “I am not ready for a world that doesn’t have Ruth with her Bud.”