Woman makes life-saving liver donation to mother
BECKLEY, W.Va. (AP) — Two years ago, Tammy Evans planned her funeral.
At 52 years old, she wrote down her final wishes — where she would be buried, who would preach at the service, who would serve as pallbearers and what verses her two children, Shannon and Brandon Barbero, would read.
“I thought I was going to die,” she says. “I thought it was a death sentence.”
Tammy didn’t know how much time she had left, but she was one year into a diagnosis of liver disease and had little hope of receiving a life-saving transplant.
“When you get the diagnosis, it’s like a time bomb without a clock,” she says. Her doctor had told her she had patients who had lived as long as six years with the disease. “You don’t know when it’s going to go. If I got sick, I could die sooner. You just don’t know.”
So Tammy went on with life — not yet sick enough to make the transplant list — hoping to live, but preparing to die.
And then nearly three years into her diagnosis, a simple Google search and an incredible offer from her best friend changed everything.
It was in 2014 or 2015 — Tammy isn’t sure which — that she began experiencing what she would later learn were the early symptoms of liver disease.
“I was really tired, I had no appetite, I was getting headaches, my stomach was distended,” she recalls.
But Tammy, who avoided doctors at all costs — her husband Bob says, “It was like pulling healthy teeth to get her to go” — pushed through her discomfort.
That is until Halloween 2016.
Tammy was visiting Shannon, who was living in Clarksburg, when the pain became too much to ignore.
She didn’t tell her daughter what was going on when she got up and left in the middle of the night, making the 140-mile trip to the emergency room in Beckley.
But Shannon knew something was up.
“For my mom to leave my house before noon is a bad thing, and she left at 2 in the morning,” she says.
And she was right, though it would take another 11 days to find out just what was happening as Tammy was referred to a specialist for a diagnosis.
“They found some spots on the liver and thought it could be cancer,” Tammy says, adding it was something she expected, as cancer is prevalent in her family.
But instead, they found liver disease.
The diagnosis came with prescription medicines — eventually up to six — and recommendations for a balanced diet of fruits, vegetables and whole grains.
And although those would help, they would not cure or reverse the damage.
The only thing that would save Tammy’s life was a new liver, but her Model for End-Stage Liver Disease (MELD) score was too low for placement on the transplant list.
“I wasn’t sick enough,” she explains.
Within a week of that Nov. 11 appointment, Shannon packed up her life in Clarksburg and moved in with her mom and Bob, allowing Bob to continue to help care for his own ailing mother.
Shannon and Bob were the only people who knew about the diagnosis for the first two years, as Tammy says she just wanted to go about her life as normally as she could.
So she and Shannon, who quickly found a job at ResCare, made the most of their time together.
“We took some spontaneous road trips,” Shannon says. “Ended up in some crazy places. I went to my first lumberjack festival.”
“We went to festivals all across the state,” Tammy adds.
“We decided we were going to drive to waterfalls one day, which we probably should have hiked instead,” Shannon recalls, laughing. “We were up on a hill somewhere, wondering how we were going to get back down.”
“The best one, though,” Tammy says, laughing, “was that country bar we found.”
“Oh yeah,” Shannon says of the memory involving a gun-toting bartender.
“My mom’s my best friend,” Shannon adds after the two share a few seconds of laughter. “We got out and made some memories.”
And throughout the adventures — the pair makes a trip to Walmart an adventure — Tammy’s life was changing, her symptoms worsening.
“I never really cried when I found out I had the disease,” she says. “The only time I would get upset and maybe cry was when I would go to Chev’s (the nickname for her grandson, Kaleb) ball games or my granddaughter’s (Gemma) recitals or graduation from kindergarten or stuff like that. Then I would think it was maybe the last time I would get to do that with them.
“Then I would cry.”
But while searching liver disease online in August 2018, she saw a glimmer of hope.
“I had never heard of a living donor,” she says. “My doctors never mentioned anything about it. I thought either you get a liver (from a deceased person) or you die.
“I mentioned it to Shannon, and she said, ‘Let’s do it, Mom. I’ll donate.’”
West Virginia does not offer a liver transplant program of any kind, but Tammy’s research led her to the University of Pittsburgh Medical Center — which leads the nation in living donor liver transplants — just four hours away.
So they contacted UPMC and the wheels were in motion.
While in Pittsburgh, Tammy learned her liver disease was something called NASH, nonalcoholic steatohepatitis, which is liver inflammation and damage caused by a buildup of fat. It can, and did, lead to cirrhosis.
Shannon and Tammy had their own “teams” throughout the entire process, which began with testing.
“I had to have a colonoscopy, mammogram, Pap smears, ultrasounds, CAT scans, MRIs, EKGs,” Tammy says. “Every test you can think of, I’ve had.
“I had to repeat tests,” Tammy adds, explaining she had a hole in her heart that doctors were preparing to fix before it simply disappeared.
Meanwhile, Shannon underwent a battery of tests as well to determine if she could safely donate.
According to literature provided by UPMC, only about 1 in 3 people who are considered for living donation turn out to be suitable donors, for either health reasons or perhaps psychological reasons.
“The No. 1 side effect to the surgery is mental health,” Shannon explains. “The surgery can cause depression or anxiety.”
And so it was important that both Tammy and Shannon have a good support system — including caretakers — for after the surgery, as both could be in Pittsburgh for an extended time before coming home and also in need of help once there.
For Tammy, that caretaker is Bob, and for Shannon, it is her father, Rick.
But still, they waited for results and for the final decision from UPMC.
Tammy’s answer came first when she received a place on the transplant list on Jan. 15.
That meant even if Shannon didn’t qualify as her donor, Tammy was on the list to receive a liver from a deceased donor.
Then finally, on March 4, after waiting for the results of 45 separate tests, Shannon got the long-awaited news. But when she drove to her mom’s house, to share the news, Bob told her Tammy had just gone out.
“So I go to Walgreens,’” Shannon says, smiling. “Her car’s there so I know she’s inside. I go up to the register and I tell the lady everything we’ve been through and I go, ‘Could you make an announcement for me and tell Tamara Evans her liver is ready?’ I said, ‘Tell her it will be ready on April 8.’ So they made the announcement and Mom comes around the corner.”
“And then Shannon busts out crying and she’s like, ‘We got a date!’” Tammy says. “And then I bust out crying.
“We’re both crying right there at the door.”
Tammy and Shannon’s immediate families and friends gathered at Shannon’s church in Stanaford on April 7, as Shannon had planned to be baptized in the New River immediately following the service.
“We took up three pews of the church that day,” Shannon says, “and those who couldn’t make the service met us at the river. It was really great.”
Afterward, they had a family meal at Applebee’s in Summersville and made their way to Pittsburgh as Shannon and Tammy had to be at the hospital at 5 a.m. the next morning.
And just as they had been since Tammy’s diagnosis — or for all of Shannon’s 36 years — mother and daughter were side-by-side during pre-op, opening a curtain every time hospital staff attempted to shut it.
They passed the time talking and making jokes, and before they knew it, it was time to begin.
Shannon went first as her surgical team removed her gall bladder (because it was in the way) and then began removing the right lobe — 50 percent of her liver — for transport next door to her mother, whose own surgery started just minutes after hers.
After removing the entire diseased liver, Tammy’s surgical team transplanted Shannon’s right lobe and reconnected the blood vessels and bile duct.
Both Shannon’s and Tammy’s liver are expected to regenerate to 100 percent within six months.
The surgeries were quicker than expected, as Shannon’s lasted five hours and Tammy was in recovery after seven and a half hours.
“The doctors said it was one of the easiest transplants they ever did,” Shannon says, explaining it’s easier to do a transplant before a patient becomes too sick.
According to information provided by Lawrence Synett, manager of digital strategy and public relations for UPMC, that is one of the advantages to receiving a transplant from a living donor.
Synett also says living-donor livers are typically a much better medical match for the recipient as well.
Before the surgery, Tammy and Shannon were told they wouldn’t see each other until after they healed as worries for each other and possible feelings of resentment could set back the recovery process.
But after less than 24 hours in ICU, both Shannon and Tammy were taken to their own rooms, which happened to be adjoining. They have been together on and off ever since.
And though the road to recovery is long, they’ve found themselves in the fast lane.
Shannon was released from the hospital after four days and cleared to leave Pittsburgh three days later. Tammy was released a week after surgery and cleared to go home the following week, although she initially expected to remain in Pittsburgh for up to two months.
Back at home — exactly four weeks since the surgery — things continue to go just a little unplanned.
Shannon and Tammy are finding their limits are fewer than they thought they would be at this point.
“Shannon did a 2-mile walk the Sunday after she got home,” her dad, Rick, says, smiling at his daughter who is seated beside Tammy on her mom’s front porch.
“It put me in bed for two days, too,” says Shannon, who hasn’t yet been cleared to return to work.
Only the speed of their walk and some swelling in Tammy’s abdomen and feet — the fluid she received during surgery caused a temporary 50-pound weight gain — give away any indication that either of them just underwent major surgery.
That is, until they make each other laugh and one — or both — clutches her stomach in discomfort.
“You can feel it (the liver) move when you hit a bump,” Shannon says, with a shocked look on her face. “It’s really weird. And you can feel it growing.
“I don’t know if it’s growing, actually, but it feels like a little fish in there.”
Both women say they feel good.
They’re not on pain medicine — Tammy will take anti-rejection medicine for the rest of her life — and they didn’t even experience any nausea following the surgery.
Most importantly, Tammy says she’s feeling better than before she went in.
“I don’t feel as tired,” she says. “I can sleep at night instead of during the day. I haven’t been getting headaches.
“The surgeon told us I probably added another 20 years to my life,” she says, looking at her daughter.
“We got very lucky,” Shannon says.
But without that internet search, she’d still be waiting. And even on the transplant list, the odds aren’t great as 1 in 5 dies waiting.
“That’s something we want people to know,” Tammy says. “There’s options. It doesn’t have to be a death sentence.”
Tammy and Shannon joke about Tammy giving Shannon life and now Shannon giving it back.
“She’ll never let me forget it,” Tammy says.
But Shannon says she never hesitated when her mother told her about living donors.
“People tell me all the time I’m a hero, I’m great,” Shannon says, beginning to cry. “That is not what it is at all. It’s not something I want to be remembered as. I just want Mom. If I have a chance to keep my mom and my dad here, I’ll do whatever I can.”
Now she and her mom are planning their next adventure. (Tammy won’t be cleared to drive for another month or so, but Shannon is hoping to be cleared sometime in the next couple of weeks.)
And Tammy will put away her funeral arrangements.
“I’m not planning on dying,” she says. “I’m planning on living.”
Information from: The Register-Herald, http://www.register-herald.com