The diamond engagement ring on Beth Slack’s left hand sparkled in the sunlight slipping past the curtains of the living room window.
“We got engaged last month,” she said, beaming.
It had been a surprise. They’d met at the Copper Pint, the bar where a mutual friend had introduced them.
“We had the entire upstairs to ourselves,” the 28-year-old said. “He’d set up dinner, roses and a surprise engagement party next door at the Boulevard Tavern.”
Her fiance, Tim McCarthy, sitting beside her on the couch, leaned back and looked at her.
“I guess he’s lucky I said yes,” she said.
Tim smiled, but he was a little tired. He’d just come from working lunch at Pies and Pints on Capitol Street and was taking it easy before his shift at UPS started later that evening.
“Every 12 hours, I’m clocking in,” he said.
It wasn’t a complaint; it was just a statement of how he made a living.
At their feet, Beth’s 31/2-year-old twins, Silas and Aubrey, played with toy cars on the floor, happily oblivious to the long, plastic tube feeding oxygen that snaked loosely from the back of the house, down the hall to the living room, up the couch to just under their mother’s nose.
It used to be that Beth could run. In her condition, she wasn’t necessarily supposed to run, but she could.
Her parents, Tony and April Slack, seated at a table inside Taylor Books, talked about their daughter. She was always tougher than she looked, even in high school.
Tony said, “She ran hard. She wouldn’t back down, even if it cost her.”
But that was 10 years ago, back when she was on the volleyball team. Now, it’s a struggle to keep up with the twins.
It’s more than a common motherly complaint. Last year, Silas ran out onto the field of a flag football game. Tim was part of an adult recreation league team and on the field. Beth chased after her boy.
She laughed and said, “And I saw stars after that.”
Beth was born with a congenital condition called situs inversus, where her major organs are reversed in a kind of mirror of what would be their normal position. Her heart is on the right side of her chest.
All of her organs work. They’re just reversed. She had other health complications — notably Kartagener’s syndrome — but situs inversus was the first issue the doctors detected.
It’s an uncommon condition — about one person in 10,000 is born this way — and while situs inversus patients sometimes have more heart problems, it’s often more of a medical curiosity than an ongoing health problem.
Beth said, “It’s like every doctor I’ve ever been to, I’m the first person like me they’ve seen.”
When she was born in 1991, the doctors had no idea. There was no reason to believe there was anything wrong.
“It was a pretty normal pregnancy,” April said.
At the time, the couple was living in South Carolina. The two met at Carver Career Center, during their senior years in high school.
April went to DuPont High School. Tony was at East Bank.
“Rivals,” Tony exclaimed.
After high school, Tony joined the Air Force. The two were married shortly after he finished his military job training, and they moved into married housing at Shaw Air Force Base.
They started a family almost immediately. The military provided medical care for April, but the X-ray technician at Shaw Air Force Base who read Beth’s first X-rays didn’t believe what he was looking at.
Tony said, “I’ll give it to them because it was someone young who read the X-rays.”
Beth’s father said when the technician got the images back, he’d held them up, saw the little “L” in the corner of the picture and assumed the film had been loaded into the camera backwards.
“He flipped it over and said, ‘Oh, that’s right. Your baby is healthy.’”
But she wasn’t. The Air Force medical technicians missed the situs inversus diagnosis, and they had no idea at all about Kartagener’s syndrome, the reason why Beth is tethered to an oxygen tank, the reason why she’s waiting for a double lung transplant.
Kartagener’s syndrome is a rare condition related to the situs inversus but affects the fine, hair-like cilia in her body, particularly the cilia in Beth’s lungs.
Tony said, “The cilia are supposed to catch the stuff that’s in the air and then you sort of cough it back up. That’s normal. With Beth, the cilia are deformed. Stuff falls in, and it just gets trapped in there.”
It’s made her susceptible to colds and respiratory infections. Through her childhood and teenage years, there were trips to respiratory specialists and periodic hospital stays. Tubes were put into each of her ears over a dozen times to help fend off fluid buildup and infection.
Growing up, Beth underwent daily nebulizer treatments at home and wore a percussion vest in the evening that shook her torso to help clear the debris built up in her lungs.
There was always medication, but it took a while to get a complete diagnosis.
Growing up different
After her father’s term of service in the Air Force was finished, the Slack family moved back to West Virginia. They got jobs and began making a life in Kanawha County.
When Beth was still a baby, April’s mother noticed she was coughing a lot — too much.
“So, we took her to Urgent Care. They took an X-ray and the technicians came out looking white,” Tony said.
They called an ambulance to take them to Women and Children’s Hospital.
“It was terrifying,” Tony said.
Beth said she had a different childhood, but a good childhood. She was close to her parents and her brother, Joe.
“Dad said I was a mutant because of how I was different,” she said. “He said I was some kind of superhero — like Batman or Superman.”
Beth’s father is a big comic book and horror/sci-fi fan. He goes to conventions, gets his picture taken with the stars of shows like “The Walking Dead” and collects memorabilia.
She had friends, too. People were, mostly, understanding.
“Mom didn’t want me to go over to sleepovers much because of all the medications I was on,” she said. “But we’d have friends over at my house.”
Beth remembered sitting in the floor of her parents’ living room wearing her percussion vest and playing games.
“I had to do that because I couldn’t run around while wearing that thing,” she said.
She had an easier time through her teens. Playing sports might have helped. At least, it helped her feel like she was normal.
Then during her senior year, Beth passed out while running. That meant another stay at the hospital. Her health improved, but it never got back to what it was before she collapsed.
After graduation, Beth went to West Virginia University, where she studied pathology with the intention of being a pathologist assistant.
“I was interested in anatomy because of the Kartagener, but I didn’t want to go into medicine,” she said.
She thought she could work in a morgue.
Beth laughed and said, “I didn’t want to hurt anyone.”
But she kept getting sick and fell behind in her studies. After two years, she moved home and went to work full time at Electric Beach tanning salon, the same place where she’d worked part-time since she was 15.
The big ask
Over the last seven years, Beth went from being a member of the staff at Electric Beach to managing a store to overseeing four locations in the Charleston area.
It was a career, but she wanted children, and her Kartagener’s syndrome made getting pregnant and carrying a child nearly impossible.
Beth could barely breathe enough for herself, let alone breathe for two.
The Slack family talked about what to do. They talked about adoption.
“But there were just so many loopholes,” she said.
Beth was afraid of adopting a child and then losing it if the mother changed her mind. Overseas adoptions were costly and getting picky.
“In China, we were told you can’t be ugly, old or sick,” April said.
And Beth was absolutely sick.
When she was a child, doctors told her parents she might only live to see 12. Beth said mortality rates for people like her were much better than that, but the outlook wasn’t very positive beyond 40.
Beth considered hiring a surrogate to carry a child for her, but that was wildly expensive, demanded a lot of trust in a stranger and she didn’t really know where to start.
April offered to do it, to carry her own grandchildren.
“I guess I just really wanted gran-babies,” she said.
It still wasn’t cheap, but April said she’d inherited some money after the deaths of her parents in 2009 and 2010. Spending the money to give her daughter children seemed like a good way to pass on that gift.
“I wanted Beth to experience being a mother,” April said.
Aubrey and Silas were born January 2015 while Beth was in the delivery room with her mother.
Things get really hard
After the twins, things settled down some. Beth and the father of her children split. He took a job in Pennsylvania and moved away, but he gets back every few weeks to see the kids.
Beth met Tim, started over and began building a home.
She said she has good days and bad days, but Tim picks up a lot of slack. He can keep up with the kids. He can chase after Silas if he runs and is there for Aubrey when she wants to dance.
“Thankfully, Tim is a great dancer,” Beth said.
Then about a year ago, Beth’s health got worse. She collapsed at work and wound up in the hospital.
Because she’d had so many respiratory infections, so many brushes with pneumonia, her lungs had developed pseudomonas, which acted as a kind of protector for pneumonia, making each bout with the illness harder to shake.
After struggling very much over the last year, both with her illness and remaining covered by Medicare, Beth was added to the regional lung transplant list in September.
On a list of 100, she’s ranked 33 for a double lung transport.
“The wait is hard,” she said. “The not knowing is hard.”
Lung transplants are not like other organ transplants. While they face the usual problems that other organ transplants have with rejections in a new body, the likelihood of rejection grows with each year.
Double lung transplant recipients can survive for over 10 years, but rejection is practically inevitable.
A high number of transplant patients don’t last five years.
To even get on the list for a lung transplant, doctors have to believe that having the transplant will significantly extend the life of the transplant recipient.
Beth’s father said, “It’s a hard thing. For my baby to get the transplant someone has to lose their life. You can’t hope for that.”
Tony said all you can hope for is that if it is someone’s time to die, they remembered to register as an organ donor.
The call for the transplant could happen at any minute, Beth said. After she gets the call, Beth has four hours to get to the hospital in Pittsburgh.
“But I only have to get to Summersville,” she said. “From Summersville, I’ll be taken by helicopter the rest of the way.”
At the hospital, it may take up to 48 hours before doctors can begin surgery, owing to the logistics of prepping for surgery and bringing in the fresh lungs.
And the first time she gets the call to go, there may not be lungs waiting on her in Pittsburgh.
“Almost everybody has at least one dry run,” Beth said. “Sometimes there are a couple.”
Once surgery is complete, Beth will need to stay in Pittsburgh for up to six months to recover and for the doctors to monitor her as an out-patient.
But after that ...
“It’s a miracle cure,” Tony said. “At least, that’s what the doctors tell us.”
Beth’s father explained that with other kinds of illnesses, like cystic fibrosis — which affects breathing — the lungs are only part of the larger problem.
Beth only needs a new set of lungs.
After she’s well, Beth said she wanted to run again or go back to the gym with Tim. She’d like to chase after her kids and, who knows? Maybe climb a mountain.
There might be a book in there somewhere.
“I keep a journal,” she said. “I’ve been keeping journals off and on since I learned to write. Maybe I could write all of this down into a story, one day.”
That would be later. Now, she has a lot to prepare for. While Beth will have the medical care she needs, her family is trying to reduce some of her financial worries.
“She has a mortgage payment to make, a car payment to make, and she’s going to have to live in an apartment in Pittsburgh for up to six months,” Tony said.
April will be with Beth to take care of her, but the two women will have to eat, pay for utilities and get back and forth to the hospital, while doctors monitor the transplant.
Heart and lungs
Beth’s fiance, Tim, works two jobs and helps with the kids. Tony said he and April don’t have that kind of money. So, they started a GoFundMe account with the modest goal of $9,000.
To help raise money for his daughter, Tony has been putting together little fundraisers around town.
Last weekend, they did a spaghetti dinner, and Tony delivered over 30 boxed spaghetti dinners to friends and supporters. Saturday at the Alban Arts Center in St. Albans, Tony and his improv comedy troupe, The Mighty Schmucks, are doing a benefit show, along with The Fearless Fools and local magician Joey Stepp to help raise money for Beth.
Tony works at Charleston Area Medical Center, but he’s also a local comedian and actor who has performed in various community productions and is a former member of the No Pants Players comedy group.
Up until her most recent hospital stay, Beth served as the emcee for The Mighty Schmucks.
People have already stepped up, Tony said.
While hanging up flyers at Adelphia Sports Bar & Grille on Capitol Street in Charleston, a restaurant where Tony sometimes hangs out to watch football, people at the bar gave him $70.
“It kind of restores your faith in humanity,” he said. “I didn’t think there were that many good people out there.”
Tony said he’s planning more car washes and dinners, whatever he can do to help his daughter.
Whatever money they raise won’t go to medical bills but will help to cover expenses while she recovers from the transplant.
Beth said she hoped to eventually go back to work. About half of lung transplant recipients do, but it’s a tough road ahead. Beth’s parents believe she can get through this. She’s gotten through so much, already.
“She’s never wanted to give up,” Tony said. “She’s a Wonder Woman.”
For more information, visit gofundme/beth-of-fresh-air.