Woman receives double lung transplant during pandemic

CHARLESTON, W.Va. —  The phone rang at 9 a.m. Flailing about under blankets on a Sunday morning in April, Beth McCarthy missed the call.

“I woke up almost in a panic. Nobody calls first thing in the morning on Sunday,” Beth said, seated on a couch in her home in Dunbar.

Something had happened and she was afraid of what it might be.

“I think that was Pittsburgh,” she recalled telling her fiancé, Tim McCarthy.

Still half asleep, he told her, “You don’t even know.”

Then the phone rang again. It was a medical coordinator from the University of Pittsburgh Medical Center calling back.

“We have a pair of lungs for you,” he said.

The 29-year-old mother of two had been waiting 18 months for that call. She’d almost given up hope that it would ever come.

Beth was born with situs inversus, an uncommon genetic condition. Beth’s major organs are reversed from the usual position. Her heart, for example, is to the right of her chest, instead of to the left.

She also had Kartagener’s syndrome, which affects the fine, hair-like cilia of the lungs.

In most lungs, the cilia catch dust and debris, which are then coughed back up and out. Beth’s cilia are malformed and don’t release the debris as easily.

She spent much of her youth and teens in and out of hospitals. She was always more susceptible to colds and respiratory infections. She took daily nebulizer treatments and wore a percussion vest that helped shake some of the junk in her lungs loose.

Discipline and devotion to her treatment helped her lead a relatively normal and active life, but her condition could only decline over time.

She still got sick a lot, and because she’d had so many respiratory infections, she developed a condition called pseudomonas, which actually made it harder and harder for her to shake pneumonia.

Beth’s lungs were failing. She was dying.

By the time the hospital called, Beth’s lung function was down to 19%. She got winded walking across the yard. Her fiancé or her father, Tony Slack, had to carry her into sports arenas to watch football or hockey.

She couldn’t keep up with her two kids.

Beth was accepted into the national registry for a double lung transplant a little more than a year and a half ago and then was told to wait for a call that could come at any time.

It was a bittersweet proposition. For Beth to get new lungs, someone would have to no longer need them.

Insurance covered the cost of the transplant, but her father, a local actor and comedian, started a GoFundMe campaign and raised money around Charleston to help with the costs associated with recovery.

Meanwhile, Beth and Tim were trying to set a wedding date.

A year passed.

“We wanted to wait and do the wedding after the transplant, but the call never came,” she said. “I’d almost given up hope.”

They set a wedding date for July 18 and made plans to honeymoon in Jamaica. Then COVID-19 hit. People were directed to stay in their homes as much as possible. Because of her vulnerability to respiratory illnesses, Beth sequestered herself in her small home with Tim and her two children.

She barely left the house and saw her parents from across her living room.

“I didn’t hug them for two months,” she said.

The call from UPMC came April 26.

“But there was a catch,” Beth said. “They were high risk.”

High risk could mean a lot of things, she explained. It could mean that the donor had some sort of preexisting health issue, had a history of drug abuse or had been in jail.

“It could be just about anything,” Beth said.

All the coordinator could tell her was that the lungs came from a young male in Philadelphia. Whatever came with the lungs, she’d be getting that, too — and there was a pandemic to consider.

“He said he’d give me 10 minutes to think about it and call back,” Beth said.

Almost frantic, Beth called her parents, who were still asleep in bed.

April Slack said that, when she picked up the phone, she couldn’t understand what her daughter was saying at first.

“Mom, I got the call,” she told her.

“You got what?” April asked.

“I got THE call,” Beth repeated.

Beth explained about the lungs and the decision she had to make.

“You’ve got to do it,” April told her.

Beth’s father and fiancé agreed. They figured that if there was some illness, they could just treat it, too.

When the coordinator called back, Beth agreed to take the lungs.

They needed to get to Pittsburgh as soon as they could.

As they left, Beth met her 5-year-old twins at Charleston Area Medical Center’s Women and Children’s Hospital. The children had been staying with their father.

“I was really lucky,” she said. “The kids had been with me for almost two months straight because of COVID. I got so much time with them.”

She had to explain that they might not be able to see their mommy for a while. Recovery would take months, and she wouldn’t be able to leave Pittsburgh. Because of the pandemic, visits might be scarce, too.

Beth told them she loved them. Then she and Tim began the four-hour drive to Pittsburgh.

Outside of the radio and the few quick phone calls to friends, Beth said the drive was quiet.

“And short,” she said with a laugh.

And it could have been for nothing.

When Beth joined the transplant program, she’d been told that most transplant recipients had at least one dry run. They’d get the call, but when they got to the hospital, it would just be a drill.

“I never got my dry run,” she said, “so we thought this might be it.”

They arrived in the Pittsburgh hospital parking lot in the early afternoon. Beth’s parents were right behind them.

“Getting there was just a blur,” her father said.

They’d been waiting for the call, too. Following surgery, April planned to stay with her daughter in Pittsburgh as she recovered. She’d packed a bag more than a year ago.

Beth checked in, but because of the virus, the hospital would only allow one person to accompany her into the building.

Beth hugged her parents for the first time in two months and then went inside with her fiancé.

April and Tony waited in the parking lot.

“They took us back to surgery prep, and the whole hospital was a ghost town,” Beth said. “I was the only one in prep.”

Finally, she asked if this was really happening or if it was a dry run.

“It’s real,” the nurse told her. “These lungs are for you.”

Beth told hospital staff that her parents were outside. Quietly, staff sneaked them in to see her before surgery.

“My dad was very upset and trying not to cry,” she said.

Beth talked some about end-of-life matters, just in case.

“I don’t think that even hit me until we left,” Tony said.

“All I remember is telling Tim how to do laundry and how to load the dishwasher,” Beth said. “It just didn’t seem real.”

The surgical team gave her a sedative, strapped her to a table and rolled her into an operating room. The surgeon was playing a game on his phone.

Nervously, Beth asked him, “You’re good at this, right?”

The surgeon looked up, laughed, and told her, “I’m the best.”

Beth went to sleep.

Twelve hours later, she came out of surgery.

“She was just so swollen,” Tony said. “It just didn’t look like her.”

Seven liters of fluid had been pumped into Beth’s body during surgery. She was so swollen, her tongue wouldn’t stay in her mouth.

It took days for her to shed the fluid.

After she regained something like consciousness, Beth refused pain medication for the first three days in the ICU.

“I didn’t like how it made me feel,” she said. “But I couldn’t sleep.”

By the time they moved her to a regular room a few days later, she was taking pain medication but having trouble with a feeding tube, unable to sleep again and hallucinating.

Two weeks after surgery, Beth left the hospital and moved into a nearby Airbnb with her mother. They spent the next two and a half months going back and forth to doctor’s appointments and therapy sessions. Beth sometimes walked in a local park during the day but otherwise, generally, stayed in.

Beth kept in touch with her children through FaceTime on her phone. Tim, her father and her brother, Joe, would visit occasionally.

Joe bought Beth a bicycle.

“I’d walk two miles one day and then bike four miles the next,” Beth said. “Three months before, I couldn’t do any of that.”

It was exciting for Beth. Her mother was less enthusiastic.

“That scared the heck out of me,” April said. “She had ridden bikes before, but she’d been real little.”

She worried about what would happen if Beth fell.

“She’d been cut from armpit to armpit,” April said. “What if she wrecked and hit her chest? It was nerve wracking for me as a mother.”

But Beth didn’t get hurt.

In June, they made a brief trip back to Charleston. Beth had blood drawn and started the process of transferring her routine care to local medical professionals, but she also wanted to see how it felt to be back.

“We told almost nobody,” she said.

The two women returned home July 13 — with five days to go before the wedding.

While resting and recuperating in Pittsburgh, Beth and April had worked on flower arrangements for Beth’s wedding. April had sewn masks for the guests.

“I matched them with the wedding party’s outfits,” April said.

The week of the wedding was full of last-minute details, arrangements and adjustments.

Beth’s wedding gown had to be taken in. Small and slender to begin with, she’d lost a lot of weight and struggled to regain 20 pounds.

The gown didn’t fit the same, but she said it was a small thing next to being able to walk down the aisle on her own feet and then dance with her husband.

“It was the most perfect day,” she said.

Beth said she didn’t have the words to say all that she’d like to about the donor who gave her the lungs. There’s guilt at receiving this very final gift, but she knows it’s a gift and, more than anything else, she feels an immense sense of gratitude.

“But it’s hard to know that I can’t thank him,” Beth said.

Her breathing is much better. She said her lung function is at 57% and improving, but it’s something she’ll have to work at for the rest of her life through therapy, exercise and caution.

Even after COVID-19 fades, Beth will always have to wear a mask in crowds.

“I’m immunosuppressed,” Beth said. “When you have a transplant, they tell you that you’re trading one illness for another.”

There also will be regular trips to Pittsburgh for checkups and tests, expected hospital stays, and it’s likely that her body will reject the lungs more than once.

It will be a fight to keep breathing.

Because of the virus and her continuing recovery, a lot of things are on hold. The honeymoon to Jamaica is out. As a transplant patient, Beth can’t leave the country for a year. The couple is looking into rescheduling, maybe going to Florida or Hawaii.

She wants to have friends over for cookouts and dinners, be more active outdoors, work out with her husband and eventually get back to work.

“I want to go to hockey games and see football without being carried into the stadium,” she said. “There are just so many little things I want to do.”