VALPARAISO — Inside the front door of the Kernagis household are dispensers for hand sanitizer and surgical masks.
The woman inside can't shake your hand.
Her husband, and caretaker, instructs you that if you have a cold, even the slightest hint of sniffles, to put on a mask, or better yet head back out the door. The woman in the rocking chair has even had to turn her grandkids away lately.
The couple can't have live plants in the house. The woman, an avid gardener, can't garden.
Mona Kernagis is fragile right now.
But she's alive.
The 68-year-old just got back from Cleveland, where she had her lungs swapped out with those of a dead person, whose identity she doesn't know.
During a visit the other day, she has to excuse herself a few times. She doesn't have a lot of energy. She apologizes for it.
Her husband tells her not to be silly.
"All that matters is we've got our Mona," he says.
A lengthy journey
Mona got really sick a couple of years ago, really sick. All of a sudden, she couldn't breathe.
It took a while to figure out, but she had an infection in her left lung, that skin had grown around, cavitating it.
The Kernagises traveled around the country looking for treatment options, Mona's oxygen tank in tow. They went to Chicago, to Denver, to North Carolina. Some centers turned them away, saying they couldn't do the surgery. Mona finally found a willing hospital in Ohio, at the Cleveland Clinic.
The couple moved to Cleveland last July, renting an apartment at the Transplant House, a place where people waiting for organs can live, temporarily. Five weeks later, the phone rang. The person on the line asked: Can Mona get to the hospital, and fast?
After Mona arrived, the medical team prepared her for the operation. But at the last minute, the surgeons decided the lungs were too poor in quality, that the donor had been on a ventilator for too long.
A week later, though, the Kernagises got the call again. Fifteen hours later, Mona woke up in a hospital bed, a new set of lungs under her breastplate.
Afterward, Mona was on a ventilator for 10 days. She had a tracheostomy tube in her neck for two weeks. She got pneumonia in the intensive care unit, and to be put on a machine to operate her heart and lungs.
She hallucinated, thought miniature babies were crawling on her.
Since she had been off her feet for a month, she had to relearn to walk.
"At occupational therapy, they taught me how to talk again," she says now. "Two months ago, I couldn't have finished that sentence."
A chance infection
Mona had been fighting an infection caused by mycobacterium avium complex, a type of bacteria similar to tuberculosis. She believes she might have acquired it after inhaling bird droppings. "I did a lot of gardening without gloves because I liked to feel the dirt," she says.
She figures her lungs could have been more susceptible because she had been a smoker, though she quit 20 years ago. She also had chronic obstructive pulmonary disorder.
Mona Kernagis was one of about 2,500 Americans who underwent a lung transplant in 2018. The majority of them had both lungs swapped out.
Dr. Shruti Gadre, a pulmonologist with the Cleveland Clinic, says outcomes and survival rates are better with double compared to single lung transplants.
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She noted that the median survival rate for lung transplant recipients is six years, up from 4.5 years in the early 1990s. For patients who survive the first year, that rate improves to 8.5 years.
This, Gadre says, is because surgical techniques have improved over time. Incisions are smaller, and heart lung bypass machines have largely gone away, as have the complications that came with them. Infections are rarer. Anti-rejection medications are better.
Gadre says Mona had a "rough start" right after the transplant but is now doing "quite well."
"She's off oxygen, back home, in her community, doing the things she likes," Gadre says. "There's definite improvement in her quality of life. Her life expectancy is improved because of the transplant. She's settled into her routine with anti-rejection medications. She doesn't have any major issues at this stage."
Settling back in
Since returning home in April, the Kernagises have had to return to Cleveland a couple of times, after Mona's lungs started filling with fluid and her body started rejecting them. But things finally seemed to have settled down.
For now, Mona rests. The anti-rejection medicine suppresses her immune system, so it won't attack her new lungs. Thus the masks and hand sanitizer.
In total, Mona takes 30-plus medications a day. She's annoyed by the side effects: dizziness, nausea. "The steroids give me puffy cheeks," says Mona, who used to work as a travel agent and drug tester. She and Tony raised their two children in Homewood before moving to Valparaiso nine years ago.
She's working on gaining back the 30 pounds she lost. She wants to get back to bicycling, traveling, even gardening.
"My lungs are great," she says. "The rest of me isn't taking it that well."
She has a walker, or holds on to Tony to get around. She's been leaning on him a lot these past three years. He's been by her side, pretty much around the clock. In sickness, and in health.
Tony Kernagis, a 73-year-old former automotive consultant, served in Vietnam. He says this was more difficult.
"The caregivers, I think, actually have the harder job. We just have to get well," Mona says. "They are the ones doing everything and put up with your bad moods."
She turns to her husband. "Thank you," she says.
"You were good," he responds.
The Kernagises, for obvious reasons, are now big advocates of people becoming organ donors. The couple recently celebrated their 50th wedding anniversary.
"What a shame if that couldn't have happened?" Tony says.
Her grandkids plan to write a letter to the donor's family, to say thanks.
"Mona is an example of what a donor can do," Tony says. "She's living proof of what the outcome can be. Of one donor. Just one donor."
The average wait for a lung transplant is three months, Gadre notes, and 20 people a day lose their lives while on the waiting list.
"Lung transplants truly improve the quality of life for these patients with end-stage lung disease," she says. "There's truly a need for creating awareness about transplants and lung transplants in particular so more people commit to becoming organ donors. There's always a dearth of organ donors, and lot of people die waiting for this life-saving surgery."
One of Mona's seven grandkids asked her if she can tell the lungs aren't hers. She can't. The only difference is, because many of the nerve endings were severed, it sometimes doesn't feel like she's breathing.
As Mona describes this, she appears to labor a bit to breathe. She's frail.
But she's here.
"She looks good," Tony says. "She's always smiling."