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Langerhans Cell Histiocytosis, Lung Transplant

Jessica and her family

After a childhood spent battling asthma attacks and countless bouts with bronchitis, when Jessica Schwanger was having a hard time breathing, she assumed it was asthma or another bronchitis episode. She made an appointment to see her doctor, thinking he would confirm her suspicion. While he didn’t see anything alarming during Jessica’s visit, her doctor ordered an x-ray to be on the safe side. When he saw the x-ray results, he asked Jessica to come in right away.

“He said my lungs looked like Swiss cheese on x-ray,” Jessica recalled. The damage was extensive and her physician ordered a biopsy. Jessica soon suffered a collapsed lung, and several different pathologists analyzed the biopsy. A correct diagnosis was finally confirmed: Langerhans cell histiocytosis (LCH) - a rare cancer that causes lesions to form in one or more places in the body. For Jessica, these lesions had formed in her lungs.

While finding the accurate diagnosis was a relief, the treatment was difficult and extensive. Jessica underwent two different types of chemotherapy and was on oxygen round the clock. As the mother of four children, Jessica struggled to complete everyday tasks. Even getting from one place to another in her home was tough, Jessica recalled, because navigating the space included using a walker or a cane and avoiding the oxygen tubes.

Living with LCH

Jessica on oxygen“I had severe bone pain in my legs and ribs,” Jessica remembered. “It was literally the most difficult season of my life. My lungs continued to collapse and I ended up being hospitalized for six weeks with a staph infection in the fluid around my heart.”

It was at that point that Jessica was evaluated for lung transplantation. After about a year, her name was added to the United Network of Organ Sharing (UNOS) transplant waiting list. While waiting for the call to come, Jessica endured more than 40 lung collapses and was alternately hospitalized for a week and then home for a week.

“Being on the transplant waiting list was really tough,” Jessica said. “It was exhausting to be in and out of the hospital. I couldn’t walk ten feet without huffing and puffing – to try to go anywhere or try do anything was such a hardship.”

Getting the Call

After waiting for two years, Jessica had one dry run. When the actual call came, Jessica could hardly believe it. She remembered that she was getting her sons ready for bed when the phone rang and was shocked when she heard the news.

“I answered the phone and Jackie [Golato, CRNP] said, ‘We have a set of lungs for you,’ and I said, ‘No you don’t!’ and Jackie said, ‘Yes! We do!’”

After the initial excitement, the drive to Penn from Jessica’s home in central Pennsylvania was sobering. Jessica called the people closest to her to let them know she was on her way in to the transplant center and let them know how much they meant to her.

“My mother-in-law drove and prayed a lot as I tried to take it all in,” Jessica said. “It was really important to me reach out to people because I knew the surgery was risky and I may not have another chance to let them know how much they meant to me.”

After ten hours of surgery, Jessica’s lung transplant was complete. Jessica was in a medically induced coma for five days. As soon as she was able to, Jessica had a video chat with her kids. She laughs when she remembers the moment when her youngest son first saw her. He exclaimed, “Mommy you’re not wearing any oxygen – I don’t ever remember you not wearing oxygen in my whole life!”

Life after Lung Transplant

Jessica after transplant“I am really fortunate,” Jessica notes. “I’ve had no set-backs, no hospitalizations. Sometimes my friends will ask me, ‘How can you take all those pills?’ and I tell them, ‘it’s easy when you need them to live! I’d rather be taking 30 pills than dealing with 30 oxygen tanks!’”

When asked what guidance she might give to those who are awaiting lung transplant, Jessica had two pieces of advice. Her first recommendation was to stay active and work out. “It will really help in the long run. If I hadn’t worked out I wouldn’t have been strong enough to make it through the operation. It’s hard to do but it’s worth it.”

Her second piece of advice for those awaiting transplant was to have a strong mental attitude. “Staying as positive as you can is really important,” Jessica advised.

When asked what sustained her throughout her transplant journey, Jessica credits her faith as an important source of strength. “God has much bigger shoulders than I do, so I let him carry all the burdens for me.”

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