An International Quest for Lifesaving Care

UC San Diego Health’s transplant team comes through for a Palauan couple seeking specialized care during the pandemic

It’s autumn 2021, and nearly every day for the past several months, Shallum and Mandy Etpison have taken long walks along the La Jolla coastline, admiring the marine life and photographing the ospreys, sea lions and harbor seals. It doesn’t seem like an unusual pastime for a couple with a shared love of the sea until you consider their lives one year ago: Shallum was recovering from a life-saving double lung transplant after a tumultuous international quest for medical care that started just as the COVID-19 pandemic was locking down embassies and closing borders. Now, thanks to the help of many friends and connections that eventually led them to UC San Diego Health, the Etpisons will soon be returning to their home in the tiny island nation of Palau.

Shallum is a Palauan leader and businessman involved in tourism and real estate, and Mandy is a Dutch author and photographer who first came to Palau as a diving instructor in the 1980s. Together, the couple has raised a family and become deeply involved in preserving Palau’s culture and environment. In 2000, they established a museum to document Palau’s history and preserve its artifacts.

In 2019, Shallum’s health began to quickly decline. After seeing the closest available specialists in the Philippines and Thailand, he was eventually diagnosed with idiopathic pulmonary fibrosis (IPF). This serious, irreversible disease causes scar tissue to form in the lungs, limiting the capacity for oxygen. Its cause is unknown, and one can live with it for many years before symptoms begin to take over.

His physician recommended he seek a specialist in Europe or North America as IPF rarely occurs in Asia. In late 2019, Shallum and Mandy travelled to the Netherlands. It became apparent that a double lung transplant was Shallum’s only hope. Because organ transplants are reserved for citizens, his only options were in the Netherlands, where Mandy was able to obtain a medical visa for him, or in the United States, where Palauans have a special status due to the island’s history as a U.S. Trust Territory. Shallum returned to Palau to wrap up business matters and prepared to move to the Netherlands to take the tests necessary for consideration for the lung transplant waiting list.

The timing for travel, it turned out, could not have been worse — especially for someone in Shallum’s condition. The COVID-19 pandemic hit, and Shallum and Mandy were stuck in Palau. Virtually all flights off the island were quickly halted to protect its 20,000 residents from COVID’s spread. A friend was able to secure them a flight from Palau to the Netherlands. Shallum had been considered a perfect candidate for the transplant early on, but during four months of testing and preparation in the Netherlands, his condition deteriorated. Not only did his lung function decrease dramatically but he developed a heart condition, likely due to the physical stress of IPF. The Dutch lung team ultimately declined him as a transplant patient. By now it was mid-2020 and the pandemic made it nearly impossible for the Etpisons to seek care elsewhere – or even return home.

Scrambling for solutions, Shallum and Mandy called Dr. Daniel Bouland at UC San Diego Health, a family friend who had practiced alongside Shallum’s brother-in-law when both were beginning their medical careers. Dr. Bouland had even visited the Etpisons in Palau to dive its world-renowned reefs. Now, he was the connection that would lead them to life-saving care during an incredibly challenging time. But there were many hurdles yet to clear to make it happen.  

With the American embassy essentially closed down in the Netherlands, it took many calls and emails from the Palau government and friends and connections in Washington to get the U.S. embassy to consider Shallum and Mandy’s request for a travel ban exception so they could travel to the United States for medical care. Everyone involved was uncertain Shallum would even survive the flight. But Shallum and Mandy made it to San Diego, Dr. Bouland and his wife picked them up, and Shallum’s sister came from Virginia to help them get settled in.

It was now mid-July and Shallum’s health was precarious. He had made it to the U.S., but still needed insurance and a provider willing to accept him. Shallum and Mandy completed the required post-travel quarantine in a hotel and were able to get on the transplant waiting list in September. Dr. Gordon Yung, a pulmonologist at UC San Diego Health, was responsive to their unique situation, helping them to arrange for a continuation of the testing they had already begun in the Netherlands to prepare for the lung transplant.

“My condition was so bad, they considered giving me just one lung because of the urgency,” says Shallum. “I signed for all the options. I would take whatever they could get.” After one false start when the donor lungs were deemed too damaged to transplant, on October 1 Shallum’s surgery was performed. The double lung transplant was completed by Dr. Eugene Golts, cardiothoracic surgeon and surgical director of the Lung Transplant Program at UC San Diego Health. Then Shallum began the long process of adaptation and recovery.

“I was lucky to have Dr. Golts because he had experience as a heart and lung transplant surgeon. He had seen cases where the heart recovered from the stress of IPF after the transplant, so he thought it was worth the risk.”

Dr. Golts’ assumption was right. After the transplant, Shallum’s heart and lung function both greatly improved. “We didn’t know how much time I had left. If they had waited a little longer, I might not have been able to go through the process,” says Shallum.

“The first three months afterward were hardest as your body adjusts,” says Mandy. “We could call them with any issues. They were awesome, there was always somebody there to help. This has definitely been our best experience among the many hospitals we visited in the Netherlands and Asia. They took a hands-on approach and always went above and beyond.”

When asked about her advice for others facing a health crisis or supporting a loved one, Mandy says “I think the main thing is to not give up. Always seek a second opinion and keep fighting. Shallum would have died if we had given up. It’s also very important to learn about your own condition and do your homework. It helps when you know what to ask.”

One year after the transplant, Shallum is regaining his strength, walking several miles a day, and has tried deep sea fishing to see how it compares with fishing in Palau. He is trying to leave more of his work to his children, but he says he will never retire. With no medical specialists or detailed lab services available on Palau, Shallum and Mandy will need to return to San Diego every three months to monitor Shallum’s progress. But it has become like a second home to them already. Mandy was even inspired to publish a book about coastal wildlife in La Jolla, which she gave to Shallum’s doctors as a gift.

Please consider helping to support research for Idiopathic Pulmonary Fibrosis at UC San Diego.