Boulder High grad reflects on transplant

Iain Hess began high school not knowing if he would live to see his graduation day. Thanks to a lifesaving double-lung transplant, he walked across the stage with his classmates this May during graduation.

Hess, a Boulder native, was 5 when a routine checkup revealed he had pulmonary arterial hypertension, high blood pressure in the lungs that is caused by scar tissue in the lungs’ blood vessels.

During a checkup before a family trip to India, his doctor became alarmed when he heard a prominent second heart sound while examining the boy. That same day, a central venous catheter was placed to begin treatment.

From that point forward the now 18-year-old had to come to terms with a new definition of normal, one that included numerous doctor’s visits and constant limitations. It wasn’t until he turned 10 that he realized his version of normal wasn’t the same as his classmates’.

“I finally realized that I couldn’t keep up with the other kids quite as much as I could’ve previously,” he said.

Hess’s new reality didn’t last long. In 2015, he started to notice a significant decline in his health. He tried telling himself that this was just a gradual change, but it turned out to be more serious.

In the summer of 2016, Hess’ family planned a family trip to Europe. They didn’t tell Hess but they suspected this would be their last family trip together. After the trip the family decided to take Hess to a doctor in St. Louis who specializes in a shunt surgery that could help him.

Dr. Joshua Blatter, Hess’ primary surgeon, specializes in the Potts shunt surgery at St. Louis Children’s Hospital, where he has practiced for four years.

“Iain’s course was more of a kind of constant fear of what could happen, because of the way in which people do get sick with pulmonary arterial hypertension, there’s not necessarily a very recognizable slow decline but more like one’s life being increasingly difficult throughout their life,” Blatter said.

Hess received the Potts shunt surgery that summer. The shunt failed because of his age and previous complications, leaving Hess and his family at a crossroads.

The next and final step was a double lung transplant, a rare surgery with which St. Louis Children’s Hospital has the most experience in pediatric patients in the U.S.

Before Hess and his father moved to St. Louis to wait for the surgery, the entire family visited relatives in California for Thanksgiving.

Oxygen tank in tow, Hess spent the trip saying his goodbyes to his cousins and his sister. He recalls feeling prepared yet nervous as the possibility of a transplant increased.

In December, Hess and his father drove to St. Louis to settle in for what would be a six-month stay. They lived in a two-bedroom apartment down the street from the hospital.

Hess spent two months sitting and waiting for the call that the donor lungs were available, a call that would hopefully save his life. He couldn’t focus on anything else.

“I didn’t want to do anything,” said Hess, who was a junior at Boulder High School at the time. “I just wanted to stay in the apartment and do absolutely nothing.”

The call that changed his life came Jan. 17, 2017, sending the Hess family rushing to St. Louis Children’s Hospital.

Hess spent the night before his 17-hour transplant surgery in the hospital. Then he had complications because of the condition of his lungs, the medications he was taking and how long he had been sick.

Hess said he doesn’t re- member waking up until a month after the transplant.

He learned later that while recovering he had an extremely high temperature and internal bleeding and then had several seizures. He was placed on an extracorporeal membrane oxygenation machine to circulate his blood.

Blatter said Hess’s seizures can be attributed to two factors.

“We see seizures because of the immunosuppressant medicine, Tacrolimus, that has a known side effect of potential neurologic side effects,” he said. “The particular combination Iain had may have been a combination of his being on Tacrolimus and that his lungs weren’t working well enough.”

After four months of recovery, Hess was released from St. Louis Children’s Hospital, allowing the family to return to Colorado.

When Hess got back to Boulder, he spent his entire summer trying to catch up on schoolwork. He hadn’t done work in the more than six months he was waiting for and recovering from his transplant and he spent every free moment studying math and history.

The hard work paid off and Hess, and his new lungs, walked with his classmates at graduation this May.

Now he has a new lease on life. He is finally able to take advantage of all that living in Colorado has to offer, like spending time in the mountains, skiing and hiking. He is working a lot and plans a gap year before college. He will participate in an internship in Dublin, Ireland, next year.

“It is 100 times better than it was before,” Hess said. “I can breathe. I can do whatever I want, really. It is incomparable.”