Pulmonary Hypertension Community Call

My name is Katrina Barry and I am from Boston, MA, USA. With a Bachelor’s degree in Biology, I worked at Brigham and Women’s Hospital doing research in personalized medicine on the 'All of Us’ research program. In 2019, my breathing worsened and eventually led to a heart attack. I was diagnosed with dozens of pulmonary embolisms in both lungs causing very severe heart damage. Through a right heart catheterization, I was  diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH). A month later during open heart surgery (PTE), the suspected clot burden wasn't found, but my arteries had collapsed and there was a previously unknown hole in my heart (PFO). Upon rewarming my body during surgery, they couldn’t get my heart to start. I went into cardiac arrest and ended up on VA ECMO and my family was told I would need a heart-lung transplant. After days on ECMO, I was brought back into the operating room so that they could move the ECMO to my groin, but was surprisingly able to be taken off ECMO. My chest wasn't able to be closed due to the high pressures. A day later, I was brought back to the operating room for a third time so they could finally close up my chest. My chest was left open for five days. At that point, I was off ECMO without transplant, but still intubated. I woke up over a week after going into surgery, with a BMI of 13. I was re-diagnosed with idiopathic pulmonary arterial hypertension mimicking CTEPH.

Since then, it has been a long journey to recovery. I was on continuous oxygen for over a year and IV Remodulin for over a year and a half. I was fortunate enough to join the Spectra trial for Sotatercept and have been on Sotatercept for about 2.5 years, now in the Soteria phase. With that, I was able to come off oxygen and IV Remodulin. I have reached a point in my recovery where I am able to outtalk my friends and family. I went skiing last winter and hiked up a volcano in Santorini this summer.

I am currently doing a Master’s in Public Health at Boston University, focusing on global health and infectious disease. I am planning to start a project with Dr. Aaron Waxman for the PVRI to help define pulmonary hypertension for the Global Burden of Disease for the World Health Organization. Since right heart catheterisations are not feasible for most people in most countries, the true global burden of pulmonary hypertension is not well known. This project will incorporate not only my personal experience as a pulmonary vascular disease patient, but also my focus on global health.

Thank you all for this incredible opportunity to be a part of the pulmonary vascular disease research community. I look forward to working with the PVRI.