There is hope for patients, but you have to be your own advocate to get there.

I’m originally from California, and when I moved to Hawaii, I never anticipated seeking specialized medical care. This all changed when I was diagnosed with pulmonary arterial hypertension in 2021.

When I started experiencing shortness of breath and swelling in my legs, I wasn’t sure why. When my symptoms persisted, I went to my primary care physician in Hawaii, who referred me to a cardiologist. The cardiologist performed my first right heart catheterization and confirmed I had PH. Later on, another right heart catheterization at University of California, Los Angeles confirmed I had PAH.

Search for appropriate care

I had many concerns about my PH, especially while managing my rheumatoid arthritis. I was unsure what the diagnosis meant for my future. RA affects your muscles, which include your heart, so managing RA and PH goes hand in hand.

Finding a doctor I could trust and who understood both conditions was important. My PH journey took four doctors in Hawaii and five doctors in California. The larger Hawaiian islands have hospitals and primary care physicians but lack specialized PH care.

After a negative experience with the pulmonologist in Hawaii, my search brought me to Stanford University. A pulmonologist reviewed my case and agreed to meet with me, but I had to get pre-authorization from my insurance company since the doctor wasn’t in my network and specialized in PAH.

At times, it was frustrating and overwhelming to go around in circles with the insurance company on the phone and find doctors to review my case. I had to become my own advocate and did so much research on the internet to figure out what came next. I wish I had a social worker or an expert to help me through the process.

My doctor at Stanford gave me a brochure about the Pulmonary Hypertension Association, which helped with my research. I learned about PHA-accredited PH Care Centers, which led me to my current pulmonologist at UCLA.

Looking back, I’m grateful I had the financial means to travel to the mainland for care, but those financial resources have dwindled. You can count the thousands of dollars I’ve spent on airfare to go back and forth between Hawaii and California.

This is why I share my story. About 200 people in Hawaii live with PH, and I’m not the only one experiencing this. Everyone is spread out, and the outer islands don’t have major hospitals. It’s just a different life here when it comes to finding specialized care.

Be your own advocate

In 2025, I was one of 30 advocates who traveled to Washington, D.C., for PHA’s Hill Day. It took a long time to get there, and I had to make the journey over multiple days to rest properly between flights.

I didn’t know what to expect when I went. I wouldn’t say I was starstruck, but I was in awe of everything we were seeing throughout the day. It was truly an educational experience, and I even got to do some sightseeing the following day.

Meeting patients who are on oxygen or have undergone a lung transplant made me wonder what the future holds for me. My biggest takeaway was that each person’s experience is different, and I realized how lucky I was to be around others who understand this disease.

There is hope for patients, but you have to be your own advocate to get there. That’s the most frustrating part. Navigating insurance, symptoms, and the complexity of PAH and other health conditions makes things difficult.