Rosetta is a 35-year-old woman living with idiopathic pulmonary arterial hypertension (iPAH). She recently spoke with myPHteam about her life with PAH and how she manages it. These are Rosetta’s responses about living with PAH.

My name is Rosetta Hoag, and I live with pulmonary arterial hypertension (PAH). I’m 35 years old, married, and have a 10-year-old daughter. I work as a manager at McDonald’s. For fun, I like watching housewife shows and listening to music while doing chores. I also love being around my family.

How do you manage your PAH? Do you use prescription treatments for your symptoms?

I was diagnosed with idiopathic pulmonary arterial hypertension in December 2014. I took two medications for about seven years, and in 2021, my doctors changed my medication therapy. I currently take three different medications to manage my PAH symptoms.

Do you use any techniques like exercise, diet, stress management, or support from family or friends? Is there anything else that has helped you cope with your PAH?

I try to manage my stress by watching TV and taking walks outside when I can. Now that it’s cold outside, I stay inside and use my stationary bike, since the cold interferes with my breathing.

I also tried PAH support groups at one point but couldn’t connect mentally at the time. My family makes me feel better. Just being around people and not being lonely helps. From time to time, I reach out to the support line from the Pulmonary Hypertension Association to ask to talk to other people with PH.

What type of doctors do you see for your PAH?

I’m treated by one of the best PH specialists, and she is saving my life. I believe my last PH doctor didn’t have my best interest in mind.

How often do you go to the doctor for your PAH?

When I got transferred to [a new clinic], I had to consistently see them every two to three months because my condition was severe. Now that I’ve gotten much better and have been taken out of the high-risk group, I don’t have to return for another six months.

What tests do you usually undergo during doctors’ visits for PAH?

During appointments, I get blood work done to check my BNP [B-type natriuretic peptide] levels and complete blood counts. I also do a six-minute walk test. When necessary, I get an ultrasound of my heart. My doctor answers any questions I have at the time, and I’m also able to message her through a portal with my questions.

How has PAH affected your daily life?

Pulmonary hypertension has become a part of many aspects of my life. I take medicine all day long because I have to take one medication every four hours. I must always remember to have the alarm set on my phone.

I also have to follow a low-sodium diet. I get more tired than the average person, so I only work four days a week.

Explaining this disease to my daughter, Briana, isn’t always easy, but she understands that my disease is serious and she helps me. She carries groceries for me, scoops the cat litter, cleans her room, and vacuums to help me with chores.

I only explain my PAH to people who ask and must know. I’ve tried telling more people in the past, but they didn’t seem to be interested. I feel like most people have their own problems to think about and may not have the time to care about someone else’s. I’m also the type of person who doesn’t want a pity party.

What advice do you have for other people with PAH about PAH treatments and care?

My advice to other people with PAH or PH is to make sure your PH doctor really understands this disease and knows all of the treatments that are out there. This disease is rare and not many people know about it. A lot of primary care doctors don’t know much about it, so make sure to see a cardiologist or pulmonologist.

Still, enjoy life because there are other things that will take you out besides PH. “Take it one day at a time” is something I’m always told. Nobody knows the future, but I remain optimistic about things getting better with this disease.

My Perspective articles discuss PAH or PH from a specific point of view. We understand that everyone with PAH or PH, or caring for someone with the condition, has a different experience. We aim to share as many of those viewpoints as we can.

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