Teresa Bailey was a dental assistant for 33 years before becoming director of the dental assisting program at Ivy Tech Community College for 17 years. She retired at 66 because of pulmonary arterial hypertension complications but still teaches virtual classes. Bailey has two children and a granddaughter. Bailey, of Fishers, Indiana, dreams of taking an Amtrak train tour from Chicago to San Francisco and back.
After experiencing a chronic cough in 2021, my primary care physician recommended an echocardiogram. The sonographer asked, “Who’s treating your PH?” I stared at her, baffled. “My what?” I exclaimed. “Your PH,” she repeated. “It says in your chart you have mild to moderate pulmonary hypertension.”
Four years earlier, I had received a thyroidectomy. During the procedure, the doctors discovered I had PH, but no one told me, even at discharge.
I worked in the dental field, so I always keep notes and paperwork. I couldn’t find any record or documentation that showed I had PH. By the time I got a definitive diagnosis, my mild to moderate pulmonary hypertension was severe.
To have such crucial time taken away from me was incredibly hard to come to terms with. This experience makes me extra thankful for how far we’ve come with PH research and treatment. Back in the day, I could have died because of the delay.
Making up for lost time
I am here today because of Robert Machado, a pulmonologist at IU Health Advanced Heart and Lung Care in Indianapolis. After he began treating me, everything started falling into place. He laid out a clear treatment plan that gave me hope. It’s hard to find a doctor who will advocate for what’s best for you.
In May 2021, I needed oxygen full time and a walker. In August, I started taking Remodulin (treprostinil) and Opsumit (macitentan). As my body adjusted to the medication, I felt debilitated. I lost 30 pounds because I couldn’t keep food down. I had to use a walker to get around my house. Once my body started accepting the medication, and I made other dietary adjustments, I felt stronger. I could go to the grocery store and pick out food instead of having it delivered.
I now need to use oxygen only when I exercise. I added Winrevair (sotatercept) to my medication regimen after it was FDA-approved in April 2024. I’ve done so well with the Winrevair, my doctor lowered my Remodulin dosage.
I also participated in a yearlong clinical trial for an inhaled powder by Merck. When acquaintances asked whether I was afraid, I said maybe the drug would work for me. Even if it didn’t, I wanted to help others with PH as those in previous trials helped me. I want to contribute to PH research and breakthroughs in hopes they’ll help our future.
Finding community
The most rewarding part of my treatment is pulmonary rehab. I started walking 1.2 miles an hour for only six minutes. Now I walk for an hour every day. I split my walks between 30- and 40-minute intervals on the treadmill and walk about three or four miles a day. My friends at rehab tease me and say, “Look who’s showing off.” But I’m proving to myself what I’m capable of.
At rehab, not only am I building my stamina and endurance, but I’m building my community. In my group, there are 12 people with different lung conditions, including pulmonary fibrosis, COPD, and of course PH. We learn about everyone’s conditions and their treatment plans. We are very close and constantly offer support to each other.
Our respiratory therapists are amazing. They notice if you don’t come and ask where you are. They keep up with your goals and adjust your rehab plan to reflect changes. One respiratory therapist called me the PAH poster child because I’ve improved so much from when I started rehab.
I am so thankful for this group.
My light
My main motivation to fight each day is my granddaughter, Ginna, who was born without femurs. On her right side, she has her tibia and fibula, but on her left side she has a tibia and club foot. She was told she would be in a wheelchair her whole life. She’s now 3 and can walk and run.
Jenna sees a physical therapist, occupational therapist, speech therapist and a specialist for her condition. She is too young to understand what she’s going through, but she keeps such a positive mindset. She even calls her club foot her “cool leg.”
When I think about my own condition, I look at Jenna and say to myself, “By golly if she can do it, so can I.”
She truly brings so much light into my life and I’m so grateful for her. I want her to look at grandma and see a fighter too.
