What Is It Really Like to Manage Pulmonary Arterial Hypertension? From Gasping for Air to Running a Marathon
Key takeaways:
Pulmonary arterial hypertension once made Lindsay Thurman fear she wouldn’t live to 30.
High blood pressure in her lungs made simple tasks, like walking or climbing stairs, almost impossible.
Now almost 40, Lindsay is a marathon runner who shares her story and helps others with the condition.
Since she was 23, Lindsay Thurman has known what it feels like to struggle for air.
She remembers one moment clearly. As she walked down a sidewalk, she felt her chest tighten and her heart race. She stopped, sat down, and tried to breathe slowly. But the pressure kept building. Every muscle in her body started to tense.
She knew she was about to lose consciousness.
That episode was part of life with pulmonary arterial hypertension (PAH).
For years, Lindsay tried to manage her symptoms with available treatments. But by 2019, walking or climbing stairs left her gasping for air. She felt drained if she slept less than 10 hours a night. And she fainted often.
“I didn’t think I would live much past 30 years old,” she says.
Today, things look very different. Now almost 40, Lindsay is a passionate runner who has completed a marathon. New medications have helped her manage her condition, and she says they have changed her life.
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“The three medications I’m on did not exist when I was first diagnosed,” she says. “Back then, it seemed a lot more bleak. And now, it’s way better than I would have ever thought possible.”
What is pulmonary arterial hypertension?
Pulmonary arterial hypertension happens when the blood vessels in the lungs narrow. This raises blood pressure in those blood vessels. And it makes the heart work harder to pump blood.
Without treatment, PAH gets worse over time. It can make everyday activities impossible.
A delayed diagnosis prolonged her treatment
Lindsay first noticed symptoms in 2008. “I would have to stop and catch my breath after walking up a couple of stairs,” she recalls. “I thought I was just out of shape.”
A routine doctor’s visit revealed a heart murmur, leading to more tests: an echocardiogram, CT scans, ultrasounds, and right heart catheterization. The results showed pulmonary pressure at 65 — far above the normal range of 25.
“That’s when I was officially diagnosed with pulmonary arterial hypertension,” Lindsay says.
Her doctor referred her to a pulmonologist in Dallas, about 3 hours from where she was living in Texas. But because of a mix-up at her doctor’s office (as Lindsay explains in this podcast), a staff member mistakenly told her the tests were normal. So Lindsay wasn’t sure if she actually had a diagnosis.
“She said everything was fine and to go live my life,” Lindsay says. “That was not in fact true.”
Feeling better at the time, Lindsay followed the advice. But 3 years later, her symptoms returned worse than ever. Simple tasks like carrying laundry or walking to her car caused fainting spells.
Retesting confirmed her diagnosis, with her lung pressure rising to 95.
How medications transformed her life
Over the years, Lindsay tried several medications, including tadalafil (Adcirca) and Opsumit (macitentan). Both help relax blood vessels in the lungs to improve blood flow. While these medications helped, she says they couldn’t fully control her symptoms.
In 2020, she had a scary episode during a routine doctor’s appointment when she experienced an irregular heartbeat, or arrhythmia during a walking test. She was admitted to the hospital for observation, and it prompted a conversation about escalating care.
She remembers her doctor saying she might need intravenous therapy if her condition got worse. IV therapy uses a port under the skin to give medicine, and it can come with serious side effects.
Instead of immediately moving to IV therapy, her doctor adjusted her treatment plan. She started taking Uptravi (selexipag), a new medication that helps relax the arteries in the lungs. It improved her condition. But side effects like nausea, diarrhea, and muscle pain were tough, she says.
“That was difficult,” Lindsay says. “The side effects were really harsh.”
To manage her symptoms, her doctors reduced her dosage when the side effects were too severe. And Lindsay took CBD oil for additional relief.
Feeling a difference with a newer medication
Even after taking so many different medications, Lindsay was still looking for answers. She considered her 2020 irregular heartbeat a frightening wake-up call. The idea of needing a port inserted under her skin to deliver the medication into her bloodstream 24/7 seemed overwhelming, she says. She didn’t want the medication administered through a pump, which she would need to carry in a bag at all times.
“I cried,” she says. “In my mind, that had always been a last resort. I felt I was on the verge of losing the battle.”
While exploring her options, Lindsay’s doctor suggested Adempas (riociguat), a newer oral medication. Unlike tadalafil, which relaxes blood vessels, Adempas helps the lungs process oxygen better and eases strain on the heart. In March 2020, Lindsay started taking it. It marked a turning point in her treatment.
“The minute I started taking it, I could feel a difference,” she says.
From breathless to marathon runner
Soon after starting Adempas, Lindsay was eating dinner when she felt “weird,” she says. Then, she realized it was the feeling of breathing easily — something she hadn’t felt in years.
“A few weeks later, I was on a walk with my dog when it dawned on me that I hadn’t had any symptoms in a month and a half,” she says. “I have not had a symptom since then at all.”
Encouraged by her progress, Lindsay decided to try running. She made it around the block.
“I was able to run for the first time in my adult life,” she says. “It was the best feeling ever.”
By 2021, Lindsay achieved an even greater milestone — completing her first marathon in 5.5 hours. She says her running dreams no longer feel impossible.
Balancing treatment and lifestyle
Since then, Lindsay’s lung pressure has dropped to 24 — within the normal range. She credits her success to a combination of medication and healthy habits.
These days, she is an active high school math teacher in Louisville who enjoys spending time with her nieces and writing. She has published magazine articles and finished a memoir about her life. She says she focuses on:
Eating a balanced diet, rich in fruits and vegetables
Managing stress through meditation and good sleep
“With PAH, stress is the enemy,” Lindsay says. “If you get super stressed, it makes things worse.”
Lindsay uses social media and works with groups like the American Lung Association. She connects with other runners and people with PAH to share knowledge and hope.
For “anybody living with this disease or newly diagnosed, the statistics can be really scary,” she says. “But I don’t think the statistics have caught up with the discoveries coming out lately. There are a lot of reasons to be encouraged. And who knows what the future holds?”
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