How to explain the complexities of pulmonary hypertension to others

Understanding pulmonary hypertension (PH) can be challenging. It’s a complex, unpredictable disease, and explaining it to others can feel daunting. So I’ve put together a quick explainer that may help.

Last year, at the Pulmonary Hypertension Association’s (PHA) Capitol Hill Day, I explained PH to many people while sharing details of my own health journey. After one meeting, another advocate turned to me and said, “You just taught me a lot about PH.”

Her comment struck me. I was surprised that she hadn’t known the information I’d explained. It made me wonder how many others with PH aren’t aware of some of the things I share to help people understand the disease.

Recommended Reading

January 21, 2026 News by Margarida Maia, PhD

Antioxidant enzyme helps protect lung blood vessels in CTEPH: Study

The heart is a muscle

With my medical background, I understand much of what’s happening in our bodies with PH. It hadn’t occurred to me that many others who are living with it might not fully grasp what’s going on. Most of us recognize the headaches and jaw pain (side effects of medication) and know what it’s like to gasp for air in the shower or wake up exhausted. But I still wonder how many people truly understand what’s happening inside our bodies.

Let me share a few facts: Oxygen is present in the lungs, but blood can’t move through the pulmonary circulatory system efficiently enough to pick it up and deliver it. Blood is pumped from the right ventricle of the heart into pulmonary arteries, which carry deoxygenated blood to the lungs, where it is oxygenated. Oxygenated blood returns via pulmonary veins to the heart’s left atrium, then to the left ventricle, and is pumped to the rest of the body.

Columnist Jolie Lizana lobbies on Capitol Hill in Washington, D.C. in 2025. (Courtesy of Jolie Lizana)

The problem in PH isn’t the absence of oxygen in the lungs — it’s that blood can’t move through the pulmonary arteries (PAs) efficiently enough to pick it up and deliver it. The PAs are the only arteries that transport deoxygenated blood from the heart to the lungs for oxygenation. Many medications can help relax PAs, reduce pressure, and help stop or slow the abnormal growth, thickening, and narrowing of them, keeping patients stable longer.

Medications can also enhance the body’s natural vessel-relaxing signaling pathways, helping the pulmonary arteries dilate (widen) so blood flows more freely. When these arteries narrow or “crimp down,” less oxygenated blood reaches the heart. This lack of oxygen sends distress signals, like red flags, to the heart.

If only the lungs were involved, PH wouldn’t be so complex or vary so much between individuals. But our hearts are also affected because they receive these distress signals and must respond. I like to imagine the heart as a gym enthusiast — always ready to push harder. (No offense to gym lovers!)

Our heart thinks the answer to everything is to push harder and faster, so that’s exactly what it does. It works vigorously, even when we’re at rest or asleep, like it’s always at the gym. So if you wake up tired or feel exhausted all the time, it’s understandable — your heart has been working overtime, and you still might not be getting enough oxygen for it to function optimally.

As I mentioned, the right ventricle holds blood before sending it to the pulmonary arteries. As the heart works harder, the right ventricle gains muscle and enlarges to keep up. Sometimes, it gains so much muscle that it has trouble relaxing and can’t receive as much blood to push into the pulmonary arteries. The pressure can get so high that it stretches the septum (the wall between the right and left ventricles), interfering with the heart’s pumping ability and signaling progression toward right-sided heart failure.

That’s where I am now: I have heart failure, which I’ve lived with for 12 years. Heart failure can be frightening, but I mostly see it as my heart adapting to my body’s needs. When I remember that, it feels less scary.

So to sum it up, here’s my quick explainer: The arteries in my lungs are narrowing, so my heart is pumping faster and harder to make up for the lack of oxygen. My arteries can’t handle the pressure, but my heart is a muscle, so it keeps working hard. Eventually, though, it may give out.

Remember, you don’t owe anyone an explanation, but feel free to use this script when talking to others about PH. Understanding what’s happening and being able to explain it can help us all make sense of the many “whys.” Why am I so tired? Why can’t I push the grocery cart? I hope this helps!

One additional note, I am on the PHA’s Patient and Caregiver Education Committee, so if you’d like to learn more about a specific topic, please let me know in the comments below. You can also follow me on Facebook or Instagram for more on PH-related matters.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.