Feeling Pulmonary Hypertension’s Impact Beyond the Lungs

According to the Mayo Clinic, pulmonary hypertension is defined as “a type of high blood pressure that affects the arteries in your lungs and the right side of your heart.” When someone talks about pulmonary hypertension, they often think of only the lungs. Although it is true that it is a lung disease that damages lung function, this disease takes a toll on more than just breathing.

I feel physically drained with oxygen levels in the upper 70s and lower 80s, plus, my cardiovascular system pumps blood at a different rate than the average person. The fatigue from my body overworking has stressed almost every system in my body. Pulmonary hypertension goes far beyond the lungs. The cardiovascular system, muscles, GI tract, brain, and my immune system (from frequent respiratory infections) all have been under more stress since diagnosis.

Cardiovascular: Pulmonary hypertension affects my body’s electrical activity and causes blood pressure changes. Doctors found that I had heart rate pauses and episodes of fast heart rates called atrial fibrillation and SVT. I had a pacemaker implanted and am now on a high dose of beta blockers to help keep my heart paced at full time.

I am very sensitive to blood pressure changes affected by gas exchanges; when I retain carbon dioxide, my blood pressure increases. Blood pressure fluctuations give me a flushed face, faster heart rate, and a pounding headache.

Muscular: The muscles are another part of my body that has changed over time. Because of oxygen deprivation in my muscles, I have become weaker over the past few years. My legs feel fatigued more easily and it’s difficult to sustain activity. There are some days when I feel exhausted just taking a shower and using my arms to wash my hair. Other days, I am able to make it through a low-impact exercise. My chest muscles and diaphragm have also become weaker, which makes my lungs restrictive — and this creates shortness of breath.

Gastrointestinal: The gastrointestinal (GI) tract is sensitive to stress from both physical or mental changes. As a result, I experience reflux (GERD), diarrhea, constipation, nausea, and bloating. Also, my bloating and GI discomfort are affected by fluid retention that I have, which hurts my appetite.

Brain: The brain is another organ that relies on blood flow and oxygen to work properly. Since my diagnosis, I have experienced brain fog, memory problems, and difficulty with attention. My mental health has also been affected, causing increased anxiety and depression due to the many changes that my body goes through, plus the ups and downs of each day.

It’s easy to feel overwhelmed by the toll that chronic illness takes on the body. To help manage the many bodily systems, it’s crucial to find doctors of different specializations who are willing to work with each other and coordinate care. Taking medications that help ease symptoms and being honest with medical professionals about any changes is an important part of self-advocating. It’s helpful when doctors treat a patient as a whole person — they shouldn’t only focus through the lens of their specialty.

With pulmonary hypertension, the simple act of breathing during the day feels like a full-time job. When other bodily systems leave me feeling even more symptomatic, it seems impossible to manage. But with the right care, medication management, and lifestyle changes, it’s possible — but it isn’t easy.

Do you experience any of the above symptoms beyond the lungs? Have you noticed that other body systems have been affected since your diagnosis or before your diagnosis? What symptoms do you experience from other systems? How do you manage this? Be part of the conversation on the Pulmonary Hypertension News forums.

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.