Feeling Pulmonary Hypertension’s Impact Beyond the Lungs

Feeling Pulmonary Hypertension’s Impact Beyond the Lungs

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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.

11 comments

  1. Jan says:

    I too feel many of the symptoms indicated above. I have had 254 espiaodes of afib since January 25th one episode lasted over 4 hours and this is with a pacemaker. we are looking for a medicine to help me with afib. My cardiologist is trying multaq and it seems to be helping. I was on zeralto until i had internal bleeding. The Pulmonary Hypertention was not found until I had the majority of the other symptoms.

    • Brittany Foster says:

      Hi Jan.
      I can relate to the delay in diagnosis for you. I hope the doctor are able to get your arrhythmias under control ! Feeling your heat rate like that is so unsettling. All the best to you !

  2. Kathleen Rabalais says:

    I have all of your symptoms. I have afib combined with blood pressures of 89/54 in the morning and through out the day. I cannot take blood pressure meds. Thank you for writing this article;I handed my computer to my husband (who is my wonderful caregiver) to read and he knows pretty much what I go through. Have you ever heard of using Xanax with
    betepace? I was placed on this ten years ago and it helped me enough to forget the afib. Due to governmental intrusion in our medical care, I was taken off it and have suffered greatly with dysautonomia due to the PAH.

    • Brittany Foster says:

      Hi Kathleen,
      Thank you for your response. I used to be given ativan to help with some of the anxiety I would have related to feeling my heart racing. It didn’t help as much for me and it also slows my respiration rate which the doctors don’t want! But I am glad that something like that (xanax) helped you ! It is always hard when our symptoms and feelings are hard to put into words so I’m glad this article is something that you can relate to and share with others who help with your care. Have you registered for the forums for pulmonary hypertension? I’m sure you will find other great support there too! Here is the link if you would like to register. https://pulmonaryhypertensionnews.com/forums/

  3. A. S. Collins says:

    I deem this to be among the very best accounts of the disease by a PH sufferer that I have read – and I have read quite a few! When someone gets around to assembling a collection of outstanding personal testaments by the PHighters of our time, this will warrant prominence within it.

    • Brittany Foster says:

      Thank you so much for reading my columns. I’m glad you are able to read something you can relate to. Keep fighting !

  4. This is brilliant, thank you for putting it into words. I am going to share immediately on our FB page and add it to the PH Bloggers section of our website http://www.phna.info. It will also feature in a future edition of our magazine PHan Mail. Keep up the great work and from one PHer to another thank you. Melissa

  5. Beverly Vitullo says:

    I have recently been told that I have pulmonary hypertension and see a pulmonary specialist tomorrow. I am happy to see that there is a wealth of info on pulmonary hypertension such as news letters, etc.

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