The Day-to-Day Symptoms I Experienced While Living With PH

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by Anna Jeter |

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Pulmonary hypertension (PH) patients use several analogies to describe what it feels like to live with the illness each day. One example is that it’s akin to breathing the air at the top of Mount Everest. Another is that the exhaustion makes us feel like we’re constantly running a marathon.

While these extreme examples reach toward the truth, they can hardly quantify the physical experience of living with PH day to day. In my 19 years of living with the illness, I found the symptoms to be varied, erratic, and often difficult to pinpoint.

It can be isolating to live with symptoms that so few understand. Because it’s difficult to put words to these physical feelings, one may be less likely to attempt to describe them. Still, I feel that it’s important for me to try, in an effort to advocate for those living with these symptoms as their norm.

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While symptoms of any illness will vary from person to person, I experienced the following most regularly while living with PH.

Shortness of breath

I’ve never stood atop Mount Everest, so I can’t imagine breathing the air up there, but living with PH certainly made me familiar with shortness of breath. It’s important to make the distinction that this involves lung-burning discomfort, and not the simple, passing breathlessness that may follow a healthy person’s workout.

Additionally, this symptom feels inescapable. Especially later in my illness, shortness of breath would happen with minimal exertion or even upon lying down without supplemental oxygen.

Pain

It took me a long time to acknowledge that I lived with chronic pain as a result of my PH. The aches I experienced were abstract. Often it was back pain that felt related to my lungs and the additional muscles I required to breathe, but I could never be fully certain of the cause. I often minimized the issue, since it didn’t feel significant enough to address. And yet the symptom affected me on a frequent and regular basis, altering my energy and even my mood.

Heart symptoms

In the second half of my life with PH, my heart symptoms became prominent as my heart failure worsened. Most noticeably, I had frequent heart palpitations. These often made me even shorter of breath and left me wanting to hit my chest in an attempt to jostle my heart back on track. Days with frequent palpitations were exhausting and uncomfortable.

I also struggled with boluses (bursts) of medication due to kinks or blockages in my central line, which affected my heart. A rush of medication like Remodulin (treprostinil) would cause heart racing, nausea, and a sustained headache once other symptoms had passed. These events were completely unpredictable and required immediate rest.

Digestive problems

As is common with many illnesses and medications, I had frequent stomach issues over the years, with diarrhea being prominent. This was, again, a symptom that I minimized, since it was simply a secondary outcome of the illness and not a direct threat to my health. With that said, it had a big impact on my day-to-day comfort and quality of life, and looking back, I wish I would’ve advocated for better treatment of these problems.

Other

It’s only fair to include an open-ended category to encompass everything else I experienced throughout my illness. Things like bloody noses and unexplainable numbness plagued me unpredictably. One week, a new symptom would pop up, only to disappear the next and never return again. I was never certain what each day would hold.

I’ll never be able to recall and describe each of these experiences perfectly. But I also know the benefit of bringing awareness to the complex ways that PH changed my day-to-day existence. Carrying these symptoms without relief can be a heavy burden, but if the gap of understanding can be lessened, then greater support can be provided.


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.

Comments

Marjorie H. Buckland avatar

Marjorie H. Buckland

This was very informative to me--since I was diagnosed withPAH 2 years ago.
I am now 80 years old with these symptoms, especially shortness of breath.
Thank You.

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Julie Saville avatar

Julie Saville

I am going to the respiratory physician tomorrow for my diagnosis. I know what it is because the cardiologist found it when doing an echocardiogram. And he ordered CT scans of my chest to get the ball rolling and to ensure that I did not have a blood clot. I don’t but now I wish I did because they could have fixed that. I have a connective tissue disorder which my Mum and her Mum had - Ehlers Danlos. My Mum went through this for the last 10 years of her life. I am hoping that medicine has found better ways of dealing with this now. I am frightened but quite determined and I am not over weight and I exercise a lot. I cannot do what I used to do but I am continuing with as much as possible. If the diagnosis is what I think/know it will be I will be giving up work. I am 63 and I have been so tired this last six months. Thank you for this helpful and hopeful information.

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