While Difficult to Share, Here Is My PH Story

November is Pulmonary Hypertension Awareness Month, a good time to share a little more about my journey with y’all. My hope is that you will tell your stories and generate awareness about pulmonary hypertension (PH) within your communities.

I was diagnosed in 2005. Because of my nursing background, I had brushed off my symptoms. I remember thinking that I had eaten too much and gained weight over the holidays.

But I knew something was wrong.

I was grocery shopping one afternoon after work when I started to feel “off.” Holding on to my cart, I was dizzy and short of breath. It was strange because I walked and jogged several times a week, and I attended aerobics classes.

Thinking back, it was scary abandoning that cart of groceries and making my way to the car. I felt like crap. And this was not me. I called my husband at work and told him something was wrong, but that I could make it home safely. That probably was not the best idea. Thanks to God, I made it.

I made an appointment with my primary care provider. I was still working as a nurse and trying to fit it in after seeing my patients. He did an exam and ordered several lab tests, but didn’t seem overly concerned.

A few days later, my manager asked me what was going on. Co-workers remarked that I looked like the “Michelin Man.” My manager was the second person to point out that I was short of breath while talking. I dismissed it and finished the day.

It was the last day that I worked.

That same weekend, I found myself in a hospital emergency room. My family noticed that my lips and feet were purple. My heart was beating so fast it felt like it might pop out at any minute. Doctor after doctor examined me. They were more perplexed than I was. I’ve lost count of how many days I stayed in the hospital.

Finally, I saw a doctor who had previously worked in a PH center. He argued with the hospital and my insurance provider, insisting that I was “a very sick young lady.” He started me on a calcium channel blocker, which was ineffective. Later, I started Revatio (sildenafil), which I am still on. Through the years, I have been on a combination of oral medications.

PH has several known causes. In my case, doctors suspected that my diagnosis was linked to diet pills. Previously, a doctor had prescribed “fen-phen” after I gained 90 pounds during my pregnancy. Obviously, it was not the best choice. I had no clue at the time that something meant to improve my health would turn my life upside down.

When I’ve shared my story on social media, I have received some harsh comments and messages. Some said I was unlike them because I “caused” my PH.

I would never judge someone with a rare and life-threatening illness. I know people who were born with PH. I also know people who developed PH from other causes. We are all in this fight together, and together we will find a cure.

For my readers, I hope my story has not deterred you from reading my columns. I hesitated to share for fear of being judged. But I want to tell real stories, and sometimes “real” can be difficult to write and to process. If my story helps one person, I am victorious.

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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.