30 Days of PH: Staying Positive With PH

by Colleen Steele | November 4, 2020

Day 4 of 30 Days of PH⁣
Topic: Staying Positive With PH ⁣

This is Kathleen’s story @irishkathg

I was diagnosed with Pulmonary Hypertension in May 2009. I was prescribed two oral medications but as the months passed, I got increasingly tired and short of breath. By June 2010, I moved from Los Angeles back to my native Cleveland, Ohio because I couldn’t live without help. I was quite fearful of the unknown, being debilitated, and having to rely on others for basic activities.

My new pulmonologist promptly ordered tests. One week later, I went from having a right heart catheterization to being wheeled into the ICU for heart failure. I needed a Remodulin pump as soon as possible. It sounded horrible and I swore I would never do it. When I declined my doctor told me I would not live more than two weeks without it. When he wouldn’t release me from the hospital my family guilted me into getting the pump.

The first six months were horrible; I was in pain, sick, and miserable. I was hating life and feeling sorry for myself. Facebook was filled with friends doing all sorts of activities like running marathons and climbing Mount Everest. One day I stopped myself and said “Kathleen, you never ran marathons when you were healthy, you are just looking to feel sorry for yourself.”

This was my “ah-ha” moment. It helped change my outlook on life. I decided not to be a victim and started looking at life in terms of what I could do instead of what I couldn’t. I didn’t want anyone’s pity or to be viewed as “the sick girl.”

I kept waiting for life to be okay, but I learned it was already okay, I just needed to practice radical acceptance of “What Is!”

I have a tattoo of my motto: “Be happy, joyous, and free.” Exercising mental strength and a positive attitude gets me through each day no matter how I am feeling. I have my “Why me” moments, but then I think, “why not me?”

You can have a chronic disease and live a productive, meaningful life. I should be dead. My doctor is constantly amazed at how well I am doing. I told him my secret is to never let sickness rule my world. I have a disease. Big deal, everyone has something.

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About the Author

Colleen Steele Colleen Steele was born and raised in New Jersey, and received a bachelor of arts in English from Immaculata University in 1994. She lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.