30 Days of PH: Life Before and After PH

by Colleen Steele | November 26, 2020

Day 26 of 30 Days of PH⁣
Topic: Life Before and After PH

This is Karen’s Story @karensawyer3384

My life before IPAH: Hairstylist, Salon owner, traveled, attended concerts, and hair shows. But in 2013, I blacked out on the way to the bathroom. I was told I had gone into cardiac arrest, had a broken rib, pneumonia, fluid in my lung, and sleep apnea. Then my doctor performed a right heart cath and told me I also have PAH.

Hearing that I was going to be on a pump and oxygen 24/7 made the seriousness of my condition set in. I had to leave my job at the salon. I was given hospital resources and a book from my specialty pharmacy but there was no counseling that could emotionally prepare me for having my job and community ripped from me.

I experienced pain and other side effects. I also had to use a walker for 2 years because of hip pain. But my new hip changed my life when I was taken off oxygen after the surgery. At a PAH conference, I heard of Orenitram and in 2016 I transitioned to oral medication. An alarm on my phone helps me keep track of them.

In 2017, I became a PAH support group leader. Since March, I have had 5 virtual PAH support group meetings. I also love to volunteer in fundraising run\walks for PAH. I just want to spread the word to other PAH patients that they are not alone.

Every day with PAH is different. I have good and bad ones. Meeting and talking to others with this disease has helped me a lot. Living with PAH has taught me that it is important not to overdo it. When I do, I make myself slow down and take it easy. Breathing air is a precious thing for me.

Joining PH groups and connecting with other patients has shown me how important it is to have a strong support system. PAH is a very emotional diagnosis, and the medications have a lot of potential side effects. Hearing other patient’s success stories is so encouraging. It is amazing to know that there are other people out there going through the same thing you are.

Through education and advocacy, PH can be a livable disease. I am 55 and living my best PH life!

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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.