30 Days of PH: Reflections on Our Awesome Community

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by BNS Staff |

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Photo courtesy of Colleen Steele

Day 30 of 30

This is Colleen Steele’s story:

My son Cullen had pediatric idiopathic pulmonary arterial hypertension (IPAH) and received a heart and double-lung transplant seven years ago. As a columnist and forum moderator for Pulmonary Hypertension News, I strive to help others by sharing Cullen’s story and my experience as his caregiver. But leading the “30 Days of PH” project holds a special place in my heart. It gives me great pleasure to provide others an opportunity to spread awareness by sharing their own PH journey.

When re-reading stories from the past, it’s heartbreaking to discover that some are no longer with us. But that is imperative to why we advocate for the PH community.

In remembrance:

When things got difficult, Jon Berry found purpose and meaning through his wife and two children. Given a 50/50 chance of survival as a child, he beat the odds and lived into his 50s. Jon concluded his story with “Why give up now?” He lived and loved to the fullest until his passing in February 2021.

Diagnosed at age 22, Jhenna Pacelli MacDonough refused to give up. She fought PH hard and found joy in farm life, horses, and being a volunteer coordinator for a therapeutic riding program. Jhenna passed in March 2021. These powerful words she wrote are worth considering and remembering her by: “This disease made me who I am today and I’m proud of that!”

Transplant stories:

Tammy Sue Flores-Stephens received a double-lung transplant in January 2020.

Teenager Tatiana Ranftl received a double-lung transplant in May 2021.

In July 2021, Jacque Wilkinson received a double-lung and heart transplant.

Tracey Lawrence underwent a mitral valve replacement and tricuspid valve repair.

May their success stories provide hope to those waiting for a lifesaving procedure, especially Evelyn Melendez, who’s currently listed for a double-lung transplant.

Uplifting stories:

Congratulations Galen and Regina Bohannon, who recently became husband and wife.

Sarah Donoughue and Sarah Sizemore now have their drivers’ licenses. May they stay safe and enjoy their newfound freedom!

Help spread PH awareness and consider sharing your own story through “30 Days of PH” next November.

Note: Colleen Steele writes the “Life as a Caregiver” column for Pulmonary Hypertension News.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.