Sharing Hope and Expressing Gratitude for Our PHamily

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by Colleen Steele |

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As Pulmonary Hypertension Awareness Month draws to a close, the complexities of this disease have been exemplified by the sharing of personal battles. Our community has cried out in memory of those who have died to raise awareness of pulmonary hypertension (PH) as a life-threatening condition.

We have explained that transplant is unobtainable for many with PH and presents significant risks and challenges for those who are eligible. In response to this reality, some in the PH community organized fundraisers or donated to support research toward a cure that is less intrusive and more reliable than the uncertainty of transplant.

While all of these efforts are important, this week I encourage you to focus on your PHamily. Reach out to new members in the community to make them aware that they are not alone in this battle. Offer hope by sharing your story of survival and the wonderful moments in your life despite PH.

This week in the United States, we celebrate Thanksgiving. Having a son who had PH and then a heart and double-lung transplant, I am more acutely aware of what I am thankful for than I was before his diagnosis.

When my son received his diagnosis, I feared he wouldn’t live to celebrate his next birthday. Thanks to Flolan (epoprostenol GM), oral treatments, and excellent care from his PH team, not only did he survive, but also enjoyed a better quality of life for five years.

During those years, he cherished time with his family, celebrated holidays, enjoyed friendships, attended school, and graduated from the eighth grade. These moments of normalcy and happy occasions brought hope through the struggles, treatments, complications, and hospital stays.

When fear and the difficult realities of PH reared their ugly heads, we turned to our extended PHamily. If anything good has come of my son having had PH, it’s the bond we formed with these amazing, compassionate, strong families whose lives were turned upside down by the same disease.

Through them, my knowledge of PH increased, strengthening my ability to advocate for my son, and enhancing my determination to educate others. It didn’t take long before I found myself paying it forward by being what I hope was a source of inspiration for newcomers blindsided by this rare diagnosis.

PH awareness for my son and family took a positive turn when we discovered that we were not lost or alone on this journey. That is why I encourage others to join our Pulmonary Hypertension News Forums as well as social media and community support groups — so that they can discover for themselves what it means to be a PHamily.

I have also found hope outside the PH community. Many family members, friends, and even strangers have provided comfort, prayers, and support. My first step toward developing this kind of understanding was speaking about PH and how it affected my son and our family. I believe suffering in silence to be an unnecessary side effect of PH.

My son declined after five years on multiple PH therapies. We were inspired by stories of long-term PH survivors who avoided transplant, and hoped that my son would be one of them. But each PH story is different, and for him, a heart and double-lung transplant became inevitable at a young age.

Each transplant story is different as well. We have grieved the passing of four of my son’s closest PH friends because of post-transplant complications. Survivor’s guilt can become all-consuming, so we try to focus on the hope that his survival five years post-transplant might give to others.

My son focuses his hope and gratitude on keeping memories of his friends alive. He remembers their strengths and interests and tries to apply their values to his own life. Through their inspiration and his determination, he has graduated from high school, started college, and hopes to pursue a career in medical social work.

PH awareness should not focus only on the lives taken too soon, but on how those people made a difference in the world. Honor their wisdom, compassion, strength, and determination by reminding yourself and others who are facing PH or transplant of the value of these traits. Remember their humor and the laughter they generated when life becomes too serious and smiles are forgotten.

You can find light under the dark cloud of PH, no matter where the journey has taken you.

Awareness of hope and finding things for which to be thankful help to maintain a healthy mind through the ups and downs of PH. If you’ve lost hope and gratitude, then reach out to your PHamily — they will help you find your way back.


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.


Kathy avatar


I can say all day long and hopefully till my own dieing breath Survivers guilt is a waste of time. But I know it is also what makes your post so important and has strengthen our journey together. You and Cullen are my survival story. I never want him to or you to grieve a relationship that has changed the lives of so many.


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