This PH Awareness Month, I Invite You to Share Your Story

Spread awareness by participating in our 30 Days of PH project

Colleen Steele avatar

by Colleen Steele |

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Take a walk with me.

Our senses are awakened the moment we step outside. The sun feels comforting, but a brisk breeze suddenly sends a chill through us. We are reminded that we have stepped out into a season of transition. Most trees are already bare, but some are still holding on to their colorful leaves.

We start talking about what nature is reminding us to prepare for: winter. Our emotions are being awakened and what they are depends on how well we handle change.

The topic turns to the approaching holiday season. Perhaps one of us is happily anticipating its arrival while the other is dreading it.

We return home and flip our calendars to November, all ready for its start tomorrow.

I think it’s appropriate that during this month that has great influence on us emotionally and physically, we focus on a rare disease that does much of the same.

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November is Pulmonary Hypertension (PH) Awareness Month. It’s a time designated to taking action and spreading awareness and resources.

The Pulmonary Hypertension Association has made this year’s theme “PHacing the Future day by day.”

Much like November, living with PH is like living in a constant state of transition. Life can be warm, happy, and full of anticipation, but one must always be prepared for the possibility that tomorrow might be cold, unsettling, and make the mind and body rebel.

Day by day PH patients do their best to keep moving forward despite symptoms of the disease and side effects of its treatments.

Day by day PHers do their best not just to survive, but to live and enjoy their life. They go to work and school, maintain friendships, enjoy hobbies, travel, and accomplish and enjoy many wonderful things — all in between medical appointments, tests and procedures, and bad PH days.

There are many days when living means resting. Any long-term PH survivor will tell you there is nothing wrong with that. A bad PH day is just like a chilly day in November — it’s a good idea to stay in and relax.

Sadly, winter can suddenly appear fast and furious when living with PH. When that happens, rest often takes place not at home, but at the hospital.

Indeed, living with PH is like living in a constant state of transition.

Sharing our stories

My son Cullen was diagnosed with PH when he was 8 and received a heart and double-lung transplant in 2014. He’s 22 now and eight years post-transplant. As his caregiver, I am very familiar with feeling like we’re always living in November.

Life for Cullen post-transplant is comfortable and happy, but much like his PH days, he remains prepared in case the season changes.

And as co-moderator for the Pulmonary Hypertension News Forums, I witness others living day by day in much the same way. They all are amazing people who don’t allow PH to change who they are any more than they do the weather. I empathize with their health struggles and find joy in the other aspects of their life they share — the things that make them happy and define who they really are.

This is the fourth year PH News will spread awareness through the 30 Days of PH project. We will highlight different voices within our community every day throughout November’s awareness month.

PH patients, spouses or significant others, siblings, PH doctors, nurses, social workers, family members who have lost someone to PH, and PH patients who have received a transplant or are currently listed are all invited to share a part of their PH journey with others.

Our goal is to have a collection of different approaches to different facets of life with PH. The participant chooses the topic, writes about it in 250-400 words, and submits two pictures that will be included.

We will continue to accept stories through Nov. 4 at 30 Days of Pulmonary Hypertension — Story Submission.

Take others on a brief walk with you through your PH journey. Hearing your story just might be what someone needs to help keep them PHacing the future day by day.

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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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