30 Days of PH: Dealing With The Elephant in the Room

30 Days of PH: Dealing With The Elephant in the Room
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Day 29 of 30 Days of PH⁣
Topic: Dealing With The Elephant In The Room

This is Skarlette’s Story @skarletteisdead   

In December 2015, I was diagnosed with pulmonary hypertension and heart failure.

My diagnosis did not come easily. I’d been struggling for a long time and it took multiple doctors, three hospitals, seemingly endless tests, and a lot of hard conversations to finally find out what was wrong. And while having an answer closed one door, it opened another.

I was researching clinical trials and palliative care options when my friends were researching colleges and getting their first jobs. My declining health quickly became the elephant in every room.

I’ve always been both a pessimist and a perfectionist, so I immediately began planning every detail of my funeral. Literally. My friends joked that I was having a teenage midlife crisis, but planning was strangely cathartic. I guess it was my way of coming to terms with the fact that in many ways, PH is a death sentence. It’s not pretty. It’s painful, it’s violent, and it’s terrifying.

I used to think doctors could do anything and save anyone. Naive, right? But 17-year olds don’t want to think about things like that. After all, that’s ‘old people stuff’, as my high school boyfriend said. Then I realized that sometimes even the best doctors and drugs can’t save you.

After finishing my end of life plans, I made what is possibly the most boring bucket list ever. Ordinary things became a goal because I craved normalcy and was too sick to do the big things.

 I managed to cross off every single thing on that list, and then something unexpected happened. Almost five years later, I’m still here. I made it to adulthood, and that’s a miracle.

I’ve since managed to find some stability, and I am grateful to even be writing this. I’m still a “worst-case scenario” type of person and my body is pretty much a walking train wreck, but that body still stands despite the pain it has endured. I’ve accepted that my life will always look different from others whether I die tomorrow or live to be 60.

After so many years of planning and being terrified of what my future might hold, it’s time for me to live in the moment.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, 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 the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. 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, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, 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 the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. 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, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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