30 Days of PH: Power In Vulnerability

30 Days of PH: Power In Vulnerability
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Day 21 of 30 Days of PH⁣
Topic: Power In Vulnerability

This is Gerry’s Story @_gllangan  

When I was diagnosed in September 2018, I had severe IPAH and severe congestive heart failure. I was put on an IV infusion pump with Remodulin and it was downright intimidating. I began seeking out other people who had PH and searched on the internet for as much information as possible.

I was met with a community who, for no fault of their own, had a very doomy and gloomy outlook. Many of the PH groups that I joined were so scary that I had to remove myself and hide notifications from them. The information that I found on the internet was terrifying– with words like “terminal”, “progressive” and “life-expectancy” meeting me at every turn. I felt overwhelmed.

Here I was, a new twin mom and military wife, newly diagnosed with a severe life-altering condition. All I wanted was hope. I started sharing my story to combat the negativity, and that was when things began to change. At first, I was sharing my story with my friends and family. It was easier to notify people of changes via social media, but what I found once I started posting vulnerably was completely unexpected. 

My people start coming out of the woodwork, other Phighters who had the same experiences as me, same positive outlook, and the same desire for hope. The Phighters that I have met in the last two years have made this journey worthwhile. They have shared their stories, their fears, and have been so helpful throughout my own journey. They have given me so much hope and so much inspiration, and I hope that I have made as much of an impact on them as they have on me.

Now I am advocating for PH warriors to share their stories, and not be scared to advocate for themselves in the doctor’s office. On Instagram, I’m vulnerable, honest, and most of all positive. I have PH, but PH doesn’t have me. Since starting this advocacy journey, I have been asked to be on advisory boards, attend conferences, and share my stories across multiple different platforms and blogs. I am honored to represent this PH community in this space. PH altered my life, but it has given me so much more than it has taken.

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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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2 comments

  1. Randy Reynolds says:

    Gerry’s story has my attention. My PAH has slowly become too dominant in my life with it since 2014. I applaud anyone who can go public on their condition and express themselves. As a Phighter only a few close friends are aware of the nature of this disease. The only way for me to communicate on line with other PAH people is through the forums. I wish for Gerry what we all wish and that is hope, no pain, and an ability to be mobile.

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