30 Days of PH: Why Give Up Now?

30 Days of PH: Why Give Up Now?
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Day 14 of 30 Days of PH⁣
Topic: Why Give Up Now?

This is Jon’s story

I have Pulmonary Hypertension. To be specific, I have secondary pulmonary hypertension due to a congenital heart defect, transportation of the great arteries. I also have congestive heart failure as a complication of my heart defect. It gets confusing knowing which symptom is related to which diagnosis, but when it comes down to it, they all cause most of the same symptoms:
breathlessness, arrhythmias, and tiredness.

I am 54 years old, so I feel fairly lucky to still be around and kicking. I’m married and have two children, 11 and 14 years old. They give my life purpose and meaning which is important when things are difficult.

My health over the last 15-20 years has been like a rollercoaster. For a while, it may be smooth and easy sailing, and then suddenly, I turn a corner and plummet into an abyss from which there appears to be no recovery.

Overall, my health has diminished and the length of time between complications seems to shorten. I will not, however, give up! I didn’t give up as a child when I was given a 50/50 chance of making it through childhood. Why give up now?

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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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