30 Days of PH: Caring for a Child with Pulmonary Hypertension

30 Days of PH: Caring for a Child with Pulmonary Hypertension
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Day 27 of 30 Days of PH⁣
Topic: Caring for a Child with Pulmonary Hypertension

Photos by Nila Buchanan Photography

This is Kim’s Story

I’m a mother to two fantastic children via adoption. My oldest is a pretty typical child and my youngest is a very complex young lady. She has a complicated heart, and along with that came pulmonary hypertension.

Josie was 3 by the time my sister and I were able to travel to China to meet her. When we returned home, our children’s hospital checked her out immediately – and came to some very alarming conclusions about her heart and lungs.

That was the beginning of my caregiver journey. Josie was originally declared inoperable. That is when I learned the value of second opinions from good pediatric PH programs. Eventually, LPCH-Stanford proposed doing a full repair of Josie’s heart, despite PH.

It turned out her PH was much worse than tests had shown, so recovery was rough. But eventually, she healed and was sent home on all kinds of meds. This included an inhaled treatment that was prepped daily and given multiple times a day. Unfortunately, it was not strong enough and she went into heart failure, so back to LPCH we went.

Before we finally found a really good regime, we tried an under the skin infusion pump that delivered medication via a central line, a clinical trial for a new oral medication, and finally the medication she is currently on.

 Josie has been hospitalized 11 times – once for each major medication change, 3 operations, and the rest for strep or flu. For all of these, I did hospital time with her. I also had to learn the management ropes of the new meds and all about the insurance options.

I have a system to keep the meds in stock and straight so she gets the right ones at the right time. Josie is stable for now. Sometimes the strong medicines make her feel crummy, but she bounces back and keeps going.

Josie does not think of herself as being seriously ill. She looks at that as being in the past when she had pumps attached. Josie is a happy and optimistic soul who loves her life and takes her disease and its limits in stride. And, after all, who am I to tell her differently?

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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:

    This is a story that would motivate any young person with PAH. It is amazing that she survived two heart operations. As a older person with PAH CTEPH it was determined that I was not a candidate for heart surgery. Therefore I congratulate Kim and her mother for their endurance.

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