Life as a Caregiver - a Column by Colleen Steele
My Son Loves His Extraordinarily Ordinary Post-transplant Life
by Colleen Steele | January 10, 2022
Following years of slow decline due to pulmonary hypertension (PH), by 2014, my son Cullen was in critical health, and our hopes were fading. Thankfully, a heart and double-lung transplant saved Cullen from the imminent expiration date PH had placed on him. A few months later, being alive to ring in 2015 was reason enough to answer with a confident "Yes" when I was asked if proceeding with his transplant was worth it.
Now, seven years later, even the extensive ongoing medical care and post-transplant health challenges have not changed that answer.
People also ask what sort of amazing things a person like Cullen is doing after receiving a second chance at life. It must be shocking to learn that Cullen's post-transplant life has been extraordinarily ordinary, and he has been grateful for every second. He has been living life to the fullest by enjoying everything that healthy people sometimes take for granted.
No longer short of breath, he finds joy in singing or whistling along with his favorite songs. He finds reason every day to laugh aloud and encourages others to laugh along with him.
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He loves engaging in conversations about simple things, such as his opinion on a movie, as well as heavier topics, such as current events, and anything in between. As much as he enjoys talking to people, he also values what others have to say, and compassionately offers advice when asked.
Cullen tells his family every day that he loves them and finds joy in playing and snuggling with our pets.
These everyday moments make him happy, and I rarely see him in a bad mood. Sweating the small stuff is something he just doesn't do, and he handles the big stuff with a calmness I wish I could imitate.
His experiences, achievements, and special moments have become extraordinary memories because, without a transplant, they would have never happened, like a faded dream.
Many people were looking forward to putting 2021 out of sight and out of mind, but it was a year that Cullen will fondly remember. We visited my parents for two weeks in New Jersey. It meant the world to Cullen to do this, and I bubbled over with gratitude that he could.
For the trip, he flew for the first time since his transplant. It felt amazing to watch him carry his luggage, walk the long corridors to our gate, and board the plane without needing supplemental oxygen.
Cullen enjoys Carol Night at Immaculata University with his mom and Pop-Pop in December 2021. (Courtesy of Colleen Steele)
While we were there, I also got to take him to my alma mater, Immaculata University, to experience the beautiful tradition of Carol Night under the rotunda. More joyous than the carols was hearing Cullen sing along to them.
Cullen, his mom, and Pop-Pop walk through Christmas lights at the Philadelphia Zoo in December 2021. (Courtesy of Colleen Steele)
And when Cullen saw a commercial for the Philadelphia Zoo LumiNature Christmas lights event, he said he wanted to go, so, of course, I bought him tickets. It was cold, and there was a lot of walking — two things that would have potentially put him in a PH crisis before the transplant. Instead, all he experienced during the event was a special memory with his Pop-Pop and me.
Throughout our visit, Cullen made time every day to work on his college finals. When we returned home to Washington, he found out that he aced both his classes and final exams. It's not just his grades that make me proud, but that he thoroughly enjoys his education. Even though his safest option during the COVID-19 pandemic was to take them online, he focused on the opportunity, and not the inconvenience. If anyone is used to adapting to change and making the best of things, it's Cullen.
My son has lost several good friends due to post-transplant complications, and we know that many PH patients are ineligible even to receive one. This makes me feel somewhat guilty explaining how much we have valued Cullen's decision to proceed with a transplant.
As part of this process, patients are inundated with scary statistics and an overwhelming amount of information about what to expect post-transplant. It can make some feel discouraged. That's why it's important to me to share Cullen's success story. There was a time when we were searching for hope, and now it's our turn to give it.
These seven years haven't been a continuously smooth ride, but for us, all the wonderful ordinary moments that have accumulated post-transplant have become an extraordinary life that almost never was.
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.
Colleen Steele Colleen was born and raised in New Jersey, and received a Bachelor of Arts in English from Immaculata University in 1994. 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 14, he received a heart and double-lung transplant. 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 column, "Life As A Caregiver," Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.
complications, COVID-19, heart and double-lung transplant, post-transplant care, pulmonary hypertensive crisis, supplemental oxygen
Sally Hoffman
Once again, Colleen, you have brought me to tears. Thank you for the wonderful letter.
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