30 Days of PH: Life in 25ft.

by Colleen Steele | November 12, 2020

Day 12 of 30 Days of PH⁣
Topic: Life in 25ft.

This is Tracey’s story @tracey.lawrence

I was diagnosed with PH almost a year ago. The diagnosis came in rather traumatic circumstances with me going into respiratory arrest and heart failure following a routine IV infusion to treat Lupus. I had been suffering from shortness of breath for some time. I consulted with a cardiologist on a number of occasions and told me that I would feel better if I lost some weight. I really didn’t think that there was anything seriously wrong with me until my world came crashing down.

I am a fiercely independent person, some have even called me a loner and a control freak, but I have always believed that if you want something done, it’s best to do it yourself. I’m a troubleshooter and problem solver but now I have a problem that doesn’t have a solution. Over the last 12 months, I have spent more time in the hospital than out, with numerous admissions to the ICU and my health seems to be slipping away. I have gone from living alone to needing full-time care in my home. I can no longer just breathe the fresh air in my lovely little village, but rather now have to depend on an oxygen concentrator for life.

I have a love-hate relationship with the oxygen concentrator, churning away by my side, and the 25ft tube that feeds oxygen to me. Man, it’s a noisy companion and oh so restrictive. But if positioned correctly, I can sit in the lounge and watch TV, sit at my desk, and do some work, sleep in my own comfortable bed, and stretch it out to the shower. With a bit of creative thinking and some excellent extension cables, I can now even sit outside on my patio, and when the gods are shining on me, I can throw the ball for the dogs. I can do all this but am always fully aware of the 25ft tube that connects me to life. The tube that jerks my head back just as I’m hitting my stride because it got caught up under a door; The tube that gets tangled up in my feet tripping me up. The tube has given rise to the theory that if PH doesn’t kill me, the tripping up in the tube surely will!

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About the Author

Colleen Steele Colleen Steele 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.