The ups and downs of relying on home medical devices

A week or two before I had a heart and lung transplant seven years ago, my mom and I had lunch with a friend who was a pulmonary hypertension survivor and had received a transplant two years earlier. She shared with us what there was to look forward to after surgery, such as trying on new clothes in a changing room without the burden of having a medical device.

I could only imagine the freedom. Both of us had lived with central lines and IV pumps attached to us from a young age. The idea of being able to take off a shirt and put on a new one without negotiating with a tangled length of tubing and a device that had to remain attached at all times was enticing.

Unfortunately, following my transplant, I never got to experience this freedom. I traded my central line and pump for a tracheostomy and 24/7 supplemental oxygen. Every day, I drag around a long length of tubing connected to an oxygen concentrator, and I can never leave my house without juggling a heavy oxygen tank. Even more limiting is the home ventilator that I hook up to at nighttime.

There are days when it’s overwhelming to think that I haven’t been free from medical devices since the age of 4. It has affected my self-image, the way I dress, and even my ability to travel. If I focus on it for too long, it can become a suffocating thought. I often dream about being able to go into a dressing room unencumbered, and I grieve my loss.

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But I also can’t help but feel grateful for the other side of my reality. The truth is, I have greatly benefited from advances in medical devices. In many ways, I would not be here without them. Not only have they kept me alive, but they’ve also allowed me to live a medically complex life from the comfort of my home.

This is, of course, a bittersweet trade-off. I wish I could be free from this assistive equipment, but given my circumstances, I can only feel gratitude for its existence. It also keeps me invested in the improvement of these devices and the therapies they provide. The mechanisms for oxygen delivery haven’t changed in decades. Despite the number of people who rely on them, many devices are bulky and have a short battery life.

One example of progress is when I was able to downsize my IV pump in middle school. This significantly improved my quality of life throughout high school and college. These changes matter to patients, serving as a reminder that I should always advocate for improvements in my devices and treatments. I may never be completely free of these things attached to my body, but I can hope to see them become less burdensome over time.

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.