It’s time to take this show on the road and enjoy life

The calendar of any rare disease patient is a marvel, with its complexity and efficiency. I’ve become both a master and a failure in constructing mine. I continue to miss the mark on making time to live life to the fullest.

My schedule gained new elements when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I suspect my patient journey might be similar to that of other IPF patients and those with other chronic, progressive diseases.

The battery of tests used to monitor disease progression indicates the urgency of the situation. When I was diagnosed in January 2017, the appointments and labs were evenly spaced for the first two years. Once the testing to qualify me for a lung transplant began, the pace was a little more hectic, with an increased sense of urgency.

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When my IPF progression began to accelerate, the clinic visits and lab work became more frequent. I had to repeat some tests to ensure my progression hadn’t invalidated the results.

When I received a bilateral lung transplant on July 10, 2021, I knew I was trading one chronic condition for another. I was able to breathe, which was a blessing. The first year following the transplant, my care team wanted me to stay close. Nevertheless, my wife, Susan, and I thought of travels after that year and did end up traveling by car during the second year.

But the number and frequency of appointments increased following two exacerbations during the second year. Since my transplant, I’ve had 15 bronchoscopies in the past 22 months. Sometimes it seems that I’m busier than when I was preparing for my transplant.

Susan, who is also my caregiver, shared a brutally honest observation. While she and I agree that medical appointments and procedures are the priority, she noted that the free time I had left remained so little that it prevented us from getting out and enjoying life.

Last week, I had medical appointments on three consecutive days, including a bronchoscopy to check on the stent placed in my left bronchial stem in May. After the appointments, the week was gone. There was no time left for us to get out and enjoy a short road trip or an adventure somewhere we’d never been before.

Changing my behavior

I needed to change how I approached scheduling appointments to ensure there’d be time to live life and enjoy the benefits of my transplant. It wasn’t as difficult as I’d anticipated, and my care team was supportive.

Susan and I have to plan our trips, so I’ve learned that if my care team wants to schedule an appointment or procedure, it’s fine for me to ask questions to find an agreeable time. Among the questions are whether the scheduling is urgent or key to another procedure. That way, I can determine if it’s OK to postpone or schedule further in the future. We recently tried this approach with my care team, and it was successful.

My goal in writing this column is to share my journey with you. It’s also great therapy for me to commit my experiences to words. One of the great benefits of writing for Pulmonary Fibrosis News is that I can write from anywhere and only need an internet connection to file my column.

With this new approach, I think I’ll be taking this column on the road. Susan and I are going to explore more.

Making more time to live the life I believe my donor intended is how I can make every breath count.

Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.