The Unpredictable IPF Journey Brings New Adventures Every Day

“Every day is a new adventure!”

This is often my response when someone asks how I’m doing. It also seems appropriate when looking forward to what 2022 may hold for me.

I faithfully use my calendar to keep track of many tasks, both professional and personal. Before I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, my workdays were filled with meetings that often lasted into the evenings. These meetings might run short or long, or be canceled or moved to accommodate everyone’s schedules. Every day was different.

In the past five years, I have continued to keep my calendar. My days look much the same, except the meetings are now doctor appointments. Scheduling changes still occur, but for different reasons. I must revise my calendar to include new lab tests or procedures ordered by my care team.

One lesson I’ve learned since my diagnosis is that things seldom go as planned. Regardless of what is written on the calendar, there is a high likelihood that events will allow for new adventures.

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Planning and being prepared

IPF patients quickly learn that the disease is unpredictable. From the very beginning, my care team preached about the importance of planning for the best outcome while preparing for the unexpected. Along with regular trips to the clinic, which are routine in a pre-transplant program, my calendar was filled with all the pre-transplant testing I had to complete before presenting my case to the transplant committee. While the tests were important, the most demanding part of the process was meeting with each member of the committee.

Post-transplant, the number of appointments fluctuated; however, my schedule remains busy. Different types of appointments offer some variety. For instance, I now have clinic visits with my post-transplant care team, as well as a nephrologist to monitor my kidney function and treatment.

I also spend more time doing bloodwork to look for changes in my panels, venous Doppler ultrasounds to look for blood clots, pentamidine breathing treatments to prevent pneumonia, and flexible bronchoscopies to examine my lungs, collect biopsies for analysis, and conduct bronchoalveolar lavage procedures.

Getting ahead of the blizzard

My first appointment this year was a bronchoscopy on Jan. 3, at 10 a.m. My wife, Susan, and I planned to leave at 6 a.m. for the 90-minute drive to ensure we arrived early for check-in and prep. When we woke up the day before, the weather forecast had changed from a cooling trend to a winter storm watch, which became more ominous as the day continued. We decided to head north and stay in a hotel near the hospital that night to avoid the stress of bad weather in the morning. That proved to be a good choice.

When we left the hotel on the morning of the appointment, snow had just begun sticking to the roads. We had plenty of time. Both check-in and prep went well, and the bronchoscopy went smoothly, with a good initial report from the doctor. When we looked out the hospital windows, there was no doubt the snow had arrived.

Afterward, I wasn’t allowed to drive because of the anesthesia, so Susan was behind the wheel. Thankfully, she grew up near Pittsburgh, and knows how to drive in the snow. We left the hospital around noon and made it about 5 miles before deciding that another night in the hotel was a good idea.

We left the next morning and arrived home at noon. Our neighborhood had been without power for over a day and had lost over 100 trees, which our plowing contractor moved out of the road. Fortunately, our generator was running and our neighbor had plowed our driveway. All was well.

Every day brings an opportunity for a new adventure, and those of us affected by IPF will encounter many of them. Embrace these opportunities, and remember to make every breath count.

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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.