Making quick adjustments when things don’t go as planned

Have you ever experienced a period in your life when nothing seemed to go right? While that may seem an odd question for those in the rare disease community, in my case, sadly, it’s not rhetorical.

June has altered some of the best-laid plans, and that trend has flowed into July. Sometimes, sounding the all-clear signal doesn’t necessarily mean that all is clear. June would prove to be the wrong time to let my guard down.

By way of background

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I suspected the journey would contain a surprise or two. I was correct about the surprises but underestimated their number.

Each of our journeys is likely similar in many ways, but they’re also unique. From the day I was diagnosed until my bilateral lung transplant on July 10, 2021, the process was pretty well scripted. Dr. Steven Nathan and the rest of my care team at Inova’s Advanced Lung Disease and Transplant Center in Virginia knew what to expect. Their experience allowed them to anticipate surprises and quickly make adjustments.

To prepare before my transplant, I received a checklist of all the tests, labs, and vaccinations I needed to make a work-up that the clinic’s transplant committee could use to make a recommendation. The results of those items had two possible outcomes: one would allow an item to be marked complete, while the other might indicate the need for further testing or a different type of test.

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Today, I’m two years plus one day post-transplant. There have been some surprises over the past two years, and in each case, my care team at Inova quickly reacted to protect me and my donor-gifted lungs.

In my post-transplant world, I typically refer to surprises as exacerbations. I had pneumonia last fall and COVID-19 last April. Both required hospitalization and were managed quickly by the team at Inova.

My ongoing issue now is a narrowing bronchial stem. In May, a stent was placed in my left bronchial stem in an attempt to train it to stop narrowing. I was due to have my 16th bronchoscopy on June 27. But that didn’t happen.

What did happen

I live around 90 minutes from Inova. While there are closer hospitals, I have a great relationship with my care team there. On June 27, my wife, Susan, and I were on the way there when we learned that she’d been exposed to a friend who tested positive for COVID-19 on the morning of my appointment.

After consulting with the nurses and my interventional pulmonologist, the decision was made to reschedule the bronchoscopy. While the rate of COVID-19 has declined here in the U.S., the virus is certainly still around.

It was an instant reminder for us IPF patients — and anyone else who is immunocompromised — to remain vigilant about our environment. Everyone in the situation I described above was fully vaccinated and had recovered from COVID-19.

A sign of the times for the immunocompromised patient community. (Graphic by Sam Kirton)

To further complicate the situation, a new circulation pattern for respiratory syncytial virus (RSV) might affect people with chronic illnesses, including lung issues. According to a study shared by the U.S. Centers for Disease Control and Prevention, the seasonal circulation of RSV was disrupted in 2020 with the onset of the pandemic.

It noted, “Although the timing of the 2022–23 [RSV] season suggests that seasonal patterns are returning toward those observed in prepandemic years, clinicians should be aware that off-season RSV circulation might continue.”

My bronchoscopy was rescheduled for today, July 11. Both Susan and I have tested negative for COVID-19. Reaching out to the interventional pulmonology team was the right thing to do. We have a responsibility to protect those caring for us.

This potential COVID-19 exposure reminded me to proceed cautiously and be aware of those around me. Protecting my health while living my best life means I must make informed risk decisions. It’s part of how I make every breath count.

Have you let your guard down lately regarding COVID-19? Please share your thoughts in the comments below.

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.