Beyond The Diagnosis

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Living With A Rare Lung Disease

By Charles (Chuck) Boetsch, Age 70

As a person who enjoyed exercise and activities such as scuba diving, I knew something was wrong when I began experiencing a dry cough and extreme shortness of breath. Initially, it was easy to explain it away to getting older, seasonal allergies or needing to exercise more. However, it continued to persist and did not improve.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2013. IPF is a rare lung disease, which most people have never heard of, that affects about 100,000 people in the U.S.

When I received my diagnosis, I remember saying, “You’ve got to be kidding me… but OK, what is the treatment plan?” I had never heard of the disease and was shocked.

Pulmonary Fibrosis Awareness Month

September is Pulmonary Fibrosis Awareness Month and my hope is by sharing my experience I can encourage others to be cognizant of their lung health and signs that might indicate lung disease, such as IPF.

The disease is irreversible and incurable. It can take a long time to be diagnosed with IPF because it can seem similar to more common diseases, such as asthma or chronic obstructive pulmonary disease (COPD). In my case it took nearly three years, with multiple tests and visits to my primary care physician, cardiologist and a pulmonologist.  At the suggestion of my cardiologist, I was referred to a care team specializing in interstitial lung diseases, where after additional extensive testing I finally received an accurate diagnosis and plan of action.

My New Normal Isn’t Too Different

The thing about IPF is that it is unpredictable. It can progress quickly or slowly, and every person’s experience is different. I consider myself to be one of the fortunate of the unfortunate, as my condition has been stable for three years and I’ve worked with my doctor on a plan to manage my condition.

Overall, my day-to-day life has not changed that much and consists of exercise, shopping, light yard work and household chores. Plus, I still enjoy most leisure activities including golfing, cooking and spending time with family and friends. While I can no longer do certain activities, such as scuba diving, hiking, or intense exercise, my diagnosis has made me appreciate what I have and what I can do.

I am not on supplemental oxygen, yet like so many with this disease, I do get short of breath at high altitudes or while climbing multiple flights of stairs. My wife and I continue to travel, most recently to Alaska and Italy. Looking back, taking along a portable oxygen concentrator would have assisted greatly.

Living Well With IPF

Like the weather, every day with IPF can be different, so managing my IPF is very important to me. It is crucial to have a care team that specializes in interstitial lung diseases, including IPF. When I received my diagnosis, there were no FDA-approved treatments for IPF, and now there are two. In addition, there are currently numerous clinical trials for potential new treatments that one can participate in. There is new hope.

As part of my IPF management plan I take one of the approved medications and with my doctor’s approval, I exercise daily by walking, cycling, and strength training. I also attend pulmonary rehabilitation, where I work with a pulmonologist to learn the correct way to exercise to increase endurance and energy. In addition, I follow a diet that excludes gluten, most refined sugars and most dairy to minimize inflammation.

Ultimately, I try to live one day at a time, and enjoy God’s many blessings that are all around me. While I might not be able to do the same things I could do three years ago, I’m blessed and thankful for the support of my family, friends and care team.

Charles (Chuck) Boetsch lives in Florida and Illinois (in the summer). He is married, has four children, three grandchildren and worked as a consultant before retirement. Chuck enjoys travelling, reading, golfing, cooking and exercising.

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