We Must Keep Living Our Best Lives, Whatever Comes Our Way

How does a person with a chronic, progressive lung disease of unknown origin live their best life? How do they continue to live their best life in a pandemic?

In the days immediately following my diagnosis in January 2017, I made a couple key decisions about my relationship with idiopathic pulmonary fibrosis. I was going to be very open about my diagnosis. I elected to tell our immediate family in phone calls. Our friends and colleagues were told in a letter.

While my wife, Susan, and I explained the diagnosis I had received, we declared it would not be me asking, “Why me?” I was committed to being the happiest sick person anyone had ever met.

Filling the bucket list

I began thinking of the many things remaining on our bucket list. The trips we had not yet taken. The places we had not yet visited. The people we had not yet met. The grandchildren we had not yet met.

Recommended Reading

January 28, 2022 News by Marta Figueiredo, PhD

Circulating DNA May Be Biomarker of Rapidly Progressing IPF: Study

There were so many “not yets.” In consultation with my care team, we quickly determined that pursuing our bucket list was a go. I was fortunate in my professional and personal life to have traveled to six of the seven continents. Susan and I discovered we could cruise to the interior of Antarctica. Make that seven of seven!

We continue to live our best life. In my case, with Susan by my side, the life events I was not sure I would be a part of after my diagnosis have continued to happen in front of me. In 2018, my daughter got married, and I walked her down the aisle. We also held our first grandchild on the very day she was born.

Following my transplant last July, as my care team brought me up from anesthesia and was preparing to extubate me, I heard Susan ask me if I was ready to breathe. I was!

Adapting to change

I see so many in the PF and larger rare disease communities pushing their boundaries to live their best lives. We adapt. When I first started using supplemental oxygen, I carried portable “C” size tanks over my shoulder or in a backpack. As my need for oxygen increased, I pulled an “E” tank behind me.

Now, the COVID-19 pandemic means that members of the immunocompromised community have to find new ways to live their best lives in this world. We had to learn to pivot, to change our daily routines even more to stay safe and avoid becoming a prisoner of the pandemic.

Businesses and advocacy organizations also had to pivot because of the pandemic. The Pulmonary Fibrosis Foundation’s biannual summit last year was originally planned as an in-person event, but switched to virtual. One of the support groups I work with was looking for an alternative for their members who were unable to find exercise programs that met their abilities. I reached out to Studio Z Yoga, led by Melissa Turner, who is certified in trauma sensitive yoga. She had already switched to virtual classes, and made them available to those with different levels. These kinds of moves allow organizations to reach a broader audience.

Making every breath count

No one can predict when this pandemic will end and the world will be able to return to normal — either the old normal or a new one. In the meantime, we must all live our best life and be a part of the life events unfolding right in front of us.

The protections offered by vaccines, masks, and social distancing are some of the tools we can rely on. At the same time, we should continue to stay plugged into the wider world and participate virtually in the things that interest us. Staying plugged in is one way to ensure we make every breath count.

I would love to hear how others are living their best life right now. Please share 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.