IPF taught me to express gratitude for each new day
When your days are numbered, each one becomes more special
Early last week, the temperature here at Lake Anna, Virginia, was in the mid-80s, which was uncharacteristic for an October afternoon. By the end of the week, the highs were barely above 50 F, and frost would greet the morning sun. I started each day with a sense of awe that I am here to share my story.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, the journey ahead of me wasn’t clear at all. My care team shared their treatment plan with me, and I was committed to my role in it, but I still faced a great deal of uncertainty.
During this time, I developed an appreciation for each new day and began to express my gratitude. I am not certain you can fully understand that appreciation until your days are numbered.
On the day of my diagnosis, I heard several remarks that were etched into my memory. First, doctors explained that IPF is a chronic, progressive disease with no cure. Next, they told me the life expectancy for IPF patients is generally three to five years. Finally, they advised me to get my affairs in order, which I took care of immediately.
When I was first approved but deferred for a lung transplant in the spring of 2020, I was more than three years into my journey. But COVID-19 was sweeping the globe, and I wasn’t sick enough to require surgery at the height of the pandemic.
One year later, I was listed for a lung transplant. My condition had begun to decline rapidly, and I required 7 liters per minute of supplemental oxygen while at rest. People would ask how I was doing, and I’d jokingly reply that I woke up breathing on my own. Each day felt more and more special to me.
When I received my bilateral lung transplant on July 10, 2021, the surgery began at 3 a.m. and lasted for more than eight hours. I remained sedated and on a ventilator until 5 p.m. the next day. Lying in bed in the cardiovascular intensive care unit on the morning of July 12, I watched the arrival of another new day. Overwhelming doesn’t begin to capture the emotion of the moment.
Each new day is a gift made possible by my donor and donor family.
Gratitude in the rare disease community
The sentiment that each day is a blessing is not unique to the pulmonary fibrosis community. One thing I enjoy about writing for BioNews, the parent company of Pulmonary Fibrosis News, is the range of rare disease publications it offers. I can read columns written by patients, parents, and caregivers who share my appreciation for each new day and express that gratitude through their writing.
Make no mistake: Some days it’s hard to be grateful. When you lose a friend to PF, have to undergo an uncomfortable procedure, or receive disappointing test results, it may be more difficult to demonstrate thanks. In my experience, those difficult days pass. If they begin to pile up, it may be time to seek additional help from a support group, social worker, or doctor.
You may find this shocking, but there are days when I am not my best self. When that happens, I commit to doing better. But I’m always grateful for the gift of life I’ve been given. Each new day is a chance to make every breath count.
Do you appreciate each new day or do you struggle to express gratitude? Tell me more 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.