How I’ve overcome adversity on my IPF journey
A columnist shares the main challenges he's faced before and after transplant
Adversity is something rare disease patients face on a regular basis. It can take many forms, but it often involves facing a challenging situation or doing something against all odds.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I don’t think I had any idea of the adversity that would be a part of my journey. At 59, I was well established and successful professionally. I had fully expected to continue working for several more years, but the health issues that developed in the nine months following my diagnosis resulted in me going on disability in September of that year.
This was an adverse event, a challenge I hadn’t expected. But I soon learned that not all adversity is created equal, especially for an IPF patient. I faced two primary difficulties during the pre-transplant portion of my journey.
I learned I had obstructive sleep apnea shortly after I was diagnosed with IPF. My doctor prescribed a continuous positive airway pressure, or CPAP, machine to alleviate periods of breathing irregularities.
The second challenge was gastroesophageal reflux disease (GERD), which occurs when stomach acid flows into the esophagus toward the mouth. IPF patients have a higher incidence of GERD than the general population. I take Protonix (pantoprazole) twice daily and have an endoscopy every five years to determine if GERD has caused any damage to my esophagus.
I overcame both health issues and continue to manage them today.
After my bilateral lung transplant in July 2021, my care team worked hard to suppress my immune system to prevent the rejection of my donor’s lungs. Being more vulnerable to illness and infection has been tough.
This was further complicated by the COVID-19 pandemic. To date, I’ve received five vaccine doses. My care team also prescribed Evusheld (tixagevimab and cilgavimab) to help prevent COVID-19. I avoided the virus for more than three years, but it finally caught up to me in April. I believe the vaccines and preventive infusions were key to how mild the illness was for me.
More broadly, any health exacerbation is a form of adversity. Pneumonia was my first major issue post-transplant. More recently, my care team has had to address my narrowing bronchial stem head-on. When balloon dilations failed to provide the necessary rehabilitation, a stent was inserted in the airway. The plan is to have the stent train the airway to stay open.
I continue to manage each of these post-transplant challenges today.
Adversity in the rare disease community
While adversity is common in the rare disease community, so is resilience. I’ve met patients in person and virtually who’ve been very clear that they’re in it to win, to be as successful as possible on their health journey.
Shortly after my diagnosis, I said out loud that I wasn’t interested in playing “why me?” I had to deal with IPF because I had it. I see that same spirit here at Pulmonary Fibrosis News and the other rare disease websites published by BioNews.
As I was doing prep work for this column, I searched for a well-known figure who has faced adversity. Coincidentally, it turns out that today, June 27, is Helen Keller Day. Keller, who was blind and deaf, is a perfect example of overcoming adversity. Sharing these examples is one way I can make every breath count.
What adversities have you faced and how did you overcome them? 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.