How Pulmonary Fibrosis Complicates Simple Appointments and Everyday Tasks
The progression of pulmonary fibrosis is making once simple tasks difficult for columnist Charlene Marshall
By definition, a progressive illness is one that worsens over time. When I was diagnosed in 2016 with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease, I was told by a pulmonologist that simple tasks would become difficult as the fibrosis in my lungs worsened.
Before IPF, I rarely got sick, so I had no experience with how knowledgeable a specialized lung doctor was about these types of illnesses. He also didn’t know me and my energetic personality, so I wasn’t concerned when he gave me that warning six years ago. In hindsight, it was wrong not to take him seriously from the beginning.
Shortly after my diagnosis, I started taking medications to manage IPF, including some that suppressed my immune system. This meant it was easier for me to catch viruses or have infections, but I didn’t bother taking extra precautions. Once I had the side effects of Ofev (nintedanib), an anti-fibrotic therapy, under control, I resumed normalcy in my life.
But due to not taking my disease seriously, I fell ill in the spring of 2017, and my experience in the intensive care unit whipped me into shape. I suddenly became proactive in whatever I needed to do to protect my lungs from getting that sick again.
Over the years, I’ve noticed that things have become increasingly difficult for me due to the progression of pulmonary fibrosis, but I tend to find workarounds. I’m starting to slow down, or rather, this disease is forcing me to slow down. It’s hard to accept this as a young adult, and the workaround options are becoming fewer as my IPF worsens.
For people with advanced IPF, many simple tasks get progressively harder. If someone had asked me before what types of things are difficult for lung disease patients, I doubt I would have guessed correctly. The difficulties extend to simple tasks and nearly every aspect of our lives. Patients reach a point where it becomes impossible to forget that we have this debilitating disease.
Last week, my schedule was full of appointments. Whether because of summer vacation schedules or just bad timing, everyone suddenly seemed available for the appointments I needed. During the sessions, the progressive nature of IPF was more evident than ever, as I had difficulty getting through most of them, despite the minimal effort they required.
Following are some of the simple appointments that have become complicated due to the progression of pulmonary fibrosis:
Going to the dentist never used to make me anxious. I didn’t mind it, and probably much to the dismay of the staff, I found ways to continue talking with my mouth open while they cleaned my teeth. But I no longer like trips to the dentist, and my appointment last week was extremely difficult and caused great anxiety.
Lying flat in the chair with my head tilted back and mouth open caused some of the worst shortness of breath I’ve ever experienced. It seemed hard for others to understand why I felt this way, because shortness of breath often is associated with cardiac exercise, yet all I was doing was lying down. This experience was exhausting and frustrating for both the dental hygienist and me, although she remained professional and compassionate throughout my appointment.
While this appointment isn’t crucial to my health, I enjoy the simple pleasure of having my nails manicured once in a while. For the first time, the strong smell of acetone in the salon caused me to repeatedly cough and clear my throat. Despite having a mask on and ensuring others I didn’t have COVID-19, it seemed that some of those present didn’t appreciate the frequency of my IPF cough.
Despite my disease worsening, I still try to do grocery shopping independently. I enjoy it, and as long as I don’t rush, I can manage it on my own. Unfortunately, when I’m packing my groceries after paying for them, people behind me in line tend to rush me, which is upsetting and causes me to be short of breath. I never would have thought that the simple task of bagging groceries would leave me exhausted and struggling to breathe.
I’m curious to learn what simple tasks the progression of pulmonary fibrosis has made difficult for you. Please share your experiences 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.