In honor of Pulmonary Fibrosis Awareness Month, I’d like to tell you, in my own voice, what it’s been like living with a terminal lung disease as a young woman. Naturally, I felt very alone, unsettled, and isolated from my peers when I was diagnosed. Sharing about my experiences, however, has not only helped others, it’s also helped me live with IPF. Here is my story—listen along or read!
After returning home from an overseas vacation in early 2015, I found myself persistently short of breath, fatigued, and dealing with a cough that wouldn’t subside. My career at the time involved working with children, so naturally, I assumed my constant exposure to their germs was the reason I was getting sick so often, or that the virus I had just wouldn’t clear. I had also spent nearly a month overseas and over 15 hours breathing in recycled air in a plane returning home, so I didn’t think much of the fact that I’d gotten so sick. A variety of prescribed inhalers, steroids, antibiotics and other medications only alleviated my symptoms for short periods of time and then they would resurface.
Despite that, I went overseas again toward the end of 2015 and after being so active my whole life, I knew something was wrong with my lungs when I had to stop during the climb to the top of the Sydney Harbor Bridge. It wasn’t a strenuous climb and I remember counting in my head how many more minutes until the tour guide stopped the group to point out some sights throughout the harbor. At that moment, I knew I’d need to go back to the doctor and push harder to convince them that the symptoms I was experiencing were not just viral.
I returned home from Australia and went to the doctor in December 2015. There, I shared the struggles I’d been having with my lungs and that I was fearful of how difficult it was becoming just to breathe. This was the first time I remember the nurse putting a probe on my finger to measure my oxygen saturation, and it was the first real external indicator that something wasn’t right. The reading was 91 and my non-medical brain compared that number to grades in school; I thought 91 was pretty good, unaware that for someone my age, their saturations should be 97 or higher.
The doctor sent me to the Emergency Department right away for further diagnostic imaging, tests and blood work, which would be read right away, as opposed to waiting for the results as an outpatient. Things were very confusing at this time for me, and I remember wondering why I was being admitted, because I didn’t feel particularly worse than I had in the months prior. I re-told the story of where I’d travelled in the past twelve months, along with what I did at each destination to multiple doctors. I told them about my career, where I’m regularly exposed to germs and then re-iterated how persistent my symptoms had been throughout all of 2015.
By the time I was seen in the Emergency Department, I’d been experiencing shortness of breath, fatigue, and a chronic, pesky cough for nine months. We reviewed my previous doctor’s visits and prescriptions in great detail, and in order to alleviate some of my acute symptoms and open my airways, the doctor gave me multiple nebulizer treatments to try and improve my ability to breathe. I was released the next day with several outpatient appointments set up: HRCT (high-resolution CT Scan), an appointment at the adult asthma clinic, PFTs (pulmonary function tests), more blood work, and a meeting with a specialized respiratory physician at a hospital about an hour away from me.
It was April 7th, 2016 that I was diagnosed with Idiopathic Pulmonary Fibrosis, also known as IPF. I was only 28 years old.
This is part 1 of a 4-part series. Stay tuned to find out why I chose to write about my experience, why PF Awareness Month is important to me, and how you can spread the word about IPF.
Please don’t hesitate to reach out by leaving a comment below. I look forward to hearing from everyone while I continue to share my story with you all.