Let’s talk about the scary moments we face on our IPF journeys
After my diagnosis, I felt overwhelmed and anxious
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Boo! A diagnosis of idiopathic pulmonary fibrosis (IPF) or any other interstitial lung disease (ILD) can be scary. With Halloween approaching, October seems like the perfect month to talk about why.
When I was diagnosed with IPF in January 2017, I knew nothing about the disease, but I quickly learned that it’s chronic, progressive, and incurable. Even though I had complete confidence in my team and the treatment plan they shared with me, the reality of IPF was still scary.
Today, I am a moderator for the Pulmonary Fibrosis News Forums, and I spend time looking at social media posts related to pulmonary fibrosis and other ILDs. I see so much anxiety, especially from newly diagnosed patients.
I learn a lot reading other people’s perspectives, but I also have a unique point of view based on where I am in my own journey. From the earliest days of my diagnosis, I wanted to pursue a lung transplant, which shaped my care plan.
So what was scary?
The moments that scared me
The first thing that frightened me was how overwhelming everything felt. After my diagnosis, I reviewed my list of appointments and looked at my wife, Susan, with an expression she wasn’t used to seeing. I’m not boasting, but I don’t typically get scared. Initially, the list seemed impossible.
I used basic time-management techniques and the available transplant clinic resources to schedule the myriad appointments. I realize “myriad” is vague: The typed, single-spaced list took up three-quarters of a page.
Some appointments were for procedures I didn’t recognize because they were described in medical terms. Instead of stressing over the names, I asked my care team to explain what each procedure entailed. I asked questions about everything from anesthesia to recovery time, when relevant.
The second most daunting set of requirements I received was a list of immunizations required for the transplant program at Inova Fairfax Hospital in Virginia. I had already received some as a child and a young adult, but I got the boosters I needed as well as any vaccines I hadn’t received before.
During the spring of 2020, COVID-19 began to spread across the U.S. I received multiple iterations of the COVID-19 vaccine. Although it was new, I was required to get it to remain on the transplant list.
As with procedures, if you have any concerns about specific immunizations, talk to your care team. Make sure your concerns are addressed and that you understand the benefits, any potential risks, and the consequences of declining a vaccine.
These are just a few examples of scary moments from my journey. I am sure that each of you can recount times when you felt scared or anxious. I want to invite you to share those with others in the Pulmonary Fibrosis News Forums, where you have the opportunity to start a dialogue with other members. You may learn how someone else faced a scary moment, or your suggestion may help relieve someone else’s anxiety. Using the forums requires registration, which is free.
Learning and sharing information with each other helps all of us make every breath count.
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.
Mary T Walter
What is scary about my IPF journey? I was diagnosed in late 2020, shortly after a move from sea level (West Coast) to Colorado. Had never heard of this disease prior to that. I had experienced YEARS of pneumonia--every winter. I admit I worked hard in my job (in the Catholic church and as singer at church. When I heard the 3-5 year timeline, I was shocked but the next five years passed quickly with my using oxygen at night (2L) and a small portable machine when I exercised. Never needed oxygen when I visited home (West Coast). Never got sick the entire five years. Mid-2026, after a lung capacity check, I was placed on OFEV. Still only needed oxygen at night and at exercise. OFEV has been extremely difficult--started it in June and had to stop because my liver enzymes rose too high. Stopped for a month, enzymes reduced and I started again. While the diarrhea and gastric effects were worse than before, I really tried but it got so bad, the Doc recommended I stop for two weeks and then check enzyme levels and discuss other options. This week, I contracted a terrible cold and the IPF cough came on strong. That's when I got scared. Is this is? Is this when I go downhill quickly? I had a sore throat, a headache, body aches and the cough wouldn't go away. I was afraid to take OTC meds due to the liver enzymes, I wasn't sleeping because of the cough. I finally found the benzonatate cough drops, took one, and took one aleve gel. The cough went away and has only returned a bit. So, it was a scary two or three days, and being that scared resulted in my being even more scared. Surprised myself. I've calmed down, I have an appt with my Doc in four days and decisions will be made.