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.
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