Accepting that IPF exacerbations can be out of my control

Despite her proactivity, a columnist realizes she can't always avoid lung irritation

Charlene Marshall avatar

by Charlene Marshall |

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Not having control over a situation is one of the worst feelings; I wouldn’t wish it on anyone! Unfortunately, many patients living with chronic illness often feel this way, and we just have to learn to live with it.

Following my 2016 diagnosis of idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease, I had to learn the hard way what bothered my lungs. This process took several years and much effort from me and my medical team. It was anyone’s guess how I’d react to new irritants, as no two IPF patients are identical.

Seven years post-diagnosis, I’m now acutely aware of what worsens my breathing, and I actively avoid all triggers. For the most part, being proactive helps me remain stable and avoid exacerbations. However, I recently realized that my efforts aren’t always enough.

Last week, I was running some errands at the mall. Like many with IPF or a transplant, I continue to wear a mask in crowded places because COVID-19 is still a threat for high-risk patients like me. Thankfully, my mask helped me avoid inhaling secondhand smoke when someone walking in front of me lit a cigarette. That’s when I realized that, unfortunately, lung irritation and IPF exacerbations can be out of my control.

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Annual activities highlight changes in my lungs due to IPF

In addition to cigarette smoke caused by people lighting up where they’re not permitted to do it, the following irritants can also lead to an acute exacerbation and emergent situation for me.

Wildfire smoke

Although it’s only June, Canadian wildfires are already breaking records. We’ve had exceptionally hot and dry weather here, which unfortunately caused some minor fires to expand rapidly, engulfing millions of hectares. The smoke is making it hard to breathe, especially for those with lung conditions like IPF.

Smoke, whether it’s from cigarettes or wildfires, is exceptionally triggering for my lungs. While I know the wildfire situation is out of my control, it’s hard not to feel frustrated and fearful that I’ll end up sick unless it’s brought under control soon.

COVID-19 and other viruses

I’ve had COVID-19 twice, and both times I sustained irreparable damage to my lungs. Unfortunately, any virus or bacterial infection poses a risk to my lung function. I do everything I can to avoid exposure to illnesses, especially during cold and flu season, but I realize that some people carrying viruses are asymptomatic and unaware that they’re sick.

One good thing that’s emerged from the pandemic is a greater general awareness of the importance of staying home when you’re sick. Unknown exposure to illnesses is another situation that’s out of my control, no matter how proactive I am.

Allergens

Friends and family often tease me about how neat and tidy I keep my home. While I do appreciate living in a clean space, the reason for my behavior goes beyond preference: Dust is another irritant for my lungs. I’m grateful to be able to control this, for the most part. However, I can’t control outdoor allergens like pollen.

In addition to record-breaking wildfires, this year here in Ontario has also been exceptional for pollen, which has been especially difficult for those of us with respiratory conditions. It’s been hard to accept that the state of my health is often beyond my control.

What irritants bother you as an IPF patient? I’d love to hear from you!


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.

Comments

Steve Dragoo avatar

Steve Dragoo

Hi Charlene,

I feel ya. Almost any chemical smell can bother me and over here there are a lot of fake smells I don't tolerate. Son/daughter-in-law came over and he was wearing cologne - instant headache - had to ask them to leave. I think I'm going to invest in a bubble suit soon.

Talk soon...
Steve

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Peggy Anderson avatar

Peggy Anderson

The smoke has aggravated many people with i P F. I am currently in a bit of a mess low sats and now enitirely dependent on POC but they can’t figure out what is causing it. Say it could be an acute exacerbation,inflammation ,mild fluid on lungs and possible pulmonary hypertension. I am home now waiting for follow up. Two weeks ago I was walking around no problem but oxygen sats lower on stairs. Now I am totally dependent on POC. Has anyone heard of this? I was sent home from ER with no treatment plan first appt was given was for July 25 and I an trying to get it changed to sooner than that as the situation is worsening

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