Do These Symptoms Mean My Disease Is Worsening?
Living with a chronic illness is not for the faint of heart. In addition to the physical and emotional aspects of having a life-threatening lung disease like idiopathic pulmonary fibrosis (IPF), there are also many mental challenges. As patients, we’re often forced to face our fears, especially during acute events like an exacerbation or as our disease worsens.
For the most part, the fears I have about IPF now are different from when I was diagnosed in 2016. Back then, I was fearful of having to use supplemental oxygen, developing a chronic cough, or being short of breath. I have now experienced each of those things, and with time I have learned to navigate them, causing my fears to dissipate. The physical aspects of IPF have become a lot more manageable for me than the mental ones.
One fear that has been fairly consistent throughout my seven-year journey with IPF is that the disease will rapidly progress. Unfortunately, since I’ve begun interacting with fellow patients in the pulmonary fibrosis community, I’ve seen what disease progression looks like. I’ve witnessed how cruel IPF can be and what it does to patients and their caregivers as it worsens.
I have been experiencing unusual symptoms in the past few months and fear it may be because my IPF is worsening. Thankfully, I have a community to rely upon to better understand what symptoms might indicate disease progression.
I’m curious to hear from other patients whether you have experienced the following as your IPF worsened:
Sensitivity to smoke
In recent years, inhaling secondhand smoke has been problematic for me and occasionally even required a trip to the emergency room. While unpleasant, I didn’t always need a breathing treatment to open my airways and relieve the cough it triggered. But now I do.
Since getting COVID-19 for a second time, my lungs no longer tolerate secondhand smoke at all. Each time I’ve accidentally inhaled it, I’ve ended up in the ER on the verge of a respiratory crisis. Not only does it trigger a cough, but I also feel a burning sensation and heaviness deep in my lungs that takes time to subside. I can’t help but wonder if getting COVID-19 a second time increased the sensitivity of my lungs to foreign substances or smells, such as secondhand smoke. I also wonder if this intolerance is just disease progression.
Wheezing with exertion
Most patients with IPF experience dyspnea, or shortness of breath, with physical exertion, myself included. In the past few months, it’s been increasingly obvious when I am exerted because I can hear myself wheezing when I try to catch my breath. This doesn’t come and go, but rather is constant, which leads me to believe it’s not an infection or a virus working its way through my lungs. This symptom is on a list of questions I must speak with my pulmonologist about, and I suspect he may tell me that it means my lungs are worsening.
When patients are chronically underoxygenated, their vital organs don’t get enough oxygen-rich blood, which causes physical fatigue. Until recently, I had strategies to help me combat fatigue, such as wearing my supplemental oxygen when I had important meetings or social events, prioritizing time for power naps, or asking for help with physical tasks to preserve my energy. I have noticed in the last several months that these strategies are becoming a lot less effective, and I am often unable to push through it; I simply must give in to the fatigue. To me, this inability to combat the fatigue is an indicator that my body isn’t as healthy as it once was, even in the early days of living with IPF.
The brain is one of those vital organs that doesn’t get enough oxygen-rich blood when a patient with IPF is underoxygenated, which can cause things like brain fog or memory lapses. I would guess that headaches are probably due to the brain not getting enough oxygen. I have been experiencing an increase in headaches lately.
I have been intentional about tracking these headaches, as this symptom can be attributed to many different things. However, my headaches almost always improve, albeit only slightly sometimes, when I put on my supplemental oxygen. This leads me to believe that my lung function is worsening and I need more oxygen as a result.
Have you experienced any of these symptoms? If so, were they indicators of your IPF worsening? Please share 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.