My Theory on How I Developed IPF
When I was diagnosed with idiopathic pulmonary fibrosis with dendriform ossification in 2014, it was the second time I had a medical condition with an unknown cause. Three years earlier, I developed blood clots and had two pulmonary embolisms. Again, a reason for them couldn’t be determined.
These unknown health issues concerned me, and I wondered if the two incidents could be related. So, it became my mission to find a reasonable explanation.
Over the last six and a half years, I gathered bits of information from doctors, test results, and pathology reports, and by researching pulmonary fibrosis (PF) and analyzing all of my health problems over the years. I pieced together this information into a jigsaw puzzle theory I believe is viable. My hypothesis cannot be proven, but it also can’t be disproven.
Gathering the pieces
During a December 2014 appointment, my interstitial lung disease pulmonologist believed the ossification was caused by aspiration of stomach acid into my lungs. Most likely, this aspiration probably happened at night when I was sleeping. This knowledge provided two clues: gastroesophageal reflux disease (GERD) and obstructive sleep apnea.
Previously, I didn’t have any heartburn symptoms, which would indicate GERD. But in September 2014, I had a sleep study done that diagnosed me with sleep apnea. A 2016 study showed that 78% of patients with sleep apnea had acid reflux symptoms. Interestingly, the mean heartburn score decreased by 62% among those with sleep apnea who were strict users of their CPAP therapy.
I deduced that my sleep apnea caused the aspiration, which caused the ossification, and that became my first puzzle piece. With the origin of my ossification defined, next I looked at the cause of my blood clots.
In September 2011, I was diagnosed with two pulmonary embolisms (PE), one in each lung. Also, I still had a blood clot in my right calf. At the time, doctors couldn’t state a reason for the development of the clots. In January 2015, I developed another PE in my left lung.
In an article titled “IPF and Pulmonary Embolism: Is there a Connection?” Dr. Jeremy Feldman wrote, “In one large study, which involved over 200,000 people with idiopathic pulmonary fibrosis, 3815 people with IPF also had a diagnosis of VTE [venous thromboembolism]. The results indicated that the risk of developing a VTE was 34 percent higher in people with IPF than in the general population.”
Therefore, I can reasonably believe that my development of IPF caused the PEs. This information is the first accurate indicator that my IPF started in or before 2011. Therefore, the second puzzle piece is defined, with PF being the logical reason for my blood clots and PEs.
My lung biopsy reports provided a couple more bits of information for the puzzle. A report from the Mayo Clinic discussed ossification and aspiration, which supported the first piece of the puzzle. A biopsy report from the Barnes-Jewish Hospital stated, “He has had slowly progressive interstitial lung disease, dating back to at least the early 2000s.” This report established a start date for my IPF progression.
Jigsaw puzzle hypothesis
My premise is that my IPF commenced in the mid-2000s. I had sleep apnea in the mid-2000s, but ignored it. Unrecognized, the sleep apnea caused aspiration of stomach acid into my lungs, which caused the ossification deposits in my lungs.
The damage to my lungs continued, and subsequent indications of IPF were the pulmonary embolisms in 2014. Unfortunately, the reason for the blood clots was not determined at the time.
In 2012, I had a severe case of pneumonia, which landed me in the hospital. I saw my first pulmonologist with this new illness, which eventually led to my IPF diagnosis in 2014. Hindsight suggests that developing IPF caused my pneumonia.
By fitting together the IPF comorbidity puzzle pieces — sleep apnea, GERD, and blood clots — the progression of my IPF became clearer:
- 2002: Sleep apnea
- 2002: Aspirations (GERDS)
- 2011: Blood clots and pulmonary embolisms
- 2012: Pneumonia
- 2014: IPF diagnosis
Although it can’t be proven, having a theory is better than saying the cause of my disease is unknown. Now I can accept my health issues, whereas before I would wonder why I developed this awful IPF. Not knowing was depressing, and I wondered when the next unknown issue would arrive.
Each person’s IPF is different. I suggest you find your puzzle pieces and make your jigsaw puzzle hypothesis. It could provide a calming effect and lead to a better understanding of your condition.
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.