From diagnosis to treatment: What life with PF is like, part 1

First in a series.

If you’ve read my previous columns, you’ll know I live with lymphocytic interstitial pneumonia (LIP), a rare interstitial lung disease. What you may not know is how uncommon it is for LIP to progress into pulmonary fibrosis (PF), and yet, I am part of that small percentage of people to whom it happens.

I’m writing this column because PF, and the journey to diagnosing it, deserve more attention. Too often, we talk about outcomes without acknowledging what patients endure just to get answers.

Obtaining my diagnosis wasn’t simple or quick. It involved countless appointments, much uncertainty, and a series of medical procedures that tested both my body and my emotional resilience. Like many patients with interstitial lung disease (ILD), I began with the common diagnostic tools, for example, extensive laboratory work, high-resolution CT scans, chest X-rays, and a bronchoscopy. Eventually, those steps led to the most invasive part of the process, an open lung biopsy.

At the time, these procedures felt overwhelming, but I knew they were necessary. Today, I’m encouraged to see that diagnostic methods are becoming less invasive, which may spare future patients some of the physical and emotional strain I experienced.

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Paying attention to the signs

In this column, I want to walk you through the diagnostic and research methods currently used to identify ILD and its underlying causes from the perspective of someone who has lived through each step.

My first encounter with what would become a long diagnostic journey began in 2016, with a sleep apnea test. What stayed with me most wasn’t the test itself, but rather the frustration of feeling unheard.

I was referred to a pulmonologist because of symptoms I didn’t yet recognize as signs of lung disease. I struggled to take deep breaths, lived with constant fatigue, and endured the most horrible cough I had ever experienced. It was frightening enough that I knew something was wrong.

A sleep apnea test was the last thing I wanted to undergo, but I reluctantly agreed. When the results showed no signs of sleep apnea, I was left with more questions than answers.

The next theory was asthma. I was prescribed several inhalers, each meant to be a solution, but none of them helped. My cough persisted, and my shortness of breath (dyspnea) worsened. My body signaled that something was missing.

It took three long years before I found a pulmonologist who truly listened to me — someone who paid attention not just to test results, but also to my lived experience. That moment changed everything.

That was when the real series of examinations, tests, and procedures began, each one bringing me closer to an answer I both needed and feared.

It began with a series of pulmonary function tests. These included spirometry tests, which measure lung capacity and the speed at which air moves in and out of the lungs, as well as a six-minute walk test. On paper, these tests seem simple. In reality, they are exhausting. You are asked to push your lungs to their limit, to blow harder, longer, deeper, all while knowing something inside you isn’t working the way it should.

From there, the imaging began. I underwent several high-resolution computed tomography scans. Most were performed without contrast because of my iodine allergy. No matter how many times I was asked to lie still and relax, being slid into a tube, open or closed, triggered intense anxiety. Claustrophobia does not disappear just because the test is medically necessary. Each scan became a quiet battle between my need for answers and my body’s instinct to panic.

Next came the bronchoscopy. This procedure allows doctors to look inside the airways and collect samples to help identify the type of interstitial lung disease present. I remember thinking this one might be easier because I would be placed under general anesthesia. In some ways, it was. But waking up with a painful sore throat and lingering hoarseness for several days was a reminder that even “routine” procedures have a physical cost.

Finally, the decision was made to perform a lung biopsy, the most invasive step. Surgeons removed a small piece of my lung tissue for examination, which required a two-day hospital stay. By that point, I was emotionally and physically drained. I wanted the testing to stop. I wanted someone to tell me all of it had been unnecessary, that nothing was wrong, that I did not have a lung disease, that I did not have pulmonary fibrosis.

The tests were meant to give me clarity. What I didn’t understand yet was that clarity would bring a new series of procedures, monitoring, and decisions that would shape the rest of my life.

Next week, I’ll share what happens after the diagnosis, and how monitoring, treatments, and procedures become part of daily life with pulmonary fibrosis.

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.