We had to learn the ABCs of IPF after my late husband’s diagnosis

I remember how exciting it was as kids when Mom served us alphabet soup, seeing all those little letters we were trying to learn. My late husband, Steve, and I felt like we were looking at a bowl of that soup when we started researching idiopathic pulmonary fibrosis (IPF) after his diagnosis.

Pulmonary fibrosis (PF), interstitial lung disease (ILD), and pulmonary hypertension (PH) all had acronyms that were new to both of us. There were other confusing terms and abbreviations, too, such as oxygen (O2), forced vital capacity (FVC), oxygen saturation of peripheral blood (SpO2), and diffusing capacity of the lungs for carbon monoxide (DLCO).

The only one I was familiar with was O2, but I only knew what it was, and not how Steve would eventually use it. There was a huge learning curve for both of us. A glossary and abbreviations list on the Pulmonary Fibrosis Foundation’s website became a starting point for our research.

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Testing and diagnostics

Testing for PF also involves many acronyms. Generally, the diagnostic process starts with a chest X-ray (CXR) and a high-resolution CT scan (HRCT), both of which can be performed in the imaging department at most medical centers. The CXR may show signs of PF, but the HRCT is the gold standard of imaging, as it allows us to view thin slices of the lungs (like slices of a loaf of bread). Most people have heard of these two tests.

Pulmonary function tests (PFTs) are conducted in the pulmonary function lab within the respiratory department. These tests measure lung function, including FVC, but they can seem a bit odd — requiring patients to sit in a small, airtight chamber with a clip on their nose as they breathe through a mouthpiece. As they inhale and then exhale (until they can’t exhale anymore), a PFT also measures the transfer of gases from the lungs to the bloodstream.

A six-minute walk test, or 6MWT, may be performed in a pulmonologist’s office or in a hospital’s respiratory department. This test can help determine if a person needs supplemental oxygen. Although there is a general protocol, it may vary slightly from operator to operator.

Right heart catheterization (RHC), left heart catheterization (LHC), ventriculogram, and coronary angiogram procedures typically take place in a cardiac catheterization laboratory. A physician can measure the pressure, blood flow, and function of the heart and coronary arteries, as well as look for evidence of blockages.

Learn as much as you can

I urge people to learn as much as they can about PF so that they can be their own advocate. Steve and I met many medical professionals who knew little, if anything, about this interstitial lung disease back in 2009 — especially in emergency rooms. “Your oxygen can’t be that high,” they would say when we told them to set it to 6 liters/minute (L/m). The best offense in this “game” is to gain as much knowledge as you can.

Steve was first studied in the catheterization lab because the symptoms he experienced while hiking pointed to congestive heart failure (CHF) or coronary artery disease (CAD). Thankfully, when those tests came back normal, an astute cardiologist immediately ordered a chest X-ray.

Due to my career in healthcare, specifically as a radiographer and cardiology services manager, I was familiar with many of these acronyms; however, I was not aware of all of them. This gave us a slight advantage, but we still had to conduct extensive research and seek out relevant resources. I wish there had been somewhere to turn for help in determining the next steps and understanding what the journey would be like.

After retiring early, Steve learned a great deal from browsing the internet and joining Facebook groups. Today, I offer assistance to others through the virtual support group that I lead. I don’t provide medical advice because I’m not a physician, but I offer advice based on my own experience and always recommend that patients consult with their healthcare providers before making any changes or trying new treatments.

After completing all the medical tests, it’s time to go home and learn as much as possible about the journey ahead. Perhaps you may even find some comfort in a bowl of alphabet soup.

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.