The long, bumpy road to a pulmonary fibrosis diagnosis

When my husband, Donnie, started exhibiting concerning symptoms in early 2021, we initially attributed it to a lack of exercise during the pandemic or possibly long COVID-19. The initial shortness of breath he experienced seemed innocent enough, so he shrugged it off as a reminder that he probably needed to get back to the gym.

As the months rolled by and spring turned to summer, then summer to fall, he began developing a relentless dry cough that I can only describe as sharp and “barky.” Although it irritated him, he didn’t feel ill and was mostly unbothered by it.

One day, he was standing in the kitchen and happened to gaze at a pulse oximeter I’d purchased when our daughter was ill with pneumonia a few months earlier. He clipped it to his finger, and his oxygen saturation was 93%.

We were somewhat familiar with what a normal oxygen saturation should be (between 95% and 100% for a man his age), so we decided to drive to the closest urgent care clinic for an examination. The doctor listened closely to Donnie’s lungs and said he was pretty sure that my husband had a case of atypical pneumonia. A radiograph seemed to confirm the diagnosis, and we left the clinic with a prescription for antibiotics, a referral to a primary care provider, and some peace of mind.

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A short time later, we had the appointment with his new primary care provider, who reassured us that he thought my husband’s symptoms would resolve over time. After a spirometry, the doctor concluded that Donnie was likely experiencing adult-onset asthma and prescribed some additional medications, including an inhaler.

As the months wore on, Donnie’s symptoms worsened, and his health noticeably declined. A seemingly harmless cough had rapidly evolved into something much worse. Sleep was almost impossible. He spent several hours violently hacking each night before finally collapsing into an exhausted rest that lasted only two or three hours before he had to get up and drive to work. We tried everything we could think of: cough drops, cough medicine, cough pearls (benzonatate), Vicks VapoRub, humidifiers, special teas, and in a moment of utter desperation, alcohol. Nothing helped.

Another miss, then answers

I watched as my previously healthy, active 36-year-old husband became a shell of himself as his cough and the lack of sleep turned him into a zombie. His ribs, back, and diaphragm ached from the ceaseless coughing, and depression and hopelessness crept in.

About that time, I first read about pulmonary fibrosis (PF). Donnie exhibited almost every symptom of it: cough, breathlessness, fatigue, and even digital clubbing. Neither of us had heard of nail clubbing, but my heart sank when I saw a picture of it. I knew then that there was a good chance he had PF.

With no precise diagnosis or relief in sight, we decided it was time to visit a different doctor for a second opinion. I shared my concerns about PF with that doctor and pointed out the changes in Donnie’s fingernails. But the doctor didn’t think we needed to worry. He prescribed some different inhalers to try, and told us to schedule a follow-up appointment. Each month, we’d visit the doctor, report that the symptoms hadn’t improved, and schedule another follow-up. After several months of trying new inhalers and medications, we decided it was time to find a new doctor.

A few days later, we walked into the office of a third (and our current) primary care provider. For the first time on our journey, the doctor fully listened to our concerns. Donnie said that none of the medications he’d been taking helped his symptoms. I shared my fears about PF. This doctor immediately scheduled a high-resolution computed tomography scan and referred Donnie to an excellent pulmonologist whom he knew personally. He prescribed sleep medication and gently told my husband that his oxygen saturation was dangerously low and he needed to immediately begin using supplemental oxygen. Initially shocked by the rapid pace of events, we eventually felt that a plan of action was falling into place.

That night, with the help of his newly prescribed supplemental oxygen and prescription medication, my husband was able to sleep restfully for the first time in over six months. As we fell asleep next to one another that night, I felt a mixture of emotions: I was scared of the potential diagnosis, but thankful that we seemed to be on the right track.

That long, hard day was just the beginning of my husband’s PF diagnosis journey, but it was also a huge turning point that helped us put the pieces of the puzzle together. For the first time in months, I felt a glimmer of hope.

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.