The Beginning

I think the best place to start with this entire story is with the first doctor appointment that triggered everything. In early 2017, we’d noticed that Danny was getting winded easily and coughing a lot more than usual. The cough seems to have always been there, but the airway restriction that accompanied it was always chalked up to Asthma. So, on Jan 4, he went to urgent care at St. Mary’s in Janesville. After an x-ray of his lungs returned some dicey results, they suggested he see a Pulmonologist at St Mary’s in Madison.

Our first appointment with our Pulmonologist was two days later. Before the appointment Danny did his first lung function test and a CT to get a better look at his lungs than what the x-ray could show. We knew that there was some kind of fibrosis, but he would need a bronchoscopy to get a tissue biopsy for further testing.

On February 9th, we showed up bright and early ready to be in and out! Generally speaking, the bronchoscopy is a fairly routine procedure with very little risks. Time flew by as my dad and I sipped coffee and chatted in the waiting area. Once he was back in a recovery room, he was groggy but very vocal about how disgusting the throat numbing spray was. He says it’s imperative that I share that part, because he still gags just talking about it. It’s normal for them to monitor you for a few hours after the procedure. Things went south when we realized his chest was making a weird, bubbling sound when he would breathe. Another x-ray later, we learned he had a Pneumothorax (collapsed lung). This isn’t uncommon when the lung tissue is damaged like his. Luckily, it wasn’t too bad, and they expected his body to simply absorb the air and resolve itself, but it did mean an admission to the hospital for a night. The best part of this whole portion of the story is that the biopsy wasn’t enough for a clear diagnosis.

Bring on the Thoracoscopic Wedge Resection (TWR)! On the 27th, we were back for another biopsy followed by a required two-night stint at the hospital for observation. His recovery went pretty well. As newbies, we learned quickly that chest tubes sound really gross, but serve a great purpose. We also learned that some pain meds make him more miserable than the pain itself, and he was feeling much better at home off pain meds than in the hospital on the drip.

It took about a week for the results of the biopsy to come back. They were sent off to the Mayo Clinic for 3 individual studies. All three came back with the same result of PPFE. The doctor we spoke to that day wasn’t really familiar with the disease and couldn’t give us much information outside of the same and general characteristics of an interstitial lung disease. So, we went home, and I threw myself into researching.

Over the last several years research has improved a little. There are a least more than 2 articles that come up in a Google search now, which is promising. It’s all pretty much the same though. There’s a theory that it could be caused by chemotherapy and radiation treatments. Danny had Ewing’s Sarcoma when he was 8 and had undergone both chemo and radiation to beat it, so that makes sense.

The rest of 2017 was fairly uneventful in regard to his health. He was on a regimen of antacids and anti-histamines to decrease inflammation in his airways. The story picks up next with a referral to an Interstitial Lung Disease Doctor.