Pursuing another treatment option to expand my narrowing airway
After three balloon dilations, a columnist tries a different strategy
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) on Jan. 31, 2017, I quickly understood three things about this disease. First, it’s chronic. Second, it’s progressive, though it progresses at different rates in everyone. Finally, there is no cure.
One therapy available for IPF is Esbriet (pirfenidone), an anti-fibrotic medicine intended to slow disease progression. I began taking Esbriet shortly after I was diagnosed.
When my care team initially talked to me about a lung transplant, they were clear that it wouldn’t be a cure. Because my disease was idiopathic, meaning the cause was unknown, there was no guarantee that the pulmonary fibrosis wouldn’t return. Still, the likelihood that it would recur post-transplant was very small. I hadn’t been diagnosed until I was 59 years old.
When I received a bilateral lung transplant in July 2021, I knew I was trading the issues associated with IPF for issues related to lung transplants. For the rest of my life, I’d require many post-transplant medications, frequent medical appointments, anti-rejection surveillance — primarily via bloodwork — and inspections of my lungs via bronchoscopy.
Post-transplant life
The decision to pursue transplant is very personal, but it was the right choice for me, and I am so thankful for my donor and donor family. My wife, Susan, and I didn’t expect that I would live through Christmas 2021. I am so happy to have gotten a second chance at life, thanks to the gift of my donor’s lungs.
I have been very fortunate in the 20 months since my transplant. I had no significant exacerbations until I ended up with pneumonia in late September 2022. Then, during a bronchoscopy on Dec. 1, my care team discovered that my left bronchial stem had narrowed. I agreed to have balloon dilations performed to stretch my bronchus, opening it more. They were conducted via flexible bronchoscopy on Dec. 27, Jan. 31, and Feb. 28.
My bronchial stem was 7 mm wide prior to my first dilation. During the second and third procedures, doctors found that my bronchial stem had narrowed. At my February appointment, they stretched the stem to 13 mm.
After having four bronchoscopies in three months, my care team wanted to give my body two months to rest.
The plan
Following my two-month respite, my team will conduct a rigid bronchoscopy, rather than a flexible one, which will be a new experience for me.
A rigid bronchoscope is a straight tube used to view the larger airways. It’s commonly used to remove foreign objects, but in my case, it will be used to place a stent to train my airway to remain open. At this point, the plan calls for the stent to be temporary.
Stents come in a variety of sizes and compositions. While my care team hasn’t decided on the particulars of my stent, they have shared that it may increase mucus secretions in my airway. This will likely cause a productive cough, meaning one that produces mucus or phlegm. Additionally, I’ll likely have to use an albuterol inhaler while the stent is in place to help open my airway.
More to follow
I continue to feel good despite the narrowing of my bronchial stem. I have returned to exercising at least five days a week with no complications. My two-month rest period ends on May 9, when I will undergo the rigid bronchoscopy.
I will continue to share my journey, the good and the bad, with you here at Pulmonary Fibrosis News to help you on your own journey. It’s how I can make every breath count.
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.
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