After a majestic birthday trip with my mother through the southern Caribbean during which I pushed myself to my physical limits while embracing every opportunity I could physically muster, I returned to the chilly northeast for medical appointments. Bright and early this Monday morning, I had a Pulmonary Function Test (the one I was unable to complete in December), Six Minute Walk Test, and a consultation with my pulmonologist, who is the Pulmonary and Critical Care Program Director for Cooper University Healthcare.

To the healthy amongst you, walking for 6 minutes might seem like an effortless undertaking unworthy of note, but for #lungwarriors like me, it’s a dubious task. The clinician is constantly monitoring my O2 while putting me through different levels of exertion. She’s also adjusting my oxygen levels on the fly to be sure my needs are met but pushing me to see what my body can withstand.

The Pulmonary Function Test (PFT) frankly sucks and is a frequent topic of discussion in my lung disease support groups as a significant pain point. There are 4 tests, given in a glass “soundproof” looking booth that examine lung capacity, oxygen exchange, airway obstructions, and effects of lung scarring on CO2 retention. My mornings are always a struggle to breathe – typically involving 30-120 minutes of coughing and nose blowing until my airways are clear. If there are allergens or the air is particularly dry or cold, I often cough til I vomit and most definitely pee myself. It means that when I have morning appointments, I frequently have to wake up 2-3 hours before I anticipate leaving because when I’m expectorating the morning YUCK, there isn’t really a pushing though. It has its way with me til it’s done and then I can proceed with my day. Unfortunately, these appointments began at 830a, and the office is 80 minutes from home, so the day started very early. It made completing the test even tougher, but thankfully Colleen was a very skilled nurse who guided me through and cheered me on! She even brought me a cup of coffee afterwards as a consolation prize when she saw how rough it was on me.

After the results of the tests were analyzed, I met first with the Pulmonary Fellow who attended me in the hospital. She delved further into my current experiences, challenges, struggles, and strengths. She explained that my airways are unobstructed but that my lung capacity is “severely limited.” When I asked her what the long-term prognosis is, she said that she wasn’t comfortable talking about that without the Doctor, so she went to retrieve her mentor.

My diagnosis is Interstitial Lung Disease (ILD) and Chronic Hypoxemic Respiratory Failure. ILD is a restrictive lung disease where the restriction comes from scarring. Once a lung is scarred, the scarring is permanent and cannot be reversed. CHRF is a long-term condition where the lungs cannot get enough oxygen into the blood. It can also occur when the lungs cannot remove carbon dioxide from the blood, leading to a buildup of carbon dioxide and potential organ damage.

The challenge at present is that since my diagnosis is so recent (Sept 2024) and all initial imaging was tainted by the pneumonia and inflammation, there hasn’t been enough time to gauge the speed of disease progression. It makes any estimates as to time remaining unreliable. She did say that she believes that with the prescribed Pulmonary Rehab, I should be able to regain some quality of life, though always with my supplemental oxygen. I intend to begin that course of treatment next week.

In the meantime, I am struggling to process. I want to put my head down, disappear into a simple life and continue to see the world, keeping peace of mind by staying uninformed and ignoring the world’s tribulations. But the Shannon Maria that I know has been fighting injustice since a young age. She is stubborn and determined when she feels she’s been wronged or if she sees someone she cares about mistreated. THAT Shannon Maria couldn’t remove herself from the world’s atrocities and democracy’s unraveling just because it’ll keep her sane. But my mind always comes back to my prescription from my Doctor: No Stress. No Anxiety. No Cold. My breath and pulmonary health depend upon it.

In the interim, I intend to live my life fully and purposefully. I once again walk the line of wanting to live completely but realize that I must be cautious and not get sick as I adventure. Something as simple as a cold can have significant impact on lung capacity, shortness of breath, and coughing. Another bout of pneumonia could be catastrophic and land me in the hospital indefinitely, with the only option being a double lung transplant. But if I stay in my home in a small bubble, I am not living the life I need for my soul, and thus not truly alive.

For those willing to support my Bucket List Adventures and Medical/Mobility costs, my friends put together a GoFundMe. Thank you for the future core memories.