From diagnosis to treatment: What life with PF is like, part 2
In the second of a series, a columnist describes daily life with a chronic disease
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Last in a series. Read part one.
When the tests to determine if I would be diagnosed with pulmonary fibrosis (PF) finally gave me clarity, I thought the hardest part of my journey was behind me.
In reality, the diagnosis marked the beginning of a new chapter — one filled with monitoring, treatments, and procedures that would become part of my daily life with PF.
Although PF is a progressive disease that can worsen over time, there are no formal stages. Instead, my pulmonology team evaluates my symptoms and test results to understand how far my disease has progressed. Once you are diagnosed with PF, your life becomes measured in scans, numbers, and follow-up appointments.
Every three months, I undergo pulmonary function tests to measure how well my lungs are working and how effectively I can move air in and out. I also complete a six-minute walk test to assess my endurance. Those six minutes are some of the hardest for me. I try to remind myself that it is only six minutes and that anyone can walk for six minutes. But I am not just anyone. I am living with a rare chronic illness that makes even those six minutes a challenge.
My daily routine
Even after five years, these tests have not become easy. In many ways, I still feel like a beginner in this journey.
Every six months, I undergo a high-resolution computed tomography, or HRCT, scan. As someone who is claustrophobic, I must prepare myself to lie still inside the machine and manage my anxiety. Even knowing the scan is brief, those minutes can feel endless. What was once routine has become something I must mentally prepare for each time.
Over time, I have learned to measure every aspect of my breathing. I monitor my oxygen levels with a pulse oximeter and check my blood pressure when my heart begins to race due to atrial fibrillation. This has become my new normal, so much so that I sometimes forget what “normal” used to feel like.
Daily medications are now a strict and necessary routine. These medications are not optional; they are essential to maintaining my health. I take multiple pills each day to help keep my lungs from declining. The side effects can be exhausting, but I remind myself that they are far better than another hospital stay.
Every four months, I receive rituximab infusions to help manage the inflammation affecting my lungs. However, each treatment comes with another challenge: proving to my medical insurance that the therapy is necessary. Navigating insurance approvals has become its own battle, one my doctors help me fight.
Medical appointments are not simple visits. They are full-day commitments that require travel into the city, often more than an hour each way. I manage this by planning ahead, packing meals, and scheduling several appointments on the same day. Living on a fixed income means I must consider every expense, from food to parking.
I also carry the emotional weight of knowing my family adjusts their lives to support me. That sense of being a burden is something I continue to work through.
Despite all of this, I am grateful to my medical team. From the beginning of my diagnosis to today, their dedication has helped stabilize my disease. Every test, treatment, and decision has led to this point of stability, and for that, I remain hopeful.
Finding the right treatment plan was not easy. In fact, it was one of the most difficult parts of this journey. Now, I believe our efforts are meaningful and this fight has a purpose.
Although PF is irreversible, I hold on to hope. Whether that hope is for my own future or for the next generation, I believe progress will come. And while this journey has changed my life in ways I never expected, it has also taught me the strength it takes to keep moving forward, one breath at a time.
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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