Every patient’s journey with IPF is part of a unique mystery
From the day of my diagnosis, my focus has been on understanding my disease
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How was Stonehenge constructed some 5,500 years ago? How were the stones moved, and who moved them? Why were the monolithic statues erected on Easter Island? Do questions like these weigh on you?
I enjoy a good mystery, and my journey with idiopathic pulmonary fibrosis (IPF) has all the hallmarks of one.
My diagnosis in January 2017 was the start of my own personal mystery. I have stood in the shadows of Stonehenge, and Easter Island is on my bucket list, but from the day of my diagnosis, my focus has been on understanding the mystery of my disease. Each of us with IPF has a personal mystery. For something to be idiopathic means its cause is unknown — a mystery.
My bucket list would have to wait.
Still, the cause of my IPF may never be known to me. I had no known exposures to coal dust, asbestos, or birds. I had no known family history, even though my younger brother Mark was also diagnosed with IPF.
No single treatment
Along with IPF having no known cause, each person’s experience with this disease is a unique one, adding to the mystery of it. Consider the treatments for IPF.
I am a moderator for the Pulmonary Fibrosis News Forums, where participants talk about medications, dosages, timing, and side effects. I read most of them, and I’ve observed that each of us is a unique case study. There is no universal medication schedule for patients with IPF, and the three available anti-fibrotic therapies for IPF do not work the same in all patients. Some may need a lower dose, or they may need to take two medications together, rather than a single one.
Because every patient’s experience is unique, it’s not a good idea to change a medication based on another patient’s experience. That may do more harm than good, but participating in forum discussions can help patients craft questions about medications or dosing before their next clinic visit.
Supplemental oxygen is a non-drug treatment for IPF and is another good example of how every person’s unique experience adds to the mystery surrounding this disease.
I’ve encountered patients who left their clinic where they received a diagnosis of IPF with a prescription for oxygen, but I did not require supplemental oxygen until more than two years after my diagnosis. When I was diagnosed, my oxygen saturation levels were at 98%, yet I had IPF. By the fall of 2019, my saturation levels would drop to the mid-80s during exertion, including when I climbed stairs. My friend Pieter, diagnosed in 2009, did not require oxygen for more than eight years.
Not every IPF patient will need supplemental oxygen, while others may be hospitalized because their supplemental oxygen needs cannot be met at home. I was fortunate to receive a bilateral lung transplant in July 2021. When I received the call that lungs were available for me, I was at that time needing 7 liters per minute of oxygen to walk across a room.
I have not given up on unraveling the mysteries of my journey. I want research to continue in the search for a biomarker that will lift the veil on the cause of IPF. I want to unlock the secret to more effective therapies, treatments, and, above all, a cure. While we wait, I intend to continue to make every breath count.
The Pulmonary Fibrosis Foundation needs your help on March 4 for its annual Hill Day campaign. Share your story with elected members of Congress in support of legislation important to the pulmonary fibrosis community, such as the Supplemental Oxygen Reform Act. Registration is now open until Feb. 18.
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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