Celebrating Milestones on the Road I Have Traveled
A columnist looks forward to each new day and the many opportunities ahead
There are certain moments in our lives when a single event becomes indelibly etched into our memory. And the significance of such moments is dictated by each of us.
Think about that for a minute. What moments are etched into your memory? Have you dealt with the loss of a parent or another family member? Have you celebrated the birth of a grandchild? What about two grandchildren? Have you walked your daughter down the aisle to marry someone who adores her as much as you do?
In the past six years, I have collected all of these memories. My mother, Betty, my stepfather, Harold, and my stepsister, Judy, all passed away. My grandchildren, Abigail and Charlotte, were born. My daughter, Heather, married Adam.
One other single event is etched into my memory on Jan. 31: On this day six years ago, at approximately 11:30 a.m., I was diagnosed with idiopathic pulmonary fibrosis (IPF).
The day of my diagnosis did not produce the outcome I had hoped for, but it was a confirmation of what my primary pulmonologist had suspected. My wife, Susan, was sitting at my side in the exam room at Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia. Dr. Steven Nathan was seated facing us, while a graduate-level pulmonary fellow looked over Nathan’s shoulder.
That day presented me with a decision that only I could make. While Susan has stood with me at every step of this journey, I alone had to make the decision. It was the proverbial fork in the road: One road led to surrender, the other a more promising path.
The road to surrender required that I avoid listening to my care team, attending pulmonary rehabilitation, or seeking out others who also were on this journey. The road to promise, on the other hand, was exactly the opposite: I would become a part of my care team, attend pulmonary rehabilitation, and seek out others on this journey.
Following my own path
The variables that each of us encounter on our journeys with this disease are many. In a previous column, I wrote about the varied paths that exist. My path has worked for me. It has led me to other milestone dates that are also forever etched into my memory: The day I received the call that a donor lung was available (July 9, 2021); the day I received a bilateral lung transplant (July 10, 2021); the day of my first significant post-transplant exacerbation, pneumonia (Sept. 26, 2022); and the day of my first balloon dilation to stretch a narrowed bronchial stem (Dec. 27, 2022).
These are all dates that have helped me develop a deeper understanding of this disease, both before and after transplant.
Not everyone is afforded the same choices while on their journeys. I will continue to work on living my best life. There are still milestones I want to achieve, and I’m certain there will be more moments that I haven’t yet imagined.
A milestone that’s high on my list is to hear from my donor family. I have written them several times in the 18 months since my transplant. I continue to say a prayer for my donor and their family every day.
In last week’s column, I told you that my first balloon dilation helped me breathe easier, but my pulmonary function test numbers decreased yet again. As a result, another bronchoscopy is scheduled for today, Jan. 31. I’ll arrive shortly before 11 a.m., and the procedure is set to begin at noon. I will be undergoing prep at the exact time I was diagnosed six years ago.
Every day is a new adventure. I continue looking forward to every day of this journey and each milestone moment I am presented with. It was good for me to write all of this down. While I recall each of them, they are now captured here for the newly diagnosed patient to discover. Each of these milestones has helped me to 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.
Thanks for sharing your story. Blessings
Thanks for reading my column. Please come back and I also encourage you to take advantage of the Forums available on the Pulmonary Fibrosis News website.
The continuing education that your articles bring is more than helpful on my IPF journey! Thank you for sharing!
Thank you for reading my column and for your comments. Sharing what I have learned on my journey is good therapy for me. :) There is no need for any of us on this journey to walk alone.
I was having a difficult time breathing back in November and my PCP said it was the result of the anxiety I was dealing with during that time. No reason to get into it but my stress level was over the moon! He set me up for a pulmonary test which came back OK. But then two weeks later I had to go to ER and was diagnosed with Viral Pneumonia. The Cat Scan also showed some fibrosis in my lower right lung! Ow I m freaking out because My younger brother just went through IPF and had to get a complete transplant! That was two years ago! Is this disease really that untreatable that the only way to survive is through transplant? Im 64 work out regularly and never believed I would have to go through something like this! My kids are beside themselves and me. What are the best treatments for this terrible issue? Thanks, Richard
Thanks for reading my column and for your note. Each individual facing IPF is on their own unique journey. While I was diagnosed in 2017 and transplanted in 2021, I have met others who have remained relatively stable for many years. There are two effective therapies that are designed to slow the progression of fibrosis, however, there are no cures that exist today. I am not sure where you are located but I suggest you Google the term "PFF Care Center Network" to identify the closest center to your location. Please come back and let me know how you are doing.
Everyone has a different story, depending on their circumstances. I'd be interested in knowing how many of you out there are living alone. Knowing that I am the one solely responsible for my care sometimes becomes depressing. Having taken care of a husband who had a leg amputated left me in charge of just about everything. Shortly after he died six and a half years ago, I received my diagnosis if IPF. There are days I feel resentful and sad. Anyone else out there who can relate?
Thanks for reading the column and for sharing a bit of your story. Are you familiar with the Forums section of Pulmonary Fibrosis News? At the top of the Pulmonary Fibrosis News page, there is a link to the Forums. The Forums community may be a good place to ask your question. The community is a good mix of patients, caregivers, and family members.