After my IPF diagnosis, I adopted a mantra: ‘Be positive in all things’
That attitude helped this columnist on some of his most difficult days
I regularly pick up and read my journal from the early days after my diagnosis of idiopathic pulmonary fibrosis (IPF). I’ve shared some of those thoughts in earlier columns. The entries aren’t that different from other people’s journals, and some are intimate thoughts intended only for me.
The journal also describes new experiences on my journey. My first double heart catheterization during my pre-transplant evaluation was fascinating to me, and I wrote about watching the catheter move through the same path as my blood to my heart. It was exciting.
When I most recently picked up my journal, I turned to Feb. 1, 2017, the day after I was diagnosed. I’d had about 24 hours of absorbing that shock, and I was figuring out what I needed to do. My wife, Susan, who’d been by my side when we received the news, would burst into tears whenever I walked into the room. The wound from the diagnosis was still tender.
Let it be known
I ended that day’s entry by writing, “At the end of the day, I want to be better for my choices. Today, I am.” Then I added a to-do list to “talk to the kids, talk to my brothers. Who else?” Finally, in all capital letters, I wrote, “BE POSITIVE IN ALL THINGS!”
The ending was a proclamation. Those five words in block letters helped me so much, especially in those early days. That positive attitude carried me on some of the most difficult days of my journey. It helped me talk to not only my kids and brothers, but also my friends and colleagues.
Back then, I had a persistent cough, which is often associated with IPF. Other visible IPF symptoms would develop over the next six to eight months.
Did I have bad days? Of course. What I didn’t do was dwell on them or let them consume me. My care team was doing everything possible to manage the complications of my disease. They needed me to be engaged as my own best advocate.
My attitude also helped me during some of the more uncomfortable procedures. Athletes often score their performance by noting if a particular event was a personal best. The day they drew 29 tubes of blood in a single lab session was one of my personal bests. Attitude carried me through that session.
Seek out others
If you find yourself in a situation similar to mine after diagnosis, I recommend that you take time to identify the resources available to you. Some may be obvious, such as support groups, but you might have to seek them out.
At Inova Fairfax Hospital in Virginia, where I was treated, flyers for support groups and educational meetings are posted throughout the Advanced Lung Disease and Transplant Clinic.
The Pulmonary Fibrosis Foundation (PFF) has a tool on its website to locate support groups near you, as well as information about monthly virtual support groups that the foundation hosts.
Susan is someone I can talk to about how I’m doing on this journey. She’s been there from the start and doesn’t hesitate to tell me when I’m grumpy or need to adjust my attitude. I’m also fortunate to have friends I can talk to who generously give their time and often just listen.
Being perky all the time can be exhausting, even without having to deal with medical issues. It’s important for me to recognize when I need to focus on the mantra “Be positive in all things.” Whether you’re recently diagnosed or, like me, a bilateral lung transplant recipient, there are going to be challenges.
How are you doing?
A fellow PFF Ambassador is recovering following a recent bilateral lung transplant. She’s one of those people who’s always quick with a smile. Her positive attitude is helping her through this part of the journey, along with her family and friends. You’ve got this, Sandy!
I want to know how you, my readers, are doing. What tips can you share to help others make a bad day better? Asking you to help me and others is just another way 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.
Diagnosed 2018, now on ofev. Transplants are not an option in South Africa
Thanks for reading my column and for your comments. I was not aware transplants were not an option in South Africa. I think what makes it more surprising to me is the work of Dr. Christiaan Barnard who performed the first human heart transplant in Cape Town. I hope Ofev has a positive impact on you keeping your fibrosis stable. Please come back and let me know how you are doing.
My Marta….Inhale Courage and Exhale Fear 😧
Thanks for reading the column and your comment. The process of developing a mantra indicates a commitment to living your mantra.
You put it so eloquently, it isn't easy. My best to you.
Thanks for your comment and for reading my column.
Hi Alan & Sam
I was diagnosed with IPF 9 days ago. I'm 71. I live in KZN, South Africa. I've got a lot to learn.
Thanks for reading my column. 9 days ago or 6+ years ago we are all learning. You have come to the right place. Use the search feature on the first page of Pulmonary Fibrosis News to search for terms you want to know more about. I also suggest you look at the Forums link at the top of the page. It is a community gathering place where you can ask questions.