It’s time to take this show on the road and enjoy life
In post-transplant life, it's important to stop and smell the roses
The calendar of any rare disease patient is a marvel, with its complexity and efficiency. I’ve become both a master and a failure in constructing mine. I continue to miss the mark on making time to live life to the fullest.
My schedule gained new elements when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I suspect my patient journey might be similar to that of other IPF patients and those with other chronic, progressive diseases.
The battery of tests used to monitor disease progression indicates the urgency of the situation. When I was diagnosed in January 2017, the appointments and labs were evenly spaced for the first two years. Once the testing to qualify me for a lung transplant began, the pace was a little more hectic, with an increased sense of urgency.
When my IPF progression began to accelerate, the clinic visits and lab work became more frequent. I had to repeat some tests to ensure my progression hadn’t invalidated the results.
When I received a bilateral lung transplant on July 10, 2021, I knew I was trading one chronic condition for another. I was able to breathe, which was a blessing. The first year following the transplant, my care team wanted me to stay close. Nevertheless, my wife, Susan, and I thought of travels after that year and did end up traveling by car during the second year.
But the number and frequency of appointments increased following two exacerbations during the second year. Since my transplant, I’ve had 15 bronchoscopies in the past 22 months. Sometimes it seems that I’m busier than when I was preparing for my transplant.
Susan, who is also my caregiver, shared a brutally honest observation. While she and I agree that medical appointments and procedures are the priority, she noted that the free time I had left remained so little that it prevented us from getting out and enjoying life.
Last week, I had medical appointments on three consecutive days, including a bronchoscopy to check on the stent placed in my left bronchial stem in May. After the appointments, the week was gone. There was no time left for us to get out and enjoy a short road trip or an adventure somewhere we’d never been before.
Changing my behavior
I needed to change how I approached scheduling appointments to ensure there’d be time to live life and enjoy the benefits of my transplant. It wasn’t as difficult as I’d anticipated, and my care team was supportive.
Susan and I have to plan our trips, so I’ve learned that if my care team wants to schedule an appointment or procedure, it’s fine for me to ask questions to find an agreeable time. Among the questions are whether the scheduling is urgent or key to another procedure. That way, I can determine if it’s OK to postpone or schedule further in the future. We recently tried this approach with my care team, and it was successful.
My goal in writing this column is to share my journey with you. It’s also great therapy for me to commit my experiences to words. One of the great benefits of writing for Pulmonary Fibrosis News is that I can write from anywhere and only need an internet connection to file my column.
With this new approach, I think I’ll be taking this column on the road. Susan and I are going to explore more.
Making more time to live the life I believe my donor intended is how 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.
About the Author
Comments
Taleena Koch
Thank you Sam for this IMPORTANT reminder. We all need to do this. As someone who lives with chronic medical conditions, I have been doing the same - scheduling my life around medical appointments. It's time to STOP! It's time to plan my LIFE and then schedule around that. I am excited to see where your travels take you. Bless that donor and donor family and bless you and Susan as you enjoy this beautiful gift of LIFE. <3
Samuel Kirton
Taleena,
Thanks for reading my column and for your note. Your lived experiences with your Mom along with your health provide you with a keen insight into the struggle with the calendar. Let me know how you do with this.
Sam ...
Margaret Guzman
Thank you for sharing.
I am also having a problem with spending most of my time ar Drs appointments.
Trudging along this scary journey is not easy.
Samuel Kirton
Margaret,
Thanks for reading my column and your comment. It is not an easy journey. Try talking to your team about scheduling to ensure there is time for you.
Sam ...
eve a alvarez
Sam - I enjoy reading your posts and would like to wish you and your wife happy and safe travels on your journeys.
With regard to your bi-lateral lung transplant, do you feel it has made a substantial difference on your breathing and current physical activities.
I was diagnosed with IPF in 2009 and until recently I've had to rely on oxygen 24/7. I'm 73 and have decided that a lung transplant is not for me. Just wondering what it is like considering all the medical tests you must do prior and after plus all the meds/ recuperation afterwards. Is it something to reconsider??
Please email me because sometimes I don't see the responses to these comments. [email protected]
Samuel Kirton
Eve,
Thanks for reading my column and your comments. My lung transplant has made a significant difference in my life. I do not think I would have seen Christmas in 2021 had I not received a bilateral lung transplant in July 2021. Transplant is an individual choice. There was significant testing required in advance and none of those tests were worse than not being able to breathe. Post-transplant I do take a number of meds daily and will for the rest of my life. Those meds have let me see my grandchildren grow up and provided me with bonus years I would likely not have had. I am not sure where you are located so I cannot make recommendations on where you might seek some of those answers.
Sam ...