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Maintaining Normalcy When Suffering from IPF
When I first was diagnosed with idiopathic pulmonary fibrosis, (IPF) I didn’t feel like the world was coming to an end. I was on supplemental oxygen but I was only on 2 liters per minute, (lpm) pulse. My oxygen needs were not severe. Everything changed several weeks after my diagnosis of IPF when I contracted respiratory syncytial virus, (RSV) and also had an exacerbation. My oxygen needs were now substantial as I went to 4 lpm at rest and 6-8 lpm continuous flow.
Upon return home after an 8 day stay at the Cleveland Clinic; my whole outlook on this disease changed. I knew I had to fight for my life and it seemed everything I read on the internet was going to come true. Not long after my discharge I met with the Cleveland Clinic Lung Transplant Center; after my appointment I knew I didn’t want to go down without a fight. I would do everything in my power to lose the required weight and be compliant with both pre and post transplant requirements.
Doctors said I could not go to work for 3 months because of the RSV. I knew I had to keep my situation as normal as possible; I needed to see friends, family, and my co-workers in order to maintain my sanity. My wife helped me immensely. She would pack me up in my truck, and made sure everything was right for me to travel. Driving away, I can remember feeling satisfied and normal because I was driving solo, usually with my dog Lucy. I had a constant flow of well-wishers who would come over and visit. Some people who are fighting a disease choose to be by themselves. Others are not as fortunate to have people in their circle that are willing to deal with your disease.
I tried to take part in as many activities as possible. I was in a golf league, and when I could no longer golf easily, friends would strap two oxygen tanks to the golf cart and away we went. Golfing was not in the cards but I felt normal being outside and grateful for the camaraderie. I went to see my beloved Cleveland Browns; maybe I couldn’t cheer as loud but I made it there. My wife and I took a road trip. I drove all the way to Kansas and back. We went to a wedding for dear friends and also were able to see my daughter in Nashville. I went to friends’ children sporting activities. I loved watching the kids play. There were many other functions, activities, and solo drives; too many to list on this forum.
Please, if you are suffering with this disease and you are able; make as many memories as possible! Be as normal as possible!
What activities do you actively participate in to make things feel normal for you since your IPF/PF diagnosis?
Do you have caregivers involved who help you maintain normalcy?
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