We are excited to feature Ron’s story of how his cystic fibrosis diagnosis in his 40s answered some questions he had his whole life. Thank you, Ron, for inspiring us with your message of positivity and for your service to our country and your community!
Folia: How did you find out you had CF?
Ron: I found out I had CF in my 40s. I grew up with asthma most of my life, but things happened that doctors could never put their finger on. After I got out of the military, I began to get sick more often and went to the local VA clinic. As soon as I walked into the exam room, the doctor heard me cough and immediately said, “I think you have CF.” He asked to take a blood sample so he could send it off to the Mayo Clinic. Two or maybe three weeks later, we got the test results back and it was positive.
It put a name to the enemy because that way I knew what I had to fight. Growing up, asthma didn’t really seem like the answer to what I was experiencing because things got worse over time. My mother was a registered nurse and when I was a child they did a sweat gland test, which didn’t reveal anything but it was the only test available at the time.
Folia: What was it like telling friends and family?
Ron: I took a couple days to internalize it and start looking on the internet for information to learn more about the disease. My primary care physician at the time did not know anything about CF so we worked together to increase our knowledge.
When I told my parents, they took it the hardest. They blamed themselves. But as far as they know, no one in the family history ever had CF.
Folia: Describe your care team. How do you stay on top of all your care?
Ron: My CF Care Team and doctors; my PA, Shauna; the registered nurse, Kelly; and people on the CF floor at Seton are all angels. I’m really blessed to have these people around me. Everything is done to empower you so that there’s nothing you can’t accomplish or do. They challenge you and want you to succeed in the best way possible. They’re there for you 100%.
I manage my care at home. I have a good memory for that sort of thing, and being retired helps. I’ve been using Folia for a couple years. I get on it every morning and enter my information into it and it makes things a lot easier for me. I am very happy to have a great tool like Folia to help me manage my treatments.
Folia: What lessons would you share with your younger self?
Ron: I’m of the mindset that everything happens for a reason. You’re set upon a path, and you follow that path. The timing of my diagnosis, that was part of my path. A doctor that didn’t even know me stepped in and recognized that I might have CF after 40 years, that’s pretty amazing. It changed my life forever and I am forever in his debt.
Folia: That’s a great attitude. Plenty of people may feel resentful that it took that long - perhaps rightfully so. Have you always had that attitude?
Ron: It’s definitely been a journey. For me, I rely on my faith in God. I guess it’s how we choose to embrace it.
It’s been a humbling experience for me. I know others have it worse than I do, and they still fight the good fight and keep their heads up. I should do no less. I have been blessed in my life to do the things that I thought might be impossible for me with CF, but with the will and determination I have succeeded. I embrace being positive with so much negative in the world.