1. Do you have a primary diagnosis, if so, what is it?
A: I am diagnosed with cystic fibrosis. Within cystic fibrosis there are different mutations. Mine is the double delta 508 mutation.
2. How long did it take you to get diagnosed?
A: It took me a couple months to get diagnosed. My mom was concerned when I was born because all I did was cry. After a while she took me back to the doctors and after a bunch of tests, the results showed I had cystic fibrosis. I was diagnosed around 2 months old.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: Since I was so young when I was diagnosed, I can’t really remember how I felt.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: I would tell them to definitely try to get diagnosed. Without knowing what is wrong, there is no way to get better. Once you know what’s wrong, the doctors can start helping you treat your case and set you on the right path.
5. Has your chronic illness changed your perspective, and if so, how?
A: My illness has definitely opened my eyes to how important life is. Some days I take things for granted. When I’m not feeling my best, it is a reminder to take a step back and look at how good my life is even with my illness. I can still go to work, come home and ninja train, go rock climbing, and do mostly whatever I want to. A lot of people with cystic fibrosis can’t do these things. I feel so privileged to be able to live the life I have now.
6. What moment are you most proud of in your chronic illness journey thus far?
A: This is a hard question because I’m proud of so much in my life. My biggest is getting married to my high school sweetheart and now, getting ready to have our first baby boy. This is huge because when I was born people with cystic fibrosis only had a life expectancy of a couple years. Also, males with CF have about a 1% chance of having children naturally. With the help of IVF and a lot of praying, we will be welcoming our baby boy this August.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey?
A: My lowest day was when I had my worst lung infection ever about a year ago. I never had an infection so bad to the point of needing a PICC line to help out with antibiotics. My lung function dropped significantly and I needed to be hospitalized and on extra medication for several weeks.
8. What or who has helped you the most during the lowest days?
A: Hands down it has to be my wife. She has always been there for me no matter what. I got hospitalized on her birthday and she spent her day and night by my side helping me through the picc line and intensive breathing treatments. Outside of the hospital, she always pushes me through my ninja workouts and trying to better myself both physically and mentally.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: The biggest thing I can tell them is don’t give up or give in. Try to get up and get active. Being active is the main reason I can stay healthy. It doesn’t matter how big or little your workouts are, it only matters that you are trying to better yourself. You will see that when you start trying to better yourself, your health will start improving.
10. What would you like the world to know about life as a chronic illness patient?
A: It definitely isn’t as easy as I make it look. I’m very lucky to have my illness under control for the time being. It takes a lot of time for breathing treatments and a lot of pills. On average, I take 30 plus pills a day and have to do multiple hours of breathing treatments. There are some days I just want to lay down and throw in the towel, but then I realize I have a son on the way and I can’t give up. I wish people could understand how much work it takes just so we can live a normal life that most healthy people take for granted. Even though you may have a chronic illness, don’t let it define you.
By Branden | @cystic_ninja