I had heard about cystic fibrosis at some point in my adult life, but I never really thought much about it, how it affected people, or what would happen if I was diagnosed with the disease.
But then, I was hit with a lot of information about cystic fibrosis after I was diagnosed with it at the age of 52.
I don't think there are too many out there who have been diagnosed this late in life. I have heard most people are diagnosed as babies or a little older.
In my younger days, I played organized and backyard baseball and football with my friends. I also played badminton for hours and rode my bike a lot before I got a car in high school. Walking was no problem. Heck, I walked home about a mile from junior high every day. And in college, I would walk around Penn State's huge main campus to get to my classes.
I had a cough when I was a little kid and I would get bronchitis a couple times a year starting in my 20s -- it took me longer to recover each time. My lung doctor diagnosed me with bronchiectasis in my 30s, but nothing was ever said about CF.
It was only later that I would have the extreme symptoms that eventually led to that shocking revelation.
I woke up on the morning of Dec. 30, 2019 and couldn't breathe - I was coughing up blood, and I asked a relative to call 911 for me. I took my first ambulance ride that day to the hospital a half hour away from my home. It felt like I had pneumonia, but I was diagnosed with the flu and admitted.
Over the four-day stay, the doctors started nudging me toward considering a lung transplant, but all I wanted to do was to get out of the hospital and get back home. I lived with my elderly mom, who has dementia and was alone while I was away, except for when good neighbors checked on her. During all of this -- and right before the coronavirus pandemic hit -- I had to put my mom into a nursing home because of her worsening dementia.
I had a telehealth appointment with my pulmonologist a few months after the hospital stay and, again, he mentioned the topic of lung transplant. I agreed to look into it. Later that day, I got a call from a contact at the University of Pittsburgh Medical Center (UPMC) to talk about a lung transplant. She said I would need a caregiver who lived nearby before we even scheduled an appointment to discuss a transplant.
I texted my sister, Tina, about the phone call and she immediately said she and her family would move from their home in Indiana to help me out. I was shocked by the offer and, ultimately, grateful that she moved six hours east to be near me.
After Tina, brother-in-law Caleb, niece Sarah, and her boyfriend Hunter moved, Tina and I went to Pittsburgh in August 2020 for a five-day lung transplant analysis, where I went through many tests. As I suspected, though, they said I was too healthy for the transplant list.
The last day of the evaluation, Dr. Pilewski said he suspected I may have CF. As the lead doc for the UPMC CF team, he scheduled me for a sweat test at Children's Hospital in Pittsburgh.
I took the test -- which really didn't involve sweating -- and a few days later I found out the diagnosis was CF. I was, again, shocked. Neither my late dad nor my mom had CF, but they apparently had passed the gene down to me.
A contact from the CF care team scheduled an appointment for me to meet the group. She suggested that I shouldn't do any internet research before the appointment because too much internet medical research can lead to unnerving reading. My jobs as a content writer and as a newspaper sports stringer involve heavy internet research, so staying off the internet was challenging. I did refrain from researching CF though, because I knew my situation could be different than somebody else's.
I'm a positive person, which has helped me during my share of troubled family times, so I decided to wait until I met with the CF team in September in Pittsburgh to take it all in. My head was swirling with information overload by the end of the meeting. I took a genetics blood test at the appointment.
A team member explained that I'd be prescribed Trikafta®, a new drug that could potentially do wonders, if I was eligible.
I eventually qualified for the drug, and I noticed right away the junk in my lungs was loosening. I still have breathing problems, but Trikafta certainly helps me in conjunction with breathing treatments.
I have good and bad breathing days. Taking the stairs leave me breathless sometimes -- I still think about the morning a few years ago, before my diagnosis, when I lost my breath simply walking up a couple flights of steps to my office. Climbing stadium steps to report on high school football games in 2020 led to some scary breathing situations and altered the way I cover the games. I'm fortunate that I'm now allowed to work remotely.
I've always been independent, but I'm thankful that Tina and her family are nearby and can help me out when I need it. I try to stay positive, exercise at the local YMCA because I think staying active helps, wear my mask, and continue my daily CF-fighting regimen of meds, nebulizers, and a Smart Vest.
I also have faith that finding out at 52 I have CF is all in God's plan.
Being that I only found out I had CF late in the summer of 2020, I feel like I'm a work in progress.
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