For many people with cystic fibrosis, doctors' appointments, hours of treatment, and hospitalizations are the norm. Growing up, I went to clinic every three months and have always been strict about my treatments, making sure I do each one fully and well. I want to say that led to some of my success in going so long without being hospitalized. Ever since I was a baby, I have never experienced lung problems as much as the digestive issues. Unfortunately, this past December, it was time for a “tune up.”
Since August of last year, I had a horrible cough that kept producing sputum no matter what antibiotics I was taking -- I took so many different ones (and even tried some twice) and nothing was getting rid of it. I went into the hospital on a Wednesday and ended up staying for 10 days.
As soon as I got into the hospital, my physical health declined. My pulmonary function tests were in the 50 percent range when they were typically in the 80s and 90s. My cough was coming and going and my whole body felt weak. My stay in the hospital was a lot longer than expected, doctors were confused about why I wasn't getting better, and my symptoms got worse. Those 10 days took so much out of me, both emotionally and physically, and I didn't even realize it.
Once I was released from the hospital, I went on a different inhaled antibiotic that helped another germ I had. My cough went away, and I was physically feeling a little better for a couple weeks. But I started to struggle mentally after that hospitalization. I started telling myself that I couldn't do things and I was telling myself I was weaker than I was. I felt bad and like I couldn't do enough to help myself.
Eventually, I felt my courage build back up. I started physical therapy because my body had become hypersensitive in the hospital. Doing physical therapy at that moment helped me start to gain my strength back. I started going to the gym with my mom and walking on the treadmill for thirty minutes every other day. My physical strength started to come back slowly, and with it, I started believing in myself more. Today, even though I am not where I used to be, I have come a long way since starting physical therapy.
Regardless of why you're being admitted, hospitalizations aren't a fun thing. My first hospital visit was nothing like I expected. Because I had no idea what to expect, it caused me to feel something I'd never felt before. CF makes me feel alone -- no one understands what having cystic fibrosis is like unless you have it. And, when I was in the hospital and my physical and mental health were getting worse, I felt even more alone.
But I knew I had people by my side. I am forever grateful for the amazing nurses I had, the child life specialist who made sure I was never bored, my awesome CF team that checked in with me every day and made sure I was doing OK, and my family and friends who made me feel loved and not alone.
CF is such a scary thing especially because it affects everyone who has it so differently. We all have our own battles with the disease, some are just different than others. I feel incredibly lucky that I went 17 years without needing IV antibiotics -- and I still feel lucky to this day. Although it's easy to look at the negative things, I always try to stay positive. No matter why you're in the hospital, I encourage every single person to find something that makes you happy.
I know this was my first hospitalization, but if I ever have to go back, at least I will be better prepared and know what to expect. For anyone else who is struggling with going into the hospital, remember: We all fight this battle together and every single person in the CF community is rooting for you.