The CF community is no stranger to the fact that medications that we put into our bodies, especially the powerful ones, do not come without risks. However, they are necessary evils to battle cystic fibrosis. Lately, my battle with cystic fibrosis has been riddled with these powerful, yet damaging, medications.
There’s a memory that sticks with me:
I am lying in my hospital room, hooked up to my IV, thinking about how it’s already afternoon and I haven’t gone down to the cafeteria to get coffee yet. See, I’m the type of person who just sort of rolls with the punches. So, yeah, I was dealing with a lot of fatigue, caused by both my lung infection and the IV antibiotics that were to save me from the infection, but that’s just part of it. Then, my joints started aching and this throbbing headache set in. Coffee. I need coffee. That’s all I could think. I am a caffeine addict, after all. There’s no other way to put it. It was already afternoon and I hadn’t gone down to the cafeteria to get coffee yet. Withdrawal, not fatigue.
I dragged myself out of my hospital bed and fought my way down to the cafeteria. Coffee in hand and mostly consumed, the elevator delivered me back to the fourth floor. I got back to my hospital room, crawled in bed, downed the rest of the coffee, and waited for the caffeine withdrawal symptoms to subside. They did not. In fact, they just got worse. By the time my parents showed up with dinner, I couldn’t move because my body hurt so badly. My dad confirmed that I had a fever. I just laid there feeling guilty that I couldn’t visit with my parents, and that I was just this fragile shell of a human. Not caffeine withdrawal … medication side-effects.
One more story for effect:
A few months ago, I woke up … at 7 a.m. Wide awake. I am not a morning person. OK, weird. The next day, I woke up … at 7 a.m. The next, today, I woke up … at 7 a.m. The over-ambitious side of me has been stoked! I have had so much more time to my day.
A few months ago, my brain fog started getting pretty extreme. It has made me pretty irritable. I get frustrated and overwhelmed very easily because I can’t think. I am normally a very easygoing and put-together individual, especially in times of chaos. Hmm … weird.
A few months ago, I started really struggling with some GI complications. I was feeling bloated all the time, especially after eating. It would become so bad that it was painful and nauseating. I was often constipated and struggling to eat, yet I weighed 6 pounds more at my most recent clinic appointment. Weird.
The next day, I came across an article about five common medications that can be bad for your health. Because I’m somewhat of a medical nerd, I wanted to know if I knew the medications listed. The second medication on the list: prednisone. The article listed its long-term side effects. I began piecing together the puzzle. Insomnia, mood problems, headaches, bloating, increased infections. It all started getting worse around the same time. I had attributed the issues to other things, such as my history of insomnia, fatigue, and various CF symptoms. I realized after seeing prednisone’s side effects laid out in front of me: The steroid was likely causing so many of my health problems.
The last memory I will share is about these medications saving my life:
I am sitting in my hospital room, hooked up to my IV and oxygen. I was up all night, coughing. My pulmonary lung function numbers went down yet again. They were dipping into unseen territory. Frustrated is a mild way to put it. I had a mix of a terrible lung infection and an ABPA flare. The IV antibiotics stopped my lungs from bleeding and the burst of prednisone kept my ABPA at bay. After more than a month of treatment, I felt better than I had in a while.
The first night that I slept through the night was relaxing, energizing, relieving, and motivating all at the same time. I understood the 10 circles my dog runs in after I unclip his leash from his collar because I was no longer tethered to my oxygen tubing throughout the night and sometimes during the day. The best feeling of all was waking up knowing that I could take on the day.
These medications won’t go anywhere. I still take prednisone every single day, IV antibiotics when I need them, and other “evil” medications. But they are necessary evils to my battle against cystic fibrosis. What would you risk to live your life?
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This was originally posted on my column, Path Unknown, on Cystic Fibrosis News Today. My column pieces are posted every Monday. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.
