My CF Summer

This past month and a half has been a blur of chaos and I feel mentally fatigued from all the craziness CF brought into my life. It feels so strange to think just a few weeks ago I was waking every morning and swimming, spending my days in the garden and with my daughter, my house was clean, and I was using produce to make homemade spaghetti and pizza sauce. And today, my life revolves around sleeping, treatments, and IVs and feeling sick. It is amazing how quickly life changes week to week with CF. There are times that life feels exactly as I picture my life should look and despite the pills, treatments, and extra doctor appointments I sometimes forget that my life isn’t “normal.” And then there are times that life feels so uncertain and scary and even the most simple of tasks seem completely unattainable. These past few weeks my health has deteriorated. My low pfts from last month seemed high in comparison to my numbers after two weeks of Levaquin and a week of IV Zosyn, where they sat at a mere 28%. Two weeks ago I spent 12 hours in an emergency room which left me completely exhausted an overwhelmed. Then my contact dermatitis from all port dressings which has been a chronic struggle flared up in a matter of 24 hours to a point that I wasn’t sure I could continue IVs. And then the blows kept coming.  

I miss the days that CF exacerbations were “simple.” Where I would feel sicker than normal, call the doc, start IVs or orals, continue life as normal, complete IVs and feel 100% myself. It is amazing to think that all through my 20s tune ups hardly changed my normal routine. I would’t even take time off work or school when I had IVs and somehow I would bounce back to baseline without much extra effort. I know that I am incredibly lucky to have been so very healthy for so long. I know so many people with CF would think getting through your 20s with such ease seems almost too good to be true. I am grateful every day I had such a long easy run with CF. And yet, I can’t help but feel sadness and frustration at how utterly impossible CF tune ups have been the past few years. How my lungs just don’t respond the way they used to and despite more aggressive therapy, exercise, and medications my lungs just never seem to cooperate. I guess no matter how old you are nobody can ever be prepared for the intense progression of CF.