A couple of weeks ago I came down with that cold I posted about. After a couple days of those antibiotics I thought I had this mo fo under control and on its' way out. Things changed after 1 week of being on those meds though. Apparently my body was like "oh you know didn't!" and decided to react in a not awesome way to them. I started to feel like I had the flu. My whole body ached, I had the chills, my joints killed and my nose started to get full. Also my cough started back up. I did a little research and saw that these symptoms were side effects of both meds so my doc and I decided to hold them to see if things improved. Twelve hours after stopping them I started to feel so much better, and by the second day I felt great...except for this cough.
Fast forward to Friday night and Saturday...this cough has gotten much much much worse. It's a cough that my family and close friends have not heard in years, since before starting Kalydeco/Blue Lightning really. Not only is the cough bad, but my sides and chest hurt, you can hear crackles when I breath and I've been sleeping twelve hours a night. So unlike me.
So, how? "How can you still get a lung infection now that you're taking Blue Lightning?" my best friend asked this week. It's a very valid question that I'm sure a lot of others wonder too. Kalydeco is not a cure. Sure it treats the underlying cause of CF and helps my CFTR protein function better to alleviate my symptoms, but it does not cure CF. My friends and family have seen the very best ever of me over the past two years thanks to Kalydeco. (and exercising and eating well :) ) No coughing for the first year and a half straight, PFT's that I had never seen before and listening to my speeches saying how "I have never in my life felt better than I do now."
But I still have CF. I still culture pseudomonas, and those buggers can still work really hard together to turn into an infection. This infection is really testing me though, and seems like it hit harder than the infections I've had in the past when I wasn't on Blue Lightning.
Last night I was talking on the phone with my best Ute friend Somer who said, "Oh mannn can't you just wait until after Christmas?" I then started to cough and she quickly replied, "Nope! You're going in tomorrow..." It's now Christmas Eve and I am heading into the U to get things started. My doctor was on call last night and has everything lined up for when I get in there. Hopefully we can get the desensitization going today and get things working.
Spending Christmas in the hospital is not new for me or all of my CF friends. It's what we do to get better. We used to strategically plan the stays so they would fall over Christmas break. I expected them. This ordeal is more unexpected and well, annoying. I have been looking forward to seeing my nieces on Christmas Eve and morning, especially seeing Kacey have a stroke when she gets that damn Dodge Charger Police Car we got for her. Hopefully someone will capture this magic on video for me!
I did score an incredible Christmas sweater from a friend this week that I plan to wear tomorrow at the hospital. It definitely has three dogs on it and two are wearing gold chains....so that's enough to make you go cray!
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