Sorry, I know I haven't updated in a while. Things are so crazy right now between health, school, insurance problems, family things going on... Whew. I'll just summarize if I can and if that's okay.
So I hadn't been feeling good at all, and finally called the doctor on Monday the 23rd. I explained my symptoms and everything, and so I was prescribed Prednisone because it sounded very much like it was all asthma-related. So, I was to start it that day and if I am not feeling better by Thursday night, I have to go see the doctor because there could be an underlying infection somewhere.
I woke up Tuesday morning with really bad stomach pains, and felt dizzy. I overall could already feel a difference though. I wasn't so out of breath, and I actually went more than 3 hours without an inhaler or a treatment. I did feel better than I have breathing-wise.
Today I woke up with a little bit of stomach pain. Also, I'm coughing more than usual. I'm not coughing up more mucus, just coughing more. It almost feels like a dry cough until I make myself cough hard, and I can feel like there is something breaking up in there. I am also having to blow my nose more too. Whether this means that I am on the recovering side of whatever I had and Kalydeco is doing more, or if there is something else going on, it's hard to tell. It's hard to know for sure what the medicine is doing now, because there is so much difference in how I breathe, cough, feel, everything since I started. I know there is a difference, but I don't know how I am supposed to feel. Does that make sense?
So, I will see how today goes. Hopefully this coughing thing I have going on will go away. We'll see.
Hate to hear that you have been under the weather. Hope you feel better soon. :)
ReplyDeleteThank you, very much! :)
DeleteHi there Lezly! I found your blog after you added mine. That "dry" cough followed by feeling something break up is something I'm all too familiar with. For me it means that I'm working up a very, very dry plug from deep in my lungs. (Seriously, this is gross, but some of the stuff I cough up is so dry it's like the boogers from the outside parts of your nose!) I've been on Kalydeco 3 weeks now and this is something I've been noticing a lot of in this 3rd week. I noticed you don't have g551d so I can't say for sure if that is it, but for what it's worth, that has definitely been an effect of Kalydeco for me.
ReplyDeleteAlso, I'm working right now on putting together a blogroll for CF blogs (http://cfblogroll.blogspot.com). Would you like me to add your blog to the list?
(Oh, and I LOVE the "invisible illness" picture you shared earlier. I'm so totally going to steal that one!)
Cindy, I am so glad that someone else went through it. I also ran out of Hypertonic Saline, so I think that is playing a big part in not feeling well too. That nasty stuff is also what I have coughed out as well!!! Tomorrow will be my 21st day on it. I wished things would get in order so that I would know just how Kalydeco is effecting me. I have been so busy with other things, it's hard to know exactly what it's doing. I have noticed that I am not gasping for air after coughs, and coughing so hard, though, and that is definitely one thing I know for sure that it's helped.
DeleteI would be honored to be added! Thank you!!
And steal it!! I love it too. Lol! It is pretty accurate! Thanks again!!
Yeah, one of the first things I noticed was that I wasn't having super violent coughing fits anymore. I used to always have violent coughing fits that would make me see purple and feel like I was going to black out... I haven't had one since I started! I really hope that it is helping you!
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