I just wanted to post a quick update, although there is not much to report. The Cipro seems to be helping, but I am still coughing, my lungs are still rattling, and my FEV1 is still down. Greg and Grace are still coughing too. Sigh. Hopefully I will have something to report soon!!!
This coughing virus is a beast! My husband and I are both still coughing. Last week it was so bad I almost threw up a few times, and the same thing happened to my husband. I was talking to a friend who said she and her husband had the same virus - she said she was coughing forever and that her husband threw his back out.
So, with that said, I still can't really say for sure how Kalydeco is helping my lungs. I usually blow about 3.3 L on my FEV1 monitor. At one point last week I was struggling to blow 3.0 L, but I started feeling better, and at one point I got it all the way up to 3.9 L! I didn't believe it the first time, but I managed to blow 3.9 L two more times. H-O-L-Y C-O-W. The highest I have ever blown on that thing is 3.6 L, and that was over two years ago, when I was pregnant with Grace and my FEV1 was 120%. BUT, two days ago my numbers went back down and I started feeling worse. I had horrible night sweats and fell like crap yesterday - coughing a ton and feeling short of breath. So, last night I started Cipro. I already feel better this morning. I don't remember Cipro working this fast in the past, so I'm not sure if I would have felt better anyway. But, hopefully I am officially on the mend!
I'm sick! Everyone in the house has some sort-of coughing virus. No other symptoms, just a cough. But, I am the only one with a productive cough...I was hoping Kalydeco would prevent that, but maybe it's too early, or maybe it's because I have some mild bronchiectasis. My mucus does, without a doubt, seem thinner when I cough it up - it feels just like saliva, instead of a blob. So that is exciting.
If it weren't for my husband having a cough too, I would have chalked this up to part of the "clearing out" stage. Last night I was coughing so much I was gagging and I couldn't sleep, so I ended up taking cough syrup, something I never do. Wow, that stuff worked instantly!
My sinuses continue to feel awesome. Hopefully my lungs will too once this cough goes away.
My blog definitely contains a bit "TMI" (Too Much Information) at times. But I really wanted to be very open about my journey, and I am a very open person. (And yes, people do sometimes say “Thanks for Sharing” to me in real life :) If you don’t want to read about "womanly" issues, you probably doesn't want to venture any further into my blog! ;)
I am 39 years old with cystic fibrosis. For the CFers who may be interested, my FEV1 is 115%, my genotype is dF508/R117H, and I am pancreatic sufficient. The primary way CF impacts me is chronic sinusitis and repeated bronchitis and mild pneumonia. My sputum cultures show pseudomonas aeruginosa(PA). I have only been hospitalized twice. I have been on Kalydeco since February 2015.
My husband, Greg, and I have two daughters: Lily, age 5, and Grace age 3.
I started this blog to share our journey towards conceiving our first child, and to share the information we learned along the way in case it may help other women with CF. During our struggle with infertility, this blog was a wonderful way for me to connect with other women who were dealing with similar struggles.
I now write this blog to share my life as a mom with CF! It has been an amazing journey!
2WW = Two Week Wait (the time from ovulation to menses) AF = Aunt Flo BFN = Big Fat Negative (regarding a pregnancy test) BFP = Big Fat Positive (regarding a pregnancy test) CBEFM = Clear Blue Easy Fertility Monitor CF= Cystic Fibrosis CM = Cervical Mucus CP = Cervical Position ENT = Ear Nose Throat Doctor EWCM = Egg White Cervical Mucus IUI = Intrauterine Insemination KU = Knocked Up LP = Luteal Phase O = Ovulate OPKs = Ovulation Prediction Kits OB/GYN = Obstetrician/Gynecologist PCP = Primary Care Physician PG = Pregnant RE = Reproductive Endocrinologist TTC = Trying to Conceive