I am set to leave for Hawaii in 12 days. I have not been feeling the greatest over the last few weeks. My cough has increased and gotten “juicy/nasty” sounding, plus more productive. I have been waking up in the middle of the night coughing as well. I want to be able to enjoy Hawaii and I have 12 days to do something about it.
So I waved the white flag. I called my nurse to see about IVs or something to get me to as “tip top” shape as possible before I go to Hawaii. They called me in for lung functions. My FEV1 was 38%/1.09L which is basically my baseline (meaning my normal). Just because my numbers are stable doesn’t mean that nothing is wrong considering my symptoms.
I’m starting IVs tomorrow morning for a 10 day course to get me something before I leave for Hawaii. I have labs tomorrow along with Monday and Thursday of next week. I’m starting IV Avycaz every 8 hours along with IV Colistin every 12 hours.
Here’s to 10 days of IVs doing the trick! Please pray that they do the trick so I can enjoy my time in Hawaii with my family.
Until next time…
My husband will be retiring from the US Air Force this December after 20 years of active duty service. It is a scary and exciting thing all wrapped up in one. The transition to the civilian world is definitely an adventure with the civilian job hunt and things being up in the air, like will we have to move for a job. In that sense it’s somewhat like military life…haha. Continue reading
I had a CF clinic check up yesterday and all is good. My lung functions are up 3% to 36% from 33%. They said I sounded good and looked good. My BMI is great at 24, yes I have some extra weight to help fight off infection. When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection. Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess. If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading
I just got back from a girls trip to the beach. The beach was great as always. The beach is my happy place. I could sit on the beach for hours on end, it is so relaxing. The salt water air is good for my lungs and it all together does wonders for my mood. If we lived closer to the beach I would be there often. Continue reading
I have not been feeling good for about 3 or so week, maybe more. I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant. We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs. I made the dreaded call after the 4 days of 40mg of prednisone and no improvement. I need something more therefore I had to call with all the I have coming up. I have a busy 5 weeks ahead. Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself. Then I have a girls trip to the Gulf Shores the next week. Then in 5 weeks we have our good friends wedding weekend. Continue reading
Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
May is Cystic Fibrosis Awareness month. This is the month many CF Foundations do their Great Strides fundraising walks. I am very aware of CF every day obviously. Now is the time to educate others. If you have questions about CF or what I have to do every day feel free to comment on this post and I will answer them. Continue reading