I have been sick since my birthday, so 2 weeks now. I tried oral antibiotics which didn’t help. I threw in the towel and called my nurse to get IVs started. I had a “sick visit” today since they wanted to see me and get lung functions done. My FEV1 was down a bit to .91L/33% (last time was 36%). I’m having more shortness of breath, fatigue and cough. It’s been a long 2 weeks of being sick and not feeling good. After seeing the doctor I went to the infusion lab and got my port accessed and had labs drawn. Now I’m just waiting for meds to be delivered so I can get started. I’ll be on IV Zosyn every 6 hours for 2 weeks. Hopefully 2 weeks is all I need. I think that’s all.
Until next time…
I’ve had a few people ask how I’m doing on the new medicine so I thought I would update. Today is day 14 on Trikafta, the new CF medicine. On day one I noticed a difference in my cough within about 4-5 hours from when I took my first dose. My cough was more “juicy” and productive. It was the medicine working to try and clear out the old mucus in my lungs. I was coughing more and coughing up more than usual as well. By day 3 my cough had changed back to my usual dry cough and was not very productive (my usual). I’m coughing less but still having coughing fits as per my usual but they are less intense and I recover faster. I also recover from being out of breath faster as well. My sputum (mucus) is lighter in color and thinner (not as thick and sticky). I’m not coughing as much at night, or at least I’m not waking up to my coughing as much. I have not had any bad side effects thus far. Yay! Continue reading
Today was CF clinic day. It was my normal 3 month check up that turned into a hospital/IV follow up. It seems to happen that way most of the time. I have dropped the prednisone weight I gained which I’m happy about because 5 pounds in one week was a bit much…haha. No worries, I am not losing weight per se, I just had gained weight from being on high doses of prednisone. I am just fine in the weight department. Continue reading
I finished 3 weeks of IVs earlier this week. I do feel better than I did BUT I’m still having coughing attacks. I’m attributing it more to asthma though. I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being. I’m going to hold off and see if treatments and such can help. We all know how much I love prednisone, NOT! My lung functions were the same at FEV1 .96L/34%. My first two attempts were 33% and my last one was the 34%. I will follow-up in 6 weeks. Continue reading
Today was a regular CF clinic check up. Unfortunately I haven’t been feeling the best for about a week. I have been coughing more and coughing up more as well as super tired. This all could be playing into my depression and antidepressant med change. 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
Today was my regularly scheduled 3 month CF check up. I am seen every 3 months for check ups unless I am sick and need to be seen sooner. It seems to be a rarity that I can have an actual check up that doesn’t turn into a follow-up from IVs or being sick. Well good news is, today was just a check up!!! Continue reading
I have what I like to call my “bucket list.” It’s a list of things that I want to accomplish before my lungs get worse and don’t allow me to do them anymore. I don’t have a written out list so much but it’s in my head. I guess I should get it out of there. One of the top things I have wanted to do since moving to East Tennessee is hiking. Let’s just say that I don’t mean the repelling off the side of a mountain kind of hiking. That would just be stupid. Haha Continue reading
Looks like I have been MIA for a month…well let me explain. I took a road trip to see my friend who lives outside of Chicago and made a few pit stops along the way to see another friend and my cousin and her family. That was a week of the past month. I had a great time and it was a lot of driving for little ol me all by myself. When I got back from my road trip, early morning football workouts started for my bonus son along with other afternoon practices. Then 3 days of baseball tryouts on top of that. So needless to say I have been a bit busy when you add in all the normal family life stuff, house work, doctor appointments, time with friends and more. I have had a few lazy days here and there and tried to take advantage of them but then I feel guilty for laying around. I feel like I should be doing something more substantial. I am blessed to be able to be home and do all the running around. The month we didn’t have my bonus son while he was with his mom was boring and we couldn’t wait for him to get home. Contrary to what some may think, I am unable to work due to the time it takes to take care of myself and how often I am sick. I am thankful my life has played out the way it has because I have time to take care of me and my family. I know how hard it was working and taking care of myself when I was working and I didn’t have my bonus kids then. I can’t imagine doing that now with all the extras in my life. It is already overwhelming when I have to be in the hospital and miss things or on IVs and am drained. Heck it is hard enough when I am not having a good day in general and have stuff to do.