Today I had CF clinic. Thanks to Trikafta my weight is up, not that I want it to be. haha My lung functions are holding steady at 37%/1.06 L FEV1. In October they were 36%/1.02 L FEV1. It is unclear if I will gain any lung function on Trikafta, only time will tell. I’m just happy if I hold steady and put off lung transplant as long as possible which gives us more time to fundraise. The hope is that Trikafta will extend the time between exacerbations (lung infection) needing IV antibiotics. Continue reading
Today I had CF clinic. It was an all around good visit. Sometimes I hate saying that I feel “good” because I know it won’t last forever. First up was lung functions. My FEV1 was 35%/.98L which is pretty much the same as last time. My weight was stable at 123 and my pulse ox was 95%. I met with the whole team of folks and was sent on my way. Can’t complain there. The pulled muscle I had FOREVER is finally better. Short and sweet update!
Until next time…
Still fundraising for transplant at www.COTAforShannonM.com. Thank you for everyone that has already donated, it is greatly appreciated.
I got home from the hospital on Tuesday afternoon. It was a long week in lock up. I survived though. I have major steroid brain after having a lot of IV solumedrol steroid (80mg a day) while inpatient. I am now tapering down from 60mg prednisone, a long taper. I’m so fuzzy, scatterbrained, antsy and swollen feeling…so annoying. I’m having a hard time even focusing on this post, I’m trying not to be all over the place…haha. Continue reading
I have been really short of breath and coughing more so I made an appointment with CF clinic. Today was the day. I did lung functions and they were actually up since I was last seen in November. My FEV1 was 37%/1.05L. I decided to do IVs in hopes of that I caught whatever this is before it got bad. I will be on cefapime every 8 hours and amikacin every 24 hours and have labs twice a week. I have a follow up appointment on February 7th.
Until next time…
Hello all! It’s been a little bit since I updated. I have had a hard time with switching antidepressants BUT I’m finally starting to feel like myself again. I still have some work to do but I’m getting there. Like I said in the last post I kind of regretted stopping the Effexor, well I’m back on it. The other meds just weren’t cutting it so I asked to be put back on the Effexor. It’s been 4 weeks and I’m finally feeling decent. I have lost weight from changing antidepressants. My appetite hasn’t been the best but it’s getting better. Continue reading
I had CF clinic today to follow up from when I was on IVs. My lung functions were up a little to 30% / .87L FEV1. We talked about this range being my new normal (baseline) for lung functions. Thanks virus, thanks a lot. I shared with him what was done at Barnes for my transplant appointment, some of which he already knew. I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri. They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. Continue reading
After 3 weeks of antibiotics, I am not all the way better. I still have an annoying cough that wakes me at night. I cough so hard that I see stars and almost see black…not cool. Today’s appointment went as follows: Vitals (all good, O2 was 96 on 2L), My lung function was FEV1 of 38% / 1.08L which is still stable. Stable is good when it comes to lung functions. 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 haven’t been feeling the greatest for over a week. I’ve had an increased cough along with increased sputum (what I cough out in case you don’t know what that is). I have been having trouble sleeping. I also have been more worn out and more short of breath and needing to use my oxygen more often. I called my CF nurse to ask for IVs and I got an appointment with the doctor instead. Continue reading
The first bit of news is that my dad is here to visit for a week…yay!!! He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them. Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha
Today was a good clinic day. First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick. I have been having good days and bad days as per my normal so I was curious how my appointment would go today. Continue reading