The wait is finally over. Trikafta was delivered today! I will start it tomorrow morning. Now here is to hoping that I tolerate it well. I will update after I’ve been on it for a little bit so that I have something to update about. haha
I contacted my transplant coordinator and had her ask my doctor about me trying Trikafta (the new CF drug) in regards to my liver nodules. Doctor said it is fine to take it we just have to monitor my liver enzymes closely. Continue reading
The new triple drug for CF has been approved! You can read the FDA article here. It is supposed to help about 90% of the CF population. It is for my CF mutations (double delta f508). The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor). I can’t help but to think trifecta when I see the name…haha. Continue reading
I tried the oral antibiotics route and it didn’t help. I’ve been on them for about a week and a half. All they have done is make for a yucky tummy. With that said, I called my nurse for IV antibiotics. I haven’t felt good for too long. It’s always hard to tell if it’s a new normal or if I’m actually sick sick. So I’m looking at this one as I’m sick. I will be doing IV Zosyn every 6 hours for 14 days. I will go tomorrow morning to get my port accessed and to get labs drawn for a baseline. They also want an x-ray. So I will be walking all over the hospital. I’ve also been having bowel movement problems, as in not going. You would think that with both strong antibiotics in my system I would be going non stop. My body like to not do things the suggested way. haha. I am drinking lots of miralax to combat the problem, which is no fun. I hope to update in 2 weeks that I am feeling better.
Until next time…
Just a reminder about my www.COTAforShannonM.com fundraising link for medical/transplant expenses. There is a fundraiser in the works for you Kansas City folks. More to come on that.
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 finished IVs on Friday morning. It was a long 10 days of a 2 hour infusion every 8 hours. That’s 60 hours being hooked up to “the pole” in the 10 days, which doesn’t include all the breathing treatments, pills and time hooked up to oxygen. Yes, taking care of myself is a full time job. It is tiring at times and annoying most of the time. I do try and look at treatment time as a positive thing. It is sustaining my life and I get to update you all on this here blog while doing my treatments along with trolling Facebook. Continue reading
Hello friends and family! Seems like I was just here updating you all. Well I am not feeling good again after only 2.5 weeks off of IVs. I started with the dry unproductive cough again which was what happened before I was hospitalized at the end of March. Along with achy and my chest is sore from all the coughing. Plus I still have the pulled muscle on the left side of my chest which seems worse the last few days. It hurts so bad to cough. I’ve been trying to brace myself when I cough but that doesn’t even help. It’s like something is stabbing me every time. Continue reading