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.
Hey all! It’s been a little while since I have updated. I have not been feeling well for a few weeks. I have been coughing more, especially at night. I went for lung functions and to give a sputum sample today. My lung function is down just a tad. My FEV1 was .95L/33%, down from 35%. That’s the amount of air that I can push out in the first second after taking in a big deep breath. Which basically means I’m using 33% of my lung capacity. 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.
Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading
Whoop Whoop!!! I made it to 39! When I was born the life expectancy was 12 years old. I have a little ways to get to the new life expectancy of 47.5 (I think that is what it is now, it keeps changing). I got a great birthday present of getting off IVs yesterday. It was a long 3 weeks of antibiotics. I am feeling pretty much the same which I will take because I am not worse. Of course I would like to be better but now since my lung function is low I don’t get much bump from antibiotics but I maintain. I have a clinic appointment next week. I’ll update after that appointment to let you all know what my lung functions look like and what the doc says.
Until next time…