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
Today I had a check up since I’m not feeling better after 6 days of IV antibiotics. My lung function was down again to .88L/31% FEV1. I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then 10mg for 3 days. I was hoping that the taper would help with the wheezing and chest tightness, so far it’s a no go. We decided that if I am not better over the weekend I am to call my nurse to be admitted. They want to add Colistin to my IV antibiotics but want to start it inpatient because of the history of kidney problems with it. There was that one time that my creatinine shot up to 7.0 with the normal range is up to 1.1. Therefore we have to watch it every time I’m on it or any IV antibiotics for that matter. So I will take the weekend to rest, do lots of treatments and hydrate and hope I feel better. However I kinda feel like I am prolonging the inevitable of an admission. Might need the heavy hitters to knock this one out. I’ll update next week.
Until next time…
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
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
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
We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday. I realized my happy place, the beach, is hard for me to get to with all the walking. I had to take breaks walking the boardwalk and then on the beach. Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf. I went in the water and that wore me out as well. Holding myself steady in the waves was hard and took my breath away. With all that said the beach is still my happy place even though it is hard on me now. I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. Continue reading