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 got home around noon today from the hospital which is record time for a release. It helped that I didn’t have to wait for my IV antibiotics to be delivered to me at the hospital. They delivered them to the house which is nice. Let me recap the stay for ya… Continue reading
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 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 not been feeling good for about 3 or so week, maybe more. I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant. We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs. I made the dreaded call after the 4 days of 40mg of prednisone and no improvement. I need something more therefore I had to call with all the I have coming up. I have a busy 5 weeks ahead. Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself. Then I have a girls trip to the Gulf Shores the next week. Then in 5 weeks we have our good friends wedding weekend. Continue reading
I had CF clinic today for a regular check up. Nothing seems to be regular about me anymore when it comes to CF and my depression….but anyway. My weight is just fine and on the high-end of fine. I’m not a fan but that doctors like it. Dang medicines making me gain weight. I might end up being one of those “fat” CFers. Well I already feel that way but on to the next subject. Continue reading
Saturday will be 14 days of IVs so I called my nurse to let her know how I am feeling. I am still having the pain in my lower right side (just at the bottom of my ribs) that has been there for a few weeks. I’m convinced that my right lung has it out for me. It seems to be where most of my infection is, I fracture ribs from coughing on that side and I also get random pains on that side. Maybe it’s my special party trick. Continue reading
I had a chest CT yesterday. It showed a few new spots/infiltrates which are infection but generally speaking it is stable-ish from my last chest CT, no major changes just subtle changes.
I haven’t been feeling good for a week or more. Mornings are the worst, as usual, but once I get moving and do my morning breathing treatment it is more tolerable in general. I have been having my usual symptoms of an exacerbation; increased cough, increased sputum, increased fatigue, increased pain on my right side of my chest, increased over all blah feeling.
All of that means that I am the winner of IVs for the next 21 days/3 weeks!! I will be on Colistin (IV push) every 12 hours and Zosyn (IV ball) every 6 hours. IVs take a lot out of me so I will be worse before I’m better. Hopefully this means I will be good to go for our busy house full over Christmas. They are drawing fungal labs to verify if there is anything fungal could be the culprit. I will be seeing my CF team again on December 15th. I will be having a repeat chest x-ray a few days before that to see if there are any changes. I’m starting the IVs tonight but will only get 1 dose of each medicine in tonight. 21 days of IVs should be December 8/9.
Until next time…