IV antibiotic update: Last Thursday (the 1st) I had my regular labs drawn. I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2. That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys. We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9! It is better to stop it before it gets to bad. I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range. I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. 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…
WOW! We had a great tournament that raised $1,508!!!! I’m amazed at the turn out once again. We have great friends that offer great support. We appreciate it very much, it means the world to us. Continue reading
I called my nurse today and asked for the obligatory 3rd week of IVs. 14 days never seems to get me over the hump. Although, I would love to be needle free tomorrow, that will have to wait another 7 days. Continue reading
I managed to get myself up and out the door for 2 doctor appointments. I had a very hard day yesterday, emotionally and physically. I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc. Physical symptoms are non productive cough which sucks. I can’t sleep for more than an hour at a time it seems. I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading
I hope I can write this and let it make sense because it is all jumbled in my head…. It feels like a game of ping pong with my thoughts in my head. Hmmmm let me divide it into topics….hahahaha Continue reading