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 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
Today’s clinic visit was a follow up from my last admission. Ya know, the one where I kept coughing up blood, yeah that one. The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there. hahaha Continue reading
I moved up my CF clinic appointment from Thursday to today because I am still not feeling well. My lung functions are way down which is no surprise to me because I can feel it. Here is what the numbers look like…warning they aren’t pretty… Continue reading
I figured I would update before the craziness of the holidays commence. The lung pain from the pulled muscle that started last Monday has finally subsided. That was a brutal week of pain. I usually push through but when it comes to not being able to breath a decent breath and cough without horrendous pain and tears then please give me drugs (legal that is)! I’ve learned when to be superwoman and when to let that down. Continue reading
57 doses of Aztreonam, 19 doses of Amikacin, 133 Saline syringes (not including the extras for blood draws and reaccessing), 57 Heparin syringes, 2 Huber needles, 3 dressing changes…that’s what I have accomplished over the last 19 days plus tomorrow morning. Tomorrow morning is my last doses of IVs and tomorrow afternoon is my last day of labs. I will be needle free as of 1:15pm tomorrow afternoon!! I’m very ready to be free from the needle and dressings that’s for sure.
Now for the million dollar question, “Do I feel better?” A lot of people think that after I do IVs I’m “better” as in not sick anymore and that is not the case. Yes, I am better for the time being and the goal is to stretch the time between IVs as long as possible. IVs are inevitable in my life so I have to do what I have to do to keep on keeping on. Continue reading
…IVs for 2 weeks then reevaluate how I’m feeling to determine if I need to continue to the usual 3 week (21 day) course. I will be doing the same antibiotic cocktail that I did last time in May/June which was Aztreonam (2g every 8 hours) and Amikacin (25 mg/kg (1250 mg total) every 24 hours). I have managed 3 months without IVs which is possibly the longest in awhile. I will be doing labs every Monday, Wednesday and Friday to monitor my creatinine (kidney function) and all the other normal stuff. Continue reading