Hey y'all! So one thing about me is that I eat, a lot, like a lot a lot. You would not be able to tell by looking at me but I could probably out eat any one of you. I am constantly starving and can eat like two grown men. I just cannot seem to gain weight. So the doctor's put me on Periactin which is an appetite stimulant. I am going to go broke just buying food to sustain me. I'll probably eat myself out of a house and home. Did you know periactin is also an antihistamine? Weird right? It makes me a tad tired. I'm also trying to drink at least one scandishake a day to up my weight.
I'm not sure how many of y'all have sinus issues but I have them and they bother the heck out of me. My ENT says to try doing my TOBI and Colistin with a mask to get the antibiotics in my sinuses as well. So maybe that might bee something for y'all to try as well, but of course I'm no doctor. Some of my sinus cavities are getting gross again so I'm also taking a nasal steroid. This will be my first month trying Colistin. Has anyone else used it before? How did y'all like it? I've tried Cayston before but it made me cough up tons of blood so I had to stop using it.
Let me tell y'all one thing about doctor's that just annoys me. You fill out all this paperwork right? You have to write down every single medication you take, then you go back and they ask you the same thing. I'm just always like ugh really and repeat them all over again.
I got to spend the weekend with my boyfriend who I'm ever so thankful for. But....everything went downhill yesterday. I took my car to Wal-Mart (which was my first mistake) to get an old change. It took them 3 and a half hours! There were barely any other costumers there, just one other. I should have expected that I guess. Wal-Mart is the home of 30 something registers and they only open 2 at a time. The oil change cost me $74 which hurt my pockets. I was also told I needed a new battery which is another $105. My poor college kid pockets are getting emptier and emptier. After all that, I go out to my car and it doesn't start. The guy says "well the car won't start because the battery is bad" no really? despite his comment, he brings the jumper cables and a battery out to jump my car off. He hooks the cables to my car, but had the other two cables hooked to the metal cart which promptly started to spark and almost electrocuted him. So I am done with Walmart. I shall find a new place to do my auto care.
Sorry this is kind of a rambling post. I guess y'all are used to that by now though.
Hi there! I actually just finished my first round of Colistin. I feel pretty awesome, but I also started both the inhaled AND IV form of the drug at the same time, so its difficult to say exactly what worked the best, but so far I'm going to say the inhaled version is pretty awesome. It takes a lot less time to do as a neb than TOBI (woohoo!), but it also takes more effort to prepare. I was a little overwhelmed when I first opened the box CF pharmacy sent me with all the components to the drug, plus when i was in the hospital they really freaked me out by telling me this was a "dangerous" drug, so I called the on-call pharmacist and begged for help, haha. He very nicely walked me through the process of mixing the antibiotic, and assured me it would be very simple after I'd done it a few times, and he was right. Just be prepared to feel like a chemist as you're mixing it all up (you have to do it yourself with a syringe because it's not stable enough to pre-mix in a little plastic vial like TOBI). I actually thought about doing a blog post on Colistin just in case anyone else ever found themselves in the same situation...maybe I still will! :) Hopefully you've had some training in how to mix it, but if not, don't worry, it really is easy once you do it a few times. (Also...I have major sinus issues, too. They told me to use a mask at home with the inhaled Colistin, which I did a few times, but then stopped. I don't know that it made much difference, but then again, I think it's also time for a sinus surgery clean out, so inhaling some stuff up my nose probably won't do much good.....it might be great for you, though! I think the first time I'm on it after my next sinus surgery, I'll start using the mask for sure.)
ReplyDeleteWow, sorry this got so long! Best of luck and I very much hope this antibiotic will help heal those little lungs of yours! :)
Thanks so much!! Oh my gosh when I opened the bag from the pharmacy I got a bit overwhelmed with all the little vials! Thankfully my pharmacist gave me awesome instructions. When she told me I would need syringes I was freaking out thinking the pharmacy had it all wrong haha! I'm hoping my sinuses clear up. I'm just not ready for surgery again. I hope they get yours good and clean! It certainly does suck.
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