Thursday, January 20, 2011

The roller coaster continues.

Early in the morning on January 6th I woke up having horrible chest pain in the same place that my left lung collapsed a year and a half ago. It only continued the odyssey of the never ending infection that just won't die! I went to the ER, no collapse, that's good news. I had PFTs done. Down 17% from 3 weeks prior, not good news. I put my foot down. Stronger antibiotics, now. This on and off shit wasn't cutting it.

If you've been following my blog for a while you'll know that I dispise my CF clinic. They don't listen, aren't aggressive, rarely let me see the one doctor that I do like, and in general act like they don't care much. No one there ever seems to comprehend the fact that I know my body and my disease better than they ever will. Unfortunately, there isn't anywhere else I can go without moving which isn't an option right now unless someone out there wants to pay for me to get settled into a new place.

All of that is why I had a fit when I was told that the doctors didn't want to give me tobramycin (one of the better, and stronger antibiotics out there, complete with terrible side effects) because I already had some minor hearing loss from it. I looked into that nurses face and said "I'd rather be deaf than dead!" I must have struck some kind of chord with her because I got my tobra. I also got zosyn, which is another strong antibiotic. Its a combination of 2 drugs and must be administered every 6 hours. A pain in the ass for sure, but if it kills this thing then so be it. I can sleep during the day if I need to. I made them keep me in the hospital over night because the zosyn was a new med for me. Since we still don't know what triggered my seizures I didn't want to chance having another one at home alone while on a new med.

Fast forward 2 weeks. I'm feeling better. I've been coughing up buckets of wretched slime from my lungs. I've done the cough and puke manouver more times than I can count lately. I've lost 5 pounds from the vomiting and the ab workout that is a side effect of it. If you want a flat stomach quickly cough and puke is the way to go. Not fun, but it gets results.

My cough started to taper off over the weekend. On Tuesday I actually I had some energy for the first time in a long time. I was able to be productive around the house. Yesterday I went in for follow up PFTs. I'm back to baseline. But again I put my foot down, another week of the meds. The past few month's track record doesn't speak highly for only doing 2 weeks, neither does the fact that I've only JUST started feeling better. I won, half way at least. No more tobra, they're worried about my ears. I'd still rather be deaf than dead, but the kidney failure it can cause worries me and I don't want to push that issue.

We're still waiting on the sensitivities for the MAC, it grows so slow. But when that comes back I'll push to treat it. I don't have the lung function to spare on a wait and see approach. If the CF clinic won't treat it I'll find an infectious disease specialist. One of these days maybe they'll learn that I'm in charge, not them.

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