Thanks for answerering guys. I did ask my doctor about it, over the phone, I am 4+ hours away right now, they dont think its pneumonia though.
See a lot has happened in November for me. About the week before Halloween, I started having this weird popping, or clicking sound and feeling near my heart on my chest. I checked my sats and heartrate and nothing seemed abnormal. I described it to my doctor as it felt like gas bubbling to the top and hitting my chest b/c it didnt go with my breathing or with my heart rate. Then a couple days after that, I got this rattle in my left lower lobe, that I could not cough out, I would a huff cough as hard as I could and it would be clear, yet I couldnt shake it. I basically slept only on my right side as those were just annoying, but not necessarily painful.
Well I had a clinic appt. scheduled for the 8th of Nov, b/c I thought I needed ivs, my sats had been a little worse than normal but we all (doctors and I) attributed it to needing ivs for an exacerbation. My pfts were 33%, when I typically range from 39%-41%. So based on all my symptoms I was admitted to the hospital. I got an x-ray done to see if the rattle was a pneumonia spot and it turns out it was a partially collasped lung (so thats pretty much 2 weeks of walking around w/ a partially collasped lung... I even went to S.F. early a couple days to hang out with a friend, and we went walking around a LOT lol).
I had no idea. But it explained the bubbling/clicking/popping sound I had ha.
So when they reinflated the lung w/ a pigtail chest tube and suction, thats when it started hurting... instead of a brick being lifted off my chest, I felt like it was put on my chest... it was crazy.
I had pain pills, which backed me up a bit, then on top of it started bactrim which always makes me nauseous. I was trying to do tube feeds it was horrible.
My docs said that my old culture had my M.A. as pretty much resistant except to tigacycline so they had decided they arent treating that at all b/c I need to have some reserve drugs for after transplant. Then my new cultures showed a pan-resistant psuedo but intermediate to zosyn which Im allergic too (but desensativity is an option). I was on merrem and bactrim and feeling better at the time, so we just went with those at home b/c we based off how I was feeling as well as not wanting to change drugs half way through. Then I got a ct scan which showed in about a year, a tiny cyst, grew to the size of a golf ball, so they are worried about that but cant say if its M.A. or any other bug I have. My doc said I have very atypical cf lungs b/c my cysts are huge where as most cf'ers have little ones.
So it all kinda scared the crap out of me, normally im pretty tough and optimistic but it really hit me that, transplant might be sooner rather than later based on my sensativies. I feel like the past 2 years have been a rollercoaster... it was introduced in 2008 and so its like, transplant is within a year, then I do good for a while and its like transplant is years away, then its like transplant is ASAP... so Im just like, whoa.
My doc said that sensativies are somewhat controversial in the cf world and that some docs dont even use them (can you believe that). Basically he said with the culture, "You are picking a tree out of the forest" metaphorically.
On top of this, Im trying to move in with my boyfriend (which is good, but stressful), my mom got a kidney stone and she was my nurse (the only reason I got to leave the hospital earlier) and I am trying to graduate this year, but have missed over 3 weeks of school and counting, not that my teachers arent super nice and accomadating, but Im going to have to make up the work somehow, and I hate to say it, but I wish they would just excuse me of the few things in each class (luckily only have 2 right now) and let me walk without having to take incompletes to make up by next spring, b/c I feel like, I might be living in LA by then (the hospital who said they would tx me, is UCLA).
le sigh. sorry to unload, but its hard not to stress right now... i actually got prescribed ativan for home use now haha.
I looked up some more about Bactrim, and on a testimonal site (which is both good and bad lol) some people did say they felt like super achy and mentioned muscle soreness too (Others were like, I puked and had diarrhea, well duh! its and abx). I think since its such a high dose it was just killing me.
And I had some bad hemoptysis episodes, well for me, and it was over turkey weekend, on on monday my doctors said well if that happens again, I need to go to s.f. to have an embolization maybe b/c it could be that cyst.
I am done with my treatment b/c my docs were thinking that might be the pain so they didnt up me for another week (thank goodness), and I see them in a week for pfts, a CT scan (see what that golf ball sized one did) and check up.
Again thanks for reading, if you made it this far. Its definitely not the worst thing that could be happening, but its still hard to deal with everything going on around me I feel like, and since i still feel pretty shitty, I think I feel less in control b/c I cant really help out with anything.