Clinic Visit Blues

Pre diagnosis (birth-21yo) I had so many times where I 'knew' something was going on in my body but noone understood, took the time to listen, or if they did just couldn't figure it out and I HATED that feeling! To this day if someone acts in a manner in which I think they are treating me stupid or like they dont believe me I have a tendency to freak out. I absolutely hate feeling belittled or not believed. I dont have a PhD but I AM in tune with my body.

SO anyway after hemoptysis last night, not much, all bright red, tiny clots, ended within an hour I went to CF clinic today. They already did an xray last week which by sounds of it looked better than prior years and I couldnt blow PFT's since I had bled within 24 hours so we just did the chat. Dr. says we need to do some sort tretment, orals or IV's question is what. I told him I was 100% committed to doing anything that needed to get better but I felt uncomfortable doing a 'just because' I want to know what is going on and why we are doing it and I am a bit annoyed at this point.

He said he understood and wanted to check my cultures, they had done two recently and they showed the same as always with only notable things being mucoid PA sensitive to all IV's and cipro/ceftaz (never work for me though) and achromabacter x which is resistant to most everything.

PLAN: well he said with my recent bout of low grade off and on fevers coupled with occasional joint pain perhaps I have one of the rarer bugs causing pneumonia and that by the time they tested for it I could have treated it as the treatment would be 5 days zithromax so instead mwf I will do 5 days straight and see how that goes and check back in a week. In the mean time I asked him if they checked my cultures for myco bacteria and he said no but they should probably do that so we did another culture today.

I will check back in next week unless the bleeding restarts. fun fun fun I am still having pain in and around my left shoulder though they couldnt hear anything (they never can) my lungs always 'sound good' the doctor even went and got his 'good' stethoscope last time and disinfected it. so I guess it sounds reasonable, I am glad I dont have to miss owrk things are CRAZY right now and I submitted paperwork today to get a loaner laptop for a 3 month period so if things do go awry I can keep up on my work which will take a bit of stress off of me.

So what do you think? Does it sound reasonable? any ideas??