Back in early Dec I had a bad case of bronchitis/flu. Despite a Zpac then around xmas a round of doxycyline and a medrol pac I was still having problems. I went to pulmonary appt on 1/26 and they ordered CT and to come back on 1/28. Doctor noted shadows but said it was probably NOT sarcoid and ordered a Pulmicort inhaler(4 extra budesonise, a steroid) to use w/ my Symbicort and ProAir HFA(albuterol) inhaler. I did not feel this was helping in the least and when I went back to Baptist Hospital on 2/13 I had my prior appts run over for my rheumy and PM doctor so I was too late for my PFT. They said there wasnt eneough time to do it and the doctor couldnt see me. I went home to Savannah(hospital is in Jax, FL long story but just didnt want to change docs while having trouble after our move). I didnt get another appt til 3/15! When I came back a NP came in despite the fact I had asked to see the doctor specifically. I waited until the doctor could see me then he told me I had patchy ground glass opacities on my CT. He didnt do a very good job of explaining what these were though and said it could mean any # of things since I not only have sarcoidosis but a connective tissue disease now as well. He order 20mg prednisone for 10 days then another CT. I did this but have yet to see him as my appt isnt til 4/13! I felt I was just getting worse so I researched pulmos in Savannah on Healthgrades and found what looked like the best one, called and asked did she see many w/ sarcoid and made an appt. for 4/6.
During this appt. she wondered the same thing I had. Why would the doctor let me go so long for a follow up and w/out anything more than an inhaled steroid when I had an abnormal CT, history of sarc and CTD. She compared the CTs and said it looked like there was some improvement but not all cleared up. She told me it looked to her like I had pneumonia. She ordered a Decadron shot in office, CEFTIN(antibiotic) then 14 days of pred starting at 40mg for a few days then 30mg for few all way down to 10mg then come back 2 days after I finish meds. I plan to go to my follow up w/ other pulmo on 4/13 just to see what he says but am pretty down on him after the way his office treated me.[My records werent ready when I went to other doctor, they always take like 2days to call me back even when I had a fever on prednisone so I am pretty done w/ them).
I was very frightened by this whole scenario after thinking I was in good hands! My anxiety levels have been very high and making my breathing worse. I kept thinking back to a time several years ago when a similar series of events landed me in ER after I totally stopped breathing. 100%, no air intake at all. Luckily I was at my parents house when this happened and they rushed me to hospital which was very close by, thank god(2-3 miles). That was the longest 10 min ride Ive ever taken and the only time I ever knew true fear as I didnt think I was going to make it. They did ABG at ER and said my oxygeon was low and I was right where I needed to be. I got pulsed steroids and nebulizer treatments and antibiotics and recovered.
The thing that gets me is all that time I was just sitting here at home thinking I am really sick here(didnt know how bad really) and w/ my dual autoimmune dx and breathing/lung issues, i feel lucky right now to be alive. Last night I finally drew a full breath, I almost couldnt believe it. It had been so long since I had had a full breath or one at least one that was not painful. Hopefully that means I am getting better. I am almost afraid of titrating down off the pred after taking the 40mg from wed to sat, I am due for 30 today so I will try and see how I do.
Does anyone have anything similar that they went through? I am pretty confused as I never really had alot of pulmonary issues(other than almost dying,lol) w/ the sarc so new pulmo doesnt think its realted to sarc and believes its more due to my SLE/MCTD and pneumonia. I was confused when it was just the sarcoid! I know one thing and that is I dont want to go through another episode like this as I get a bad resp. infection at least once or twice a year. Anyone w/ any thoughts? I would really appreciate them right now. I know I put out quite a bit of info but this has just been building up for over 3months and I needed to get it out and get some feedback. Thanx in advance.