Patchy ground glass opacities found on 2 CTs(chest)

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.

Kristopher

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kmb,

Hi! Good to see you here more often. The only thing that I have been told about the ground glass opacities, is that is is just the look of the way some shattered glass on the ground looks. Mind you not, It had not been all the doctors that I had asked, it came from people on here. This is the only way I can at least partially or better understand most things that my doctors never answer. Last year they told me that It looks like I may have a MCTD so, until I can afford to go see a rheumie I will be able (Hopefully) to get some answers. I'm looking forward getting some answers and relief soon. Now that I won my case for disability. I hope and pray that everything works out for you too Kristopher.

Love,Markell

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with your hx an having pneumonia I would think u need to be on pred for a minimum of a year not just a few weeks u will continue to relapse u need to be your own advocate read read an become an expert on sarc.get the free pamplet on sarcoid an your body . best of luck an best wishes keep coming back to this site an read all the posts it will help . Billie(indiana)

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Hi Markell,
I am glad you got your disability to go through. One less thing to stress over. I would like to be more involved here again but it takes so long to write out the simplest reply or post. My cat knocked a drink over on my laptop so its about shot. We bought a wireless mouse and keyboard but everytime I get to writing something i get a string of aaaaaaaaaaaaaaaaaaaaaaaaaaa and mostly have to stop and start over. Added to that my hands have no coordination and ache so much anymore means its easier not to bother most times. I took an hour or two out to try to find some answers by posting my question. Over 10yrs w/ sarc I havent had any chest xrays or CTs until now show anything other than lymph nodes enlarged so I am leaning toward agreeing w/ the new pulmonary doctor who thinks it isnt the sarcoid. Like Billie pointed out, it takes quite awhile to see significant improvement from pred for sarcoid. That I had improvement w/ 10 days of pred gives me great hope that this will soon be behind me.

It seems like you were frustrated too by the doctors being unable to give you more definitive answers about what patchy ground glass opacities mean exactly. From what I have read they can mean so many things and are just a general term for abnormalities. It can be pneumonia, interstial lung disease, etc, etc. I hope you can get to see a rheumy soon. Added the CTD to the sarcoid has been rough but it was good to know what was going on. Thank you for taking time out to reply to my post. Best wishes.

Kristopher

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Hi Billie,
Since you are a new member here I would like to welcome you to our little club, (that no one wants to be a member of!). You are spot on when saying you need to be your own advocate as it is so easy to fall through the cracks w/ a rare incurable disease like sarcoidosis. You are also right that we must learn as much as possible about this disease in order to advocate the best care for ourselves and be informed enough to make important decisions w/ our doctors as part of a team. I have over 10+ yrs w/ biopsy proven sarcoidosis and over 2+ years as a member of the Inspire family. I have read, replied, posted, and participated here faithfully throughout that time and have taken up learning as much about this disease as possible, almost like a job in a way. Despite this I dont consider myself anything near an "expert" on this disease or any other AI disease such as the CTD I also have. The courses this disease can take are so unpredicable and seemingly random that I am still baffled at times. This is not to discourage you or anyone else reading this from learning as much as possible and becoming knowlegable has helped me so much in my fight against sarcoid and AI disease in general. While I've never heard of a years worth of pred for a respiratory infection like pneumonia, I am not in the medical field. But I will make an effort to report back after my follow up appts and report what the doctors say in hopes that someone might be able to gain some insight from what I have been going through if/when they are in the same situation. Thank you for responding to my post. Best wishes.

Kristopher

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"patchy (ground glass) opacities" show up in the descriptions on my stepmom's latest CT scan- she has broncheictisis, which is thickened bronchial tubes, due to several severe bouts of pneumonia when she was a young adult. The tubes have pockets that can fill with bacteria/viruses, so she's prone to infections. This CT had these descriptors after she was on steroids for a severe infection. So, I agree this sounds like something besides sarc-

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Hi CO,
They take that being a native thing a little serious up there huh? Thank you for your reply. I am sorry to hear of your step moms bronchiostasis as that is a tough condition to have. I hope she is doing better now or will be doing better soon. I hope you and the new pulmonary doctor are right, we will see. Thanks again.

Kristopher

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