I had to go to my rheumetologist (Dr. C)on Friday morning, for my 2-3 month routine check-up. He is trying to spread my check-up times out, but that won't be happening for a while.
I have what my last doctor (Dr. K) called Vanishing Lung Syndrome. There is VERY LITTLE information available on it. Dr. K was treating me with steroids. I have been pn prednisone for the past 4 years, and he ws slowly taking me off of it. I was almost completely off when I switched docs at the beginning of the year, and as of March, I am completely off of them -- which is a good thing -- to a point. Since then, my breathing has taking a turn for the worse and also causing me a lot of pain!! I was in tears in the office yesterday and I think that got his attention. He has ordered several tests, and trip to a lung specialist. Then after all of that, I have to go see him again - all by August 18. I have to go Monday to have a pulminary function test - which I know the results are going to be horrible. I also had a CT scan -- with contrast -YUCK!! For those of you who don't know about that, all I have to say is YUCK!! The contrast is what my mom and I call 'liquid highlighter' and you have to drink what seems like gallons of this (I am just gagging thinking about it -- I am really trying to sike myself up for this!!).
Then I have my appointment with a lung specialist (Dr. J) on what was going to be our first day of school!!! So, it looks like we will be starting on Sat or Sun of that week, just so I can stay on track with what I have planned -- I know not to detail plan to far out, but you got to plan the first week!! Dr. C think he will want a lung biopsy. And no telling what else.
Dr. C said that after we got all that taken care of, I need to go back and see him and unless Dr. J can do something to help, he will put me on some stronger medicine -- which totally blows his goals for me out of the water. He was hoping that he could work me off my meds. Which is a good goal to have, but not right now.
When I was there, he said that my lab results from May were pretty crazy and showed that my Lupus is very active right now. He made no changes in anything for now, he wants to see me in a month.
Please keep me and more importantly, my doctors in your prayers, that we can figure out what is going on with me and get things under control.