In this nightmare I seem to be living out by having to deal with all this "medical mess" sometimes, Dr. Olson seems to be the constant I can count on. She did talk with Dr. Neal, my rheumatologist that very night apparently! Impressed! I got in to see him on Wednesday because of a lucky cancellation.
It was an interesting visit - one of those where you get really excited at first and think YAY - things are so much better than I thought, then the balloon is instantly deflated and you leave wondering what happened...yeah, like that :).
So, Dr. Neal walked into the exam room and said he'd spoken with Dr. Olson about the Churg Strauss diagnosis. He said he pretty much agreed with he and thought treatment was warranted because of all I have experienced. He stressed that he didn't foresee it being a big deal at all. He thought that a simple couple of months of the treatment would stop and even reverse my symptoms. We'd be able to stop the treatment and all would be well. He didn't think side effects would be a huge concern even in my situation because of the short term need. This all sounded WAY too good to be true - and we all know what that can sometimes mean. :(
Because he had mentioned that his most recent lab data was what he had ordered back in March, I pulled the reports I had brought to show him from my most recent visit to National Jewish. I had the reports from Dr. Maleki, the rheumatologist, Dr. Olson, and Dr. Katial. They were just the initial summaries from the visit, but provided more details & data than Dr. Neal had on hand. He started reading through Dr. Maleki's report immediately and making long faces and groaning. Then he started pointing his finger at me with a "wait a minute" type gesture. My stomach started to sink. I wanted to grab his hand like a 2nd grader and say "No backsies Mr.! You already gave me the good news!" I could feel my hands getting clammy as I waited...
He slowly looked up at me and said, "Okay, you've progressed quite rapidly since I saw you in March. These numbers are remarkably high. I'm afraid the outlook might be a little different than what I described..."
"What do you mean" I asked.
He proceeded to explain that my case is complicated (where haven't I heard that one before!). At this point he can't even give me a ballpark figure of how long I will need to be on the treatment or how my body will react to it. He still has every reason to be positive, but it does seem that it will be more difficult than what he had at first described. It's still an answer and a plan and that in itself is a good thing. He said the most important thing for now is getting that labwork and making sure I can take the drug. I told him the labs had been drawn Friday. He was delighted the process had been started. He expected them to be ready as early as tomorrow but no later than this Friday. He prescribed the treatment so that as soon as the labs came in, assuming positive results, he could call me and I could start taking it immediately. He, like Dr. Olson, was adamant that no more time could be wasted.
I left feeling slightly overwhelmed and more informed all at the same time.
