I had an appointment with my nephrologist on Friday. I knew the news wouldn't be so good because I had my lab results already.
When I started this journey again, my 24-hr protein was ~5800 mg. After 17 weeks of being on steroids, it's only dropped to ~4700 mg. Not stellar progess when you consider that I wanna be below 500 mg. Soooo, what does all this mean? Well, I'm not totally sure right now. It's possible that my initial diagnosis of Minimal Change Disease may not be correct. I knew this to be a possibility from the get-go...but since I responded to steroids so well the last time (according to my doctor) we thought that was it. Now, since I'm not responding this time, we're not so sure. See, when they did the kidney biopsy originally, it's possible that I had a different kidney disease then, but the biopsy needle didn't hit the right spot, so they diagnosed me with MCD. The other kidney disease (and the one I might have now) is called FSGS, or Focal Segmental Glomerulosclerosis. Here is a link to some more information about it.
Sooo, the plan is to start weaning me off of steroids immediately, as in today. I'll drop by 10 mg for 2 weeks, then another 10 mg, then we'll slow the taper to 5 mg every 2-3 weeks to prevent steroid withdrawal. Once I'm down to a low level (5-10mg) I'll start on a drug called cyclosporine. I'm still researching all of this, so I don't have a lot of answers right now, but I do know that the whole moon face/buffalo hump/apple belly/diabetes crap should subside (but I'll still have to work like hell to get the weight off). However, hair growth is a side effect (sounds great, right :). Guess there's a trade-off for everything, and I'll take this one at this point. Personally, I know this doesn't sound like good news, and it isn't, but it's good news for me to get off these steroids. I hate them...I hate ever single waking minute that I'm aware that I'm on them, and I won't miss feeling "thick".
I'm also going to get another kidney biopsy in December. I'm trying to get it scheduled for the week before the week before Christmas (December 16, 17 or 18). That way, I have PLENTY of time to recover from it. I WAYYYY underestimated how painful it would be and overestimated how quickly I would recover! Not this time....my friend. The really bad thing is that I will have to spend the night in the hospital, and this will be my first official night away from Izzy (which I hate...I wanted that decision to be on my terms...not because of something like this). Guess I gotta cut that invisible umbilical cord at some point.
So, that's what I know. I can't jump to too many conclusions until I have the biopsy results back. And I know that this swelling won't go away until next year, but I know it'll go away, and that's positive for me.
No comments:
Post a Comment