Monday, February 11, 2008

Information gathering

I just spoke with my Rheumatologist who is my biggest ally. She has been my Rheumatologist for well over 9 years and totally gets me. I'm pretty lucky.

Anyway, she told me that she had spoken with my Nephrologist and that he shared some of his immediate reactions with her following the biopsy. I'm apparently losing 7,000 mg of protein/day rather than the 4,000 mg I was told I was losing before (remember the highest limit of normal is 100 mg/day). There is also scarring present on my kidneys (both old and new scarring) BUT there is not a lot of inflammation - I don't get it either.

She said that I have the type of kidney disease that is not treatable, but responds to treatment - again, don't get it. And, that it is the kind that will simmer around for a long time and will possibly (or definitely, still not sure) cause kidney failure. She thinks that he is going to start me off on Cellcept and see whether I respond to that. I will find out definitively on the 25th - two weeks away. It seems like a long time to wait.

The real bummer for me right now is that I can't take any NSAIDS (non-steroidal anti-inflammatories) anymore. Instead, I can either increase my prednisone dose (sucks) or take narcotic pain medication like Darvaset (even suckier) to reduce joint pain. I don't know, it seems like there's going to be a lot of balancing and bad options in the future.

However, I've got to say I'm still feeling pretty positive about everything. All I can do is take care of myself to the best of my ability and wait and see. For now, that's okay with me.


Given55 said...

You know, you read a blog a few times and you feel like you come to know a person. I feel that way about you and it grieved me to hear your news. I am praying for you.

Julie said...

Hey Butterfly Girl, following your blog. waiting to hear my own news. Thank you for sharing. I love your hopefulness. - Julie