Monday, February 25, 2008

Diagnosis Day

Well today was the day that I've been waiting for - Diagnosis Day. It's kind of anticlimactic to be honest.

I have Lupus Nephritis mixed class III/V. I'm still not exactly clear on what that means, especially with this mixed class thing - if anyone out there understands this more than me please share. To start with, I'll be on an increased prednisone dose of 40 mg per day for about a month. In addition, I'm continuing to take high blood pressure medication and a diuretic. My doctor is also starting me on Cellcept therapy to see if it works. If not, then I guess he'll try Cytotoxin (or Cytoxin).

I'm not exactly sure how to feel about all this. I guess this diagnosis is not a surprise and certainly not the worst case scenario, but it still feels kind of scary. I know what to expect from higher doses of steriods - nothing good definitely but at least it's somewhat familiar and I can kind of plan for the side effects. I am NOT sure what to expect from the Cellcept therapy. Again, if anyone has any experience with Cellcept please share it with me.

Mostly, I'm trying to plan for the next few months and to try to figure out how this will all work with a job, doctor's appts., medication adjustments, etc. How do people do this? Maybe it won't be as severe a change as I'm fearing. The thing is, I really would like to change my job (desperately in fact) but right now seems like a bad time to do it. Of course, I also have a job interview scheduled for this afternoon, maybe not the best planning strategy.

I just feel a little stuck in situations that are not ideal mainly because of this new diagnosis and it's soooo frustrating. Also, it seems although I've received a diagnosis and initial treatment plan, this is still a wait and see game - not something I do particularly well. I want someone to say "You have X and if you do treatment Y you should expect a Z outcome." Unfortunately, that's not the case here - I have to see if Cellcept works and if I tolerate it, possibly test other medications, and still there is now guarantee that the nephritis will go into remission.

I think my new strategy is to trust in my doctors and just do everything that I can to take care of myself. That's it for now.

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.

Friday, February 8, 2008


So I am home from the hospital after undergoing a kidney biopsy (my left kidney incidentally). I was very freaked out by this procedure before going into the hospital. I don't know, something about a very long needle being shoved into a major organ repeatedly didn't really appeal to my sense of excitement. BUT, I'm here to say that it wasn't really that bad. AND that you don't get any fun pain medications, only Tylenol.

Not to say that the actual shoving in of the needle wasn't painful because it was, but then it's over. They numb most of the area around your kidney, including muscle, tissue, etc. and then they do the biopsy. The numbing process was way more painful than the actual needle biopsy. In my case, they took four tissue samples so hopefully I will not have to do it again. I would say the most annoying part about the whole thing was having to lie pretty much straight on my back for 10 hours following the procedure. And having to spend the night in the hospital. I really hate being woken up to someone sticking a needle in my arm.

Anyway, I'm home now and I feel so optimistic for the future. I feel like I had this whole biopsy thing built up in my head and it really just wasn't that bad. I don't know. I feel good now and I want to stay that way. There are many things I need to change in my life to accomodate this new kidney involvement issue, but I feel really ready for the challenge. Life is too short to spend worrying about what may be down the road - and I don't mean that in a hedonistic way. I just mean that I'm really excited to be on the journey that I am on in life. In my last post I talked about a new path and I had all of these negative associations with it. But I think really, like many people, I'm just not a huge fan of change. I resist it. But in the act of resisting the inevitable, I create all of this tension.

I don't know, basically I'm saying that I'm trying to go with the flow and enjoy each moment. Also, that I'm embracing this new opportunity to learn about myself and care for myself in the best way possible. Does anyone have any suggestions about diet with kidney disease? I know low salt, but what else? I've begun eliminating wheat, dairy, caffeine, sugar, alcohol but am open to other suggestions.

That's it for now. Just kinda hanging out and recupperating. I'm looking forward to being able to excercise and get outside.