It's back... kidney disease....

Ok, I've been meaning to write about this for awhile...just struggling with the words. Saying it makes it real, and I'm still in a bit of denial. So, my kidney disease is back. Actually, it's been back for awhile, but I was dead set on not starting the drugs until September. Unfortunately, my kidney's have other plans, and my nephrologist has decided that I shouldn't wait any longer. When the words "renal failure" are thrown out there, I stop being selfish and start paying attention.

Guess I should update/inform those of you who don't know. In September of 2005, I had a standard physical at work that indicated a high amount of protein in my urine, indicated by a simple dipstick. The nurse suggested that I tell my GP about it, which I did, and lots of peeing in jugs for 24 hours and a kidney biopsy 4 days before a flight to Sweden for Christmas, and I was diagnosed with a kidney disease. To be specific, my disease is called Minimal Change Disease, which really doesn't say much. I found a really good link the other day that helps explain it WAY better than I could....here it is

In layman's terms...my kidneys don't hold protein. A normal person loses about 150mg of protein in a 24 hour period through their kidneys. I lose more than 5000mg. Yep, that's right...LOTS OF PROTEIN. My nephrologist (kidney doctor) tried to lower the level using a type of blood pressure medication known sometimes to have an effect, but not much happened for me. So in July of 2006, I began taking steroids...prenisone, to be specific. And for those of you that haven't already figured this out...not all steroids bulk you up like a body builder. Funny how people think that someone taking steroids hasn't heard that joke a million times...even funnier that they think it's actually funny. Let me tell you..prednisone is no joking matter. There is absolutely not one single thing that is funny about it. If you think I'm joking...let's travel back in time a little...

Here's a photo of me on July 2, 2006. I believe this was 1 day after I began taking steroids. We were at the Formula 1 race with some friends that were visiting from Sweden:


Here we were at Freudenfest, which is a German festival in oldenburg, Indiana. This photo was taken 12 days later, on July 14. Notice how my face is already rounder.


Ok, here's where it gets painful for me. Here I am on August 13:


Shocking is putting it mildly, don't you think? I am in full-on chipmunk mode, don't you think? I try to make light of it, but truth is I'm scared out of my mind to take this journey again so soon.

There's a lot more than just steroids that I have to take. Prednisone is the devil, and can cause a host of other problems (high cholesterol, diabetes, osteoporosis, infection, so I have to take all of these other meds too (some of which have their own side effects...like an antibiotic that I have to take, which always causes me to get thrush)). Here's a visual:


Last time, I felt like such a victim. There's so very little information out there for people like me. Most of the time, it's children that have my disease, and there's a good chance they'll grow out of it. For me, no one knows why I got it, how I got it, or what I can do to prevent it (which is nothing, at this point). Luckily, I response very well medically to steroids (according to my nephrologist), but I have an extreme reaction physically and mentally. What you see in those pictures is one of the side effects of steroids....it's called Cushing's syndrome. Some people are lucky enough to not have these, but I seemed to have gotten them all the last time, and I'm guessing it won't be much different. I also became a diabetic for awhile...it's another side effect. Luckily it went away once I weaned off the drugs, but it's awful. Here's another link that provides some information on predinose side effects.

I feel like I'm wearing a fat suit. Like there's so much fat around my neck that it's squeezing my windpipe and I can't breathe. I wake up in a pool of sweat nightly. Most of my clothes don't fit. I can't see anything without my glasses. My brain feels like it's full of cobwebs, and conversation becomes difficult for me. I feel useless at work because I can't think complex thoughts...steroids just take it all away from me. And I'm angry...very very very angry. Ask Joacim. I'm sure he'll give you a litany of examples of my roid rage. Which is wha makes this so very scary for me. I have Izzy now....I can't let her hear me yell like I did before. I've gotta find a way to control that part so much better than I did, for me and my family.

Ok, so I've got a ridiculous amount of anxiety about this. What sucks for me is that my kidney disease causes me no outward physical problems. I don't have any swelling, or ANYTHING that would even let me know I had it in the first place if it hadn't been for that physical, so knowing that I have to take a medication as cruel as prednisone to treat something that doesn't cause me problems is really hard for me to wrap my head around. And this totally puts off even the thought of having another baby. I'm not ready, and Joacim isn't even on board with another baby, but I always have the hope that it'll happen. And it still can, but this puts it off for a minimum of a year and a half. Overall, I'll be dealing with the drugs (high dose and then weaning off) for 7-12 months, and then I'll need some time to ensure that my kidney's are functioning properly before my doctor will clear it.

So, I've begun taking some steps to be a bit more proactive than last time. I haven't started taking steroids yet, but I will in a few weeks (ironically enough, I'll probably start the same weekend as I did 3 years ago). I've started seeing a therapist to help me work through some of the issues I have with this, as well as to help Joacim "deal" with me. I've also started taking some anti-anxiety meds in order to get them in my system before I start with prednisone. I think that first pill I swallow will be the hardest thing I've ever done.

So, I'm asking for help. For some support from my friends. I started this blog when I was pregnant to let everyone know how we were doing, but it's going to be a place I go to for support to vent in the future. I thank anyone for listening....