February 20, 2010

6 years of one weirdness explained

So I am a bit different . . . odd . . . weird . . . I march to the beat of my own drum.

I always have been and I am totally ok with it now. (I used to feel very insecure about it.)

Even in high school I didn't feel the need to "fit in".

I have always done my own thing.

Well, 6 years ago I went to the dr. because when we went to increase our life insurance, they discovered I was spilling protein in my urine (sorry to much info?) Anyway, I went to my primary who ran tests and sent me to a nephrologist (kidney dr.) and a rheumatologist (lupus dr.). They thought I was developing lupus and it was attacking my kidneys. Not such a great thing!

So I went through more tests and more tests and the results were always the same "You are weird. We don't know what is going on with you so we are just going to watch you". Great - I now had laboratory proof that I was, and still am, officially weird. My labs were off enough to show something going on but not off enough to do anything about.

We delayed having Evan because they were afraid that a pregnancy would trigger a full lupus outbreak. After a year of waiting and watching and nothing changing we finally decided we didn't want to wait any longer and got pregnant. Everything was fine during the pregnancy but they worried about after the pregnancy and that my auto-immune system kicking back into gear would trigger it. Nope, we were lucky and I was just fine and went back to my exact same level of weirdness.

We decided that baby #4 probably just wasn't meant to be. We risked it once with Evan and got lucky. We didn't want to risk it again. I would rather have 3 kids with a healthy mom than 4 with a sick mom. So poor baby #4 just isn't in the plans but we think of him often and he does have a name and causes all sorts of trouble around the house. If the kids won't fess up to making a mess, we say "hmmm, must have been Trevor."

Well, a year ago I switched kidney doctors. The new dr. started off the same "yep, your weird." He thought I was boring because he couldn't do anything to treat me because the treatments he could do had bad side effects so the treatment wasn't worth it because my labs weren't off enough. But what was great was this dr. thought outside the box. Long story short he tried something different that wasn't even in his field to treat.

So during the time he was trying that (it was a 3 month treatment) I went to my primary because I thought I had a bladder infection. They did the urine test and discovered that I didn't have an infection but that I had A LOT of blood in my urine. They sent me directly over to get x-rays of my kidneys. Very scary and freaky; especially because Kurt's cell had died and I couldn't get ahold of him to come be with me.

Well the x-ray showed that I didn't have 1, didn't have 2, but that I had 3 kidney stones! No wonder my kidneys were spilling blood, they are getting beaten up with stones moving around in them.

So I sent those results to the kidney dr. and he got all excited! Finally he had something he could work with. He ordered CT scans, lab work, had lab work mailed to me from back east. All sorts of good stuff!

When we got the labs back they showed that my ana test has gone back to negative (because of the 3 month treatment) which would show that I am not developing lupus! SWEET! That is great. My rheumatologist says I still have 2 little labs that are not normal but what does he expect - I am a bit weird - even my blood.

So my nephrologist said he doesn't need to see me anymore because my kidneys are fine - they just have stones which have cause the protein and blood for the last 6 years! But now I have to go to a urologist to deal with the stones. Turns out 1 stone was not a stone after all. So I have 2 stones: one stone on my left side which the urologist said would drop me to my knees when it decides to pass - looking forward to that! And I have one on my right side that is the size of half a grown man's pinky finger. It's a BIGGY! They are going to have to blast it with waves and the chunks that come off of it may even be too big to pass so they may have to blast again. I have been growing this one for quite awhile - apparently 6 years!

So after 6 years of "your weird" we finally have something to work with. I go in on March 1st for the blasting! Hopefully this will solve the mystery.

And who knows, maybe Trevor will get his chance to join our family after all!


Melissa said...

So glad you finally have an answer! I remember talking with you about it, 6 years ago. Hope Baby #4 works out too. I've loved having my extra one when we didn't know if we could have more either.

Andrew and Cori said...

I've had kidney stones twice... I am so sorry. Let me tell you, the pain rivals labor pains before your epidural and may even be worse... Good luck. :) I'm glad they found something, though. The pain will be worth it if it means your life moves on and Trevor gets to come!

Nikki said...

Woo-hoo! Jenn, I am so happy for you, minus the whole stones issue. And who knows, you may add another girl to the clan.

Forever Green said...

Hi Jenn, I'm so glad they are getting this figured out and are able to do something about it! I have to say though... If we get to have another boy, he will be a Trevor too. I wanted to name Brandon Trevor, but Joe won out this time. Hope you don't mind us sharing the name. :o) Good luck with the blasting on Monday. I'll keep you in my prayers! Love ya!