Iohexol test results....

And, apparently my kidneys are still functioning pretty well.  You think I'd be happy about that, wouldn't you?  Well, I'm not, because I felt that this test would PROVE to the powers that be that I was perfect for a transplant.  But with these results, I'm guessing it's unlikely.

Dr. I at the U wants to send my blood to a lab to get some genetic testing done on it.  According to him, if I have this particular mutation, then my chance for FSGS recurrence after transplant is around 5%, instead of the 30-50% without the mutation.

Unfortunately, at this time, my insurance doesn't cover the test.

And it's $5300.

That's a hefty chunk of change to dish out to get an answer that only helps me if I get a transplant, and that's a BIG if at this point.

So now I'm bummed, and the funk is coming.  I can feel the heaviness because I know that this awful limbo will continue.

What frustrates me (and I know this sounds selfish, but so what) is that I feel like I've tried to do so much to get awareness out about FSGS, and I think it'd be really great if there was some kind of a grant that I could get to pay for this.  Hell...how much money have I raised for this cause?  Probably enough to pay for this test.

I'm just spouting angry words right now....I feel better tomorrow, I'm just a bitter betty right now.

Iohexol test today....

I'm here at U of M right now getting the iohexol test done.  I love that this was able to get done so quickly!  They gave me the injection about 40 minutes ago, so I have 2 hours from that time to wait, then it's a bunch of blood draws between hours 2 and 4.  I could get up and walk around, but it's pretty muggy and warm outside, and I don't know my way around campus (which is a shame, because it looks beautiful, and maybe it would make me feel young again???).  Instead, I'm sitting here in my little chair, typing this blog post.  I'm trying hard to work, but the internet is so slow, that it's making getting any emailing done difficult if not impossible at times.

Combine this with the fact that, any time I sit down for extended periods of time uninterrupted, and I fall asleep.  Case in point:  Sunday at the Twins game.  I could've napped for hours there.  I can feel the sleepiness coming on right now, even though I got plenty of sleep last night.  Maybe it's just my body's reaction to an opportunity for quiet...it wants to go into hibernation mode.  I'm going to try to fight it, but I'm sure I'll lose in the end, at least for a little while.

I look around here at the other patients, and it always hits me how out-of-place I must seem.  I come in here, full of energy and healthy looking, yet I look around and all I see is sickness.  There's someone here who is doing the same test as me, and then has to go get radiation for cancer later on today.  I saw a person walking past me a bit ago, and his arms were covered in purple bruises, a sure sign of long-term prednisone usage.  The shuffle steps, hunched over stances...it just really hits me that I don't want that to be me.  Ever.  But especially not now, when I'm in the prime of my life.

My day started early this morning, snuggling with Izzy who crawled into our bed after losing her blankie in the middle of the night.  She curled up next to me (sharing my pillow of course) and we snuggled like crazy.  Eventually we got up, got her breakfast, dressed, and braided her hair for "school" today...they have a field trip.  Then I'm off to here to get this test done.  I need to fit in lunch somewhere in there, and then it's off to work to celebrate the last few days of one of our summer interns, plus get a few lose ends tied up.  Then I'll drive back home, take Rosie to the vet, mow the lawn or make dinner (I'm hoping dinner because it's hot as hell out today), and then maybe blog on my personal blog.  I'll get Izzy bathed and read her a book, and then bed, and this is a pretty light day.  Joacim will be travelling the next couple of days, so it'll increase the load.

People often wonder how I do it, and I can see why they're surprised when I see the people that are surrounding me.  These people...their health issues are their whole life.  Mine consume and affect my whole life, but can't be my whole life.  I have a small child getting ready to start kindergarten.  I have a job that I like and want to be good at.  I have a husband to pay attention to too!  I like to do things, explore new places, eat at good restaurants.  I have too much living to do!  And this is EXACTLY why I'm pursuing this.  I've been advised that I'm crazy, but screw it.  I'll admit that I'm constantly pushing past my own physical boundaries....I think sometimes it's just expected because I don't "look" sick.  I guess I need a port access and gray pallor to my skin in order to be recognized as being ill.

As a side note, my transplant coordinator just informed me that I'm going to be listed (inactive) for a transplant!!!!  This is HUGE!!!  This means that I'm on the list, and my wait time starts from today rather than when I become "active"!!!!

One hour down....3 more to go....