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....

Transplant update....good news actually!!!

It's funny....I woke up today trying to find excuses to get out of going to the U of M this afternoon for a consultation with ANOTHER transplant nephrologist.

Let me sidetrack a little bit by saying that I wake up EVERY day looking for excuses to get out of whatever I have planned.  And it's not really because I don't want to do that particular activity....it's more because I don't want to do anything.  At all.  Except for lie down and watch TV.  Oh wait, I already blogged about that problem....well, at least I'm consistent :)  In all seriousness, I think this is part of the kidney disease and part of the anti-depressants.  I mean, I'm extraordinarily tired, and everything requires planning and effort now, so it kinda sucks the fun out of things sometimes.  But also, there are no true joys right now, emotionally.  No butterflies...no living in the moment.  I just feel emotionally dead.  That being said, I think I'm going to try to wean off of these damn "happy" pills.  I figure the best way to do this is to start seeing a therapist, but I'm not exactly sure how I'll be able to find time to do that.  I mean, it would be borderline irresponsible to wreak my emotional havoc on my family by going "cold turkey" off of these things...that's just stupid and at least I know that.  But I WOULD like to get off of them...

Anyway, back to my appointment.  All I can say is that I'm glad I didn't find an excuse.  I think I didn't want to go, initially, because I thought it was just going to be another "no" appointment, but that wasn't the case, happily!

These are the doctor's notes from our meeting.  I'm going to have a hard time conveying how important this particular meeting was, but in a nutshell, it's the first time that a doctor said everything I've been thinking, and said it before I did.  I mean, this doctor got it...got everything I've been thinking...he understands my drivers and it was just so truly amazing.  At the end of the day, even if the final answer is still a no, I consider this my biggest win.  Just knowing that there is a doctor out there like this restore my faith in the medical field and my hope that this will all work out eventually.

Anyway, I'll break down the notes.

1.  Chance of FSGS -> 100% (meaning that I have it, and it's apparently not going away considering all of the drugs I've tried.
     Chance of recurrence -> 5% - 30/50% (if I have a genetic form of FSGS, which I don't know at this time), then the chance of recurrence after transplant is around 5%.  If I don't have the genetic form, the chance is between 30-50, but that's still a 60% chance that it WON'T recur...straight from the doctor's mouth ;)
2.  Have a baby (even though I'm approaching 39 w/ CKD, the dream will never die)
3.  Consequences of Nephrotic Syndrome:
     *  Edema (discomfort, breakdown of muscles)
     *  Coumidin (inherent risks with the drug)
     *  Lipids (what are the long-term effects of high lipids...cardiovascular disease??)
     *  Bone disease (a bone scan would likely indicate issues with my bone density...leeching vit D)
     *  Infection (my risk for infection is high...especially flu/pneumonia)
4.  NSAIDS (Dr. F wants me to try another drug, which is an NSAID, and will unlikely work, but has side effects)
5.  Tiredness (in my case, extreme...as well as nutritional issues)

So, what does all of this mean?  Well, it means that he went through each of these, without me prompting, and made me feel like I wasn't crazy for "wanting it all".  He seems to think I'm on the right track in pursuing this, and maybe it's just a matter of timing.  I'll need to be on dialysis for a couple of months, so it'll be important to plan for when the best time for that is...is it when Izzy's in school or during the summer?  I mean, he gave me options...HOPE!!!

So, the next step is to get a more accurate picture of my kidney function.  There's a test called an iohexol clearance test that will more accurately measure that.  Once that result is obtained, there will be more information to present to the surgeon and the rest of the transplant committee in order to plead my case.

Don't worry though...I'm not totally getting ahead of myself. I know that there are still hurdles that will get thrown in front of me, but hope goes a LONG way in giving me the patience and fortitude to see things through, and I got a BIG boost of that today, which is great because THIS is what I've been dealing with the last few days (notice my right leg at the beginning of the video):

Aug 19 2013 - swelling from Jenn Trunk on Vimeo.