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....
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I&#...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there... -
I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
Again, so glad that you have at least gotten TO the list! Such a relief for all of you!
ReplyDeleteI am sure I've told you about a book I read about not *looking* sick. It really changed the way I look at EVERYONE - idiots who ignore pedestrians in crosswalks, people walking slowly when I'm in a rush... everyone. I know that I have my slow days, and I want people to be patient with me, so I started doing the same for others.
Here's hoping you got that nap. :)
Hi again Jenn,
ReplyDeleteMy name is Lynnda and I am the anonymous person who asked you for an update, so thank you very much for seeing my request and acting on it.
I will be very keen to know if and when you have tests to measure whether you have had any change in your proteinuria. As I said in my other message, we are considering whether my husband should try Abatacept for his FSGS but his nephrologist would rather his biopsy cells be tested for CD80 (or B7-1 immunostaining) first, to determine whether he is in the sub-group of primary, idiopathic FSGS patients who would be most likely to respond. The problem is that so far we don't know where or how the heck we can get the test done. The whole thing is just one big question mark at the moment, so anything you can share will be very much appreciated. P.S. I was the one who sent you a friend request on FB. If you don't want to accept, I understand.