Tuesday, July 21, 2015

Kidney by Halloween!!!!

I had a very early blood draw at Mayo this morning (7:30am), so I had to leave the house at 5:30am, which means I went to bed at 7:30pm last night ;)  Even arriving at 7:20am, I ran into a line getting into the parking garage!


After my blood draw, I headed straight to Mac's Restaurant to get some sustenance (i.e. coffee and omelet).  After breakfast, I sat outside for awhile, but I was so sleepy, so headed up to my familiar spot on the 19th floor of the Mayo building to hang out and wait for Joacim to meet me.  He drove separately because Izzy had an orthodontic appointment this morning to get her spacer fitted, and hell hath no fury like that of the ortho clinic when you try to reschedule!

When I got upstairs, I first sat in my normal spot, but the sun was so intense and hot that I had to move.  On one end of the 19th floor of the Mayo building is Nephrology, and the other end is the Cancer research center (I thin).  Anyway, it's pretty quiet over there usually, but today was a bit of an exception, as I got to watch the window washers.

I'm pretty sure it's mirrored glass and they could't see me, but I still felt so guilty sticking the phone in their face that I abandoned those pictures :)  I hung out up here, answered some emails, watched some Hulu and HBO (thanks Rebecca!) and waited.  Joacim made it to Rochester around noon, and we headed over to Mac's (again...it's THAT good) and shared a gyros platter.  I sent a picture to Adam to make him a bit jealous of all the fun I was having ;)

We then headed over to the transplant center and waited.  I took this picture because I think it's funny that Joacim and I inadvertently dress like each other sometimes.  We both had on white v-neck t-shirts, dark gray/black pants, and dark gray/black shoes.  TWINSIES!!!  Funny that it happens once, but this seems to be a frequent occurrence ;)

I started to get SO nervous before my appointment, just imagining all of the bad news I was going to get.  But you know what?  It was GREAT news!!!!!

This is the drawing that the nephrologist made, and I took a picture to help me remember everything. He did such an incredible job of explaining the game plan, and made sure that Joacim and I understood everything.  He was happy that I had done some research and came with questions.  And he had a hilarous sense of humor!  I feel like I'm in great hands!!

So, my albumin has come up a bit more (2.5) and the trend is definitely improving.  We talked about how PD is not ideal for someone with low albumin, but he doesn't want to change anything in regards to that.  There was some initial talk about clipping my ureters but he decided that wouldn't be necessary after reviewing my labs!!!!  We can go forward with Rituximab....soon!!  He's going to work with my transplant coordinator to ensure insurance coverage (no, I'm still not on Medicare), but it shouldn't be a problem.

I'll have my B-cell level tested prior to the first infusion (same day) to measure effectiveness of the Rituximab.  The first infusion could take up to 6 hours because they want to go fairly slow to prevent any sort of a reaction. There's a bolus of steroids involved in this, which sucks, but not enough for me to complain anymore about it :)  Then we'll wait 2 weeks, measure my b-cell level again, and do the 2nd infusion. Then we'll have 8-10 weeks (maybe a little longer) to ensure all of the b-cells are gone and then TRANSPLANT!!!  I'll probably do 4 plasmapheresis treatments prior to transplant (the 4 days prior) just to be super-sure I'm cleaned out.

These are the details as I know them today.  I'm not sure when the first infusion will be, but he said it could be as soon as this Friday...it will depend on scheduling and insurance, but things are looking really good!

I was SO excited to call Adam with the great news, and some semblance of a plan!  This is freaking GREAT NEWS everyone!!!!!

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&#...