Wednesday, August 13, 2014

Latest trip to Mayo

Finally back home after a SUPER long day.  Since I was getting my lipids done I had to fast, which I did a pretty good job of on the drive down this morning...until I found the stash of candy in my car.  Let's just say my glucose reflected a minor little binge.

But you know what?  Screw it.  A few jawbreakers aren't going to hurt my kidneys.

It's so very humbling whenever I go there.  Even though I'm going through my own struggles, and I don't want to compare mine to anyone else's, it's easy to see how much worse it could be.  I mean, think about all of the people all over the world that go to Mayo Clinic to see if they can make a miracle.  The amount of hope yet despair that the campus can contain is nearly palpable.

I don't think I've ever seen the Hilton Building lobby that full of people waiting to get labs drawn.  The phlebotamist told me this wasn't a busy day.  I beg to differ.  Again, I reiterate that Mayo is a well-oiled machine, yet I'm always treated with the utmost patience and respect.  It doesn't ever feel like a cattle call, and for that I'm thankful.

I had a ridiculous amount of time to kill between my blood draw and actual appointment with Dr. F.  I grabbed some breakfast to cure the hungry, and then walked around aimlessly in the sunshine for a bit.  I went back to the car and worked for about 45 minutes or so (brought my work laptop but didn't want to lug it around) as I had some things I needed to get done today, and then headed up to the penthouse of the Mayo Building (I kid....it's just the top floor).


Yup....hanging out with my iPad.  I was all excited to watch the last 2 episodes of this season's Game of Thrones, when I realized that I cancelled HBO last week without watching them, and now I don't have access to the recorded episodes.  Dumb dumb dumb dumb dumb....



I read a comment on this blog today that humbled me so much.  I feel honored and wanted to say "thank you".....you were a bright spot in my day.

So, anyways....results.  Well, nothing too new here, except that it's getting worser faster.  My creatinine is up to 3.5 now (creating clearance at 22 and eGFR at 15).  Dr. F says that I need to start being careful with my potassium levels now, as my kidney function is so low now.  I'm taking 3 medicines that technically increase my potassium, so I'll start doing an electrolyte panel every 2 weeks now to self-monitor.  If my potassium starts to go up, I'll need to stop taking the meds, and eventually start diet restrictions.  It's crazy how this is a complete switch from 4 months ago where I was in the hospital because my potassium was too low.  This ESRD stuff is such a HUGE balancing act!!!

My iron was low again, so I headed over to the infusion center for a boost and on my way I caught the end of this performance:

<iframe src="//player.vimeo.com/video/103390250" width="500" height="889" frameborder="0" webkitallowfullscreen mozallowfullscreen allowfullscreen></iframe> <p><a href="http://vimeo.com/103390250">IMG 1560</a> from <a href="http://vimeo.com/user1496827">Jenn Trunk</a> on <a href="https://vimeo.com">Vimeo</a>.</p>

I posted on Facebook "Expert advice and entertainment too!".  I LOVE it when I get to see something like this.  Some kid from somewhere walks up to a piano and knocks out THAT performance.  Inspiring.

While I was waiting for my iron to be delivered to the infusion center, a young volunteer walked by and asked if I wanted a hand massage.  Score!!!!  She did a lovely job, and was so personable!  What a nice way to have to get a shot (and that particular shot HURTS!!!)

Guess that's all that I have to report for tonight.  We're off to the U on Friday for Joacim's donor evaluation, and I have my follow-up at the U on Monday.  Such attention being paid to the defective beans this week!

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&#...