Wednesday, December 19, 2012

Seriously sucking : FSGS Sucks

When I woke up this morning, I didn't think I'd end the day by researching the link between Prograf and creatinine, how to prepare for dialysis and where's the nearest center, yet that's what's happened today.

Around 6:00pm, my doctor at Mayo called with my lab results, and seemed a bit freaked out.  Here's why:  

My creatinine has jumped from 1.8 to 2.8 in two months.  That's a BIG jump.  This is a bad jump. 


A creatinine of 2.8 lowers my kidney function to an eGFR of 19, which puts me solidly in stage 4 CKD.  According to what I read, at an eGFR of 20 you can get put on "THE LIST".  Yes people, I'm talking about the UNOS Transplant list.


I'm clearly peeing less and less....another indicator of decreased kidney function.  Did you know that lots of dialysis patients don't pee?  Won't that just be WEIRD?  Okay, the ONLY upside is no need to use those ultra-creepy restrooms at gas stations :)

  

My protein loss hasn't changed much...still hovering around 12000 mgrams.  A normal person averages less than 150.

And clearly, based off of this following graph, I'm having some electrolyte issues.


The funny thing is, I feel pretty OK.  I think I got a definite boost from the albumin infusions (still minimal swelling, and I've spent A LOT of time in a car this week).

So the plan is to stop taking Prograf/tacrolimus (which is great because it gives me the shakes) and bactrim (which is also great because it causes thrush) immediately, and then do another blood creatinine test on Monday when I get my INR checked.

I seriously don't know what to think.  I think I'm in shock.  I know I'm happy for happy pills, 'cause if it weren't for them, I fear I'd be a babbling mess.  This is where it's good to be numb.

Wish me luck folks, this journey's about to get bumpy.

Tuesday, December 18, 2012

Nephcure needs our help! : FSGS Sucks

If you have FSGS, I'd like you to go to this link and read it.  And then I'd like you to complete the survey.  This is how information goes to researchers and drug companies in order to determine if it's viable to pursue treatment options.  If they don't know who we are, they aren't going to work on what we need.  So I'm IMPLORING you to spend the 10-15 minutes....thank you :)


http://www.nephcure.org/find500

Monday, December 17, 2012

Warfarin and Kidney Disease : FSGS Sucks

Just another reason in a litany of many that FSGS sucks.

http://www.sciencedaily.com/releases/2009/02/090218181806.htm

A friend of mine sent me this this morning, and it's VERY interesting.  I just started warfarin therapy a little more than a month ago, and I'm VERY sensitive to dosing and eating....we just can't seem to stabilize it.  This study is helpful and is something I'll bring to my doctor visit.

NKF Awards Dinner

Because I was one of the the top individual fundraisers for this year's walk, I was fortunate enough to be invited to this year's awards dinner.  It was great to see people again, and to meet some new ones.

I met a gentleman who is also part of the Peers program (which is the mentoring strategy), and had just received his transplant in August.  He looked fantastic, and felt amazing, so it was great to chat with him for a bit.  I also met a lovely couple who didn't have a personal affiliation with NKF, but they were volunteers instead, which is GREAT to meet people like this who do this sheerly out of the kindness of their hearts.  They even live close to me...only a couple of miles away.


Here's the certificate and the medal that I received.  It's wonderful to be recognized for my efforts, so thanks to all of you for donating.

This coming year, I want to do more....raise more money.  I'm hoping to enlist my friends to cocme up with some great and creative fundraising ideas.  So pass along any ideas that you've got.  Thanks again!

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&#...