Tuesday, March 6, 2012

It's been awhile / Advocacy Day / Celebrity Apprentice : FSGS Sucks

Can't believe it was the middle of February when I posted the last time.  There was just no way I could keep up with everything, what with the relocation and all.  We're up here in Minnesota now, not completely settled yet, but closer than we were.

What I AM excited about is my trip to Washington DC today for the National Kidney Foundation's Advocacy Day!!!  Sadly, I won't arrive until late tonight because there's a group of other advocates meeting for dinner and a chat.  No worries...I'll meet them all on Wednesday.  I can't wait to share my learnings and adventures with everyone who reads this blog.

Also, I wanted to share something else with you.  Real Housewife of New Jersey star, Teresa Giudice, is helping us bring some MUCH needed attention to FSGS and Nephrotic Syndrome through her appearance on this season's "The Celebrity Apprentice".  Please watch the following PSA...the kids are so cute!!!



  1. You're such a better advocate for me than I am! Awesome for you, eek for me... :)

  2. I am a FSGS patient. I was diagnosed when I was about 10yrs old I am 39 yrs now and just last June I received a Kidney Transplant. I was very fortunate that my brother was able to donate a kidney. I suffered with swelling,blood pressure, crapms all over my body,
    severe fatigue and with this horrible way of feeling I still managed to raise my kids. My daughter is 19 yrs old and my son is 12 and they were my drive to keep me going through the years. FSGS is very serious. I learned the hard way. I was on dialysis ofor about 2 and a 1/2 yrs and that was the worse time of m life, I hated every minute of the treatment, but that was keeping me alive, so I had no other choice but to keep on going with it until they called me from the waiting list. Then my brother decided to donate and share his kidney with me.


Fistula ultrasound and all the worries, again :(

It's been a little over a  month since my fistula surgery, and I had my ultrasound this past Wednesday. I went into this thing thinking ...