I thought I'd post something real quick as I'm sitting here, enjoying 5 minutes of quiet over coffee and french toast:
The horror for that nurse and patient
http://www.toledoblade.com/medical/2012/08/24/UTMC-nurse-tossed-out-kidney-ruined-it.html
And the follow-up from UNOS
http://www.toledoblade.com/Medical/2012/08/24/Error-won-t-give-Toledoan-a-break.html
Be careful out there....our little beans are worth it
http://www.nephrologynews.com/clinical/article/west-nile-virus-might-pose-kidney-disease-threat
This is a shame...
http://well.blogs.nytimes.com/2012/06/11/the-reward-for-donating-a-kidney-no-insurance/
Caleb has FSGS...
http://www.insideindianabusiness.com/newsitem.asp?ID=54155
Artificial kidney on the horizon!!
http://abclocal.go.com/kgo/story?section=news%2Fhealth&id=8706169
Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts
Saturday, August 25, 2012
Tuesday, June 5, 2012
Interesting information for your Monday : FSGS Sucks
Here's a couple of things I ran across while perusing the internets lately....
You have to watch this video. Powerful.
And an article in The Atlantic magazine...
And a story about the oldest living kidney donor
You have to watch this video. Powerful.
And an article in The Atlantic magazine...
And a story about the oldest living kidney donor
Thursday, March 8, 2012
World Kidney Day : FSGS Sucks
I'm sitting here writing this blog post from the 4th floor of the Russel Senate Office Building. I have a few minutes before my 2:00appointment with Sen. Dan Coates' legislative aid, so I thought I'd take a few minutes to collect my thoughts.
This day mattered. It mattered to me, and even though the timing was less than ideal, I want to thank my husband for understanding how important it was to me to be here and advocate for me and others like me.
I've learned so much in the last two days. Not only about kidney advocacy, but also the political process. DC is a stunningly beautiful city (doesnt hurt that its nearly 70 degrees and sunny :) and I look forward to coming back here one day with Joacim and Izzy.
Whether or not we change anyone's mind today, at least I know I educated one person about what it's like living with CKD. It's so hard to read people here in this big political machine....watching all of the moving parts has been fascinating, and the number of navy blue suits is mind-boggling! I even chatted with a Capitol Police officer while I was standing in front of it, trying not to blow away :)
Okay...few hours later now. I'm sitting on the plane, ready to fly home, and I can't begin to describe how tired I am, or how swollen I am. But it was worth it. The kidney community is small but incredibly welcoming...we're all have a story to tell. I shared a cab to the airport with 2 kidney donors...one was an altruistic donor and the other was donating her kidney to her dad 7 DAYS FROM TODAY! How amazing is that? I also met another FSGS sufferer...she's on her 2nd transplant right now and is doing really well. I saw a fistula for the first time, and it wasn't nearly as scary as the ones I'd seen on You Tube (granted, she had it done while she was in France and they did it cosmetically on the underside of her forearm). These people I'll stay in contact with, and I can't wait to share some pictures from the day. :)
This day mattered. It mattered to me, and even though the timing was less than ideal, I want to thank my husband for understanding how important it was to me to be here and advocate for me and others like me.
I've learned so much in the last two days. Not only about kidney advocacy, but also the political process. DC is a stunningly beautiful city (doesnt hurt that its nearly 70 degrees and sunny :) and I look forward to coming back here one day with Joacim and Izzy.
Whether or not we change anyone's mind today, at least I know I educated one person about what it's like living with CKD. It's so hard to read people here in this big political machine....watching all of the moving parts has been fascinating, and the number of navy blue suits is mind-boggling! I even chatted with a Capitol Police officer while I was standing in front of it, trying not to blow away :)
Okay...few hours later now. I'm sitting on the plane, ready to fly home, and I can't begin to describe how tired I am, or how swollen I am. But it was worth it. The kidney community is small but incredibly welcoming...we're all have a story to tell. I shared a cab to the airport with 2 kidney donors...one was an altruistic donor and the other was donating her kidney to her dad 7 DAYS FROM TODAY! How amazing is that? I also met another FSGS sufferer...she's on her 2nd transplant right now and is doing really well. I saw a fistula for the first time, and it wasn't nearly as scary as the ones I'd seen on You Tube (granted, she had it done while she was in France and they did it cosmetically on the underside of her forearm). These people I'll stay in contact with, and I can't wait to share some pictures from the day. :)
Location:World Kidney Day
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