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. :)

5 comments:

  1. I'm so glad for you - sounds like an awesome experience. Again, thanks for representing the rest of us so well!

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  2. I just found your blog. I was diagnosed with FSGS last month. I'm 29 and a mother of 3. I want another baby. Just one more. Do you still have the facebook group? I am so excited to find you-- I feel like its a lifeline-- someone else who isn't going to take this lying down. I have a blog: http://mykidneyshatemeblog.blogspot.com/ Lets be friends?

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  3. This is a great post! I am glad to hear that you had such a successful trip to DC. This is a condition that is not widely known and definitely could use more exposure. I myself only recently started learning about FSGS a couple of months ago. I actually recently wrote a post on FSGS last week. I had done some research on a recent clinical study where they found that nearly two-thirds of FSGS patients have an elevated level of this substance called suPAR in their blood stream. Apparently, this discovery should lead to new treatments for FSGS or even a way to prevent this condition from developing in patients who have just received a kidney transplant. I would love to hear your thoughts on the matter.

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  4. Sounds like your DC trip went really well (always helps when the weather is fine!). It can be hard to change a person's train of thought, but honestly when trying to raise awareness for a condition that is not widely known, sometimes you gotta enlighten one new person at a time. I have certainly learned something new here today, and I will be looking to write an article about FSGS for my site as well.

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  5. Hey, I just wanted to know if you had any information on clinical trials being conducted for FSGS? I know that this is not a common illness, but I have been curious to learn more about it. I am glad that you had a positive experience on your trip to Washington DC too by the way. I agree with what Stephen said, sometimes to grow awareness, you have to enlighten one new person at a time.

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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&#...