Monday, December 9, 2013

I get some great letters, here is one of the best from a woman with SIADH

An e-mail I received last month:

I love your blog.  I have had SIADH for a zillion years.  I only found out what I had when I went with 5 girlfriends to a fancy spa hotel  in Tucson for a mini-vacation/ 4th of July Weekend in 1997 where the heat increased to an uncomfortable 117 degrees.

Healthcare workers in the hotel kept handing out bottles of water at each hotel exercise location with orders to “hydrate, hydrate, hydrate” and I stupidly followed their directions.  I drank myself into a 6 day coma.
The only time that sentence has been used for water, not alcohol.
Very non-traumatic for me. Very traumatic for my family. I woke up on day 6 saying, “I am STARVING!  Will someone go get me a taco?” which was very anxiety-relieving for all of them; they’d been sure I’d wake up cognitively impaired.  I wasn’t.  This “taco” sentence sounded JUST like me.  And I have continued to be not cognitively impaired despite interesting lab numbers.

My dad (who is a physician too) has SIADH as well, though his was diagnosed after mine.  I was mis-diagnosed for 9 years prior to my coma as having a “seizure disorder.”  The excellent care I received when my mental status went to heck in a handbasket was truly life-saving.  I remain a very grateful nephrology patient.  And I really do love your blog.
Thought you should know this.

She wrote back a few days later giving me permission to post her letter:

I am dying (well not literally dying) to start an SIADH group on Facebook.  We are so not connected to one another, and each of our nephrologists only have a handful of patients and of course the doctors can't introduce us to eachother because of HIPAA. 
  • For those of us that have the Syndrome without lung cancer and so on and have to live our lives thirsty
  • and our summers avoiding the sun through our sunroofs (Demeclocycline)
  • and have to, if we're female, find inventive ways to paint our nails to avoid Demeclocycline making our nailbeds ugly colors
  • and have to fear that Otsuka Pharmaceutical will convince the ONE manufacturer who makes Demeclocycline to stop making it and force us into buying Tolvaptan even though they never tested it in 3rd stage human trials on people that weren't already cognitively impaired (I know because I volunteered for every single US trial), 
Well, we NEED each other.  We need tips on nail polish, tips on drinking our fluids out of 1 ounce shot glasses, tips on rolling ice cubes around our mouths during the days our sodium is tanking, and your website is a GREAT place for us to meet up!  

You have my non-dying thanks and permission to reprint/repost any or all of my statements!

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