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Author Topic: time to stop lurking  (Read 2736 times)
murphy
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« on: September 14, 2010, 09:38:54 AM »
It's been about a year that I have been snooping through your lives, so firstly I apologize for that.  This site has saved me a lot of mental torture knowing I'm not alone.  About me... my nurses have renamed me murphy because of the saying anything that could go wrong...  I was diagnosed with FSGS in 2002.  I am from Iowa, 50 year old female, married, two daughters 17 and 21. I have a great neph. and my kidneys held on until August 2009. Spent two months in the torture chamber (know as in center hemo).  My husband donated to me on October 6th 2009.  1/6 match.  So this is where the story should end happily.  WRONG! I'm one of the small percent that the FSGS returned almost immediately.  Fast and furious.  After about fifty plasmapheresis treatments and many infusions of rutuximub they finallly stabilized me.  Took about seven months.  They now call me Stable Mabel.  Yeah!  My point is even after going through all this it was well worth it.  I have never posted on a forum so I'm probably making a lot of mistakes.  To all the new transplants, congrats and hang in there.  The road could be long but not impossible.
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thegrammalady
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« Reply #1 on: September 14, 2010, 09:53:03 AM »
glad you finally decided to share yourself with us. we're glad to have you.   :welcomesign;
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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For You Are Crunchy And Taste Good With Ketchup
carol1987
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« Reply #2 on: September 14, 2010, 10:35:59 AM »
 :welcomesign;
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
Poppylicious
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« Reply #3 on: September 14, 2010, 11:07:35 AM »
 :welcomesign; murphy/Stable Mabel!  Nice of you to stop lurking! 

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
MooseMom
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« Reply #4 on: September 14, 2010, 11:36:23 AM »
OK, I admit to being selfish here.  I am thrilled to hear your story because I have fsgs, too.  I may be lucky and get a transplant that works for years, but then again, I may be a murphy.  Who knows?  But I'm so glad to hear that murphies can become mabels, so thanks so much for telling us your story.  Please post often because lots of people here will be so happy to hear about your experience.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
murphy
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« Reply #5 on: September 14, 2010, 12:37:18 PM »
Thanks for your welcomes.  MM that is one the the reasons why I didn't join before.  When my outlook was bleak I didn't want to scare all the others with FSGS. FSGS is in the new kidney but my chances are better now.  My neph said if you fail I fail and thats not an option. thanks again
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cloud393
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« Reply #6 on: September 14, 2010, 02:57:10 PM »
Welcome aboard!!  Good to see things are going better for you, sounds like you've had a long road.
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May you live as long as you want and never want as long as you live.
RichardMEL
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« Reply #7 on: September 14, 2010, 06:58:36 PM »
Welcome Murphy! I'm with MM - as a FSGSer myself (though with a slow moving/chronic form of it) it is definitely good to know that at the end of all that effort you seem to have a good outcome - long may it last - and long may YOU last on IHD!

 :welcomesign;

RichardMEL, Moderator
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #8 on: September 14, 2010, 11:44:58 PM »
Welcome to our community, Mabel Murphy!!  First of all, I love when lurkers join.  That means you have had a good look at us and still are convinced that this is the place you should be.  I don't have to convince you that IHD is the best!  You are now an official de-lurker and a member of the IHD family  :grouphug; !!!  I just love your attitude.  My caring prayers are with you.




Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
peleroja
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« Reply #9 on: September 15, 2010, 09:00:44 AM »
Welcome to the group.  You're right, there is a ton of good information here and lots of friends.  Glad you finally de-lurked!
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MooseMom
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« Reply #10 on: September 15, 2010, 09:06:20 AM »
Quote from: murphy on September 14, 2010, 12:37:18 PM
Thanks for your welcomes.  MM that is one the the reasons why I didn't join before.  When my outlook was bleak I didn't want to scare all the others with FSGS. FSGS is in the new kidney but my chances are better now.  My neph said if you fail I fail and thats not an option. thanks again

You don't EVER have to worry about protecting us.  But thanks for the sentiment.

I like your neph's attitude!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
galvo
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« Reply #11 on: September 15, 2010, 10:03:51 PM »
G'day murphy and :welcomesign;.
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Galvo
RichardMEL
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« Reply #12 on: September 16, 2010, 04:06:51 AM »
yeah that's nice of you to not want to scare us, but I've learned everyone's experiences are different.. and in relation to the transplant getting FSGS straight away.. I actually asked my own neph about my own chances of this happening with a transplant. He suggested that I have the chronic (slow) form of the disease, so that even if it DOES attack a transplanted organ, the odds are that it would also go very slowly (and in that case chances are the kidney would fail for other reasons before that happened). Of course I might get unlucky and it might happen and go acute... that's just one of the risks I'm prepared to take.

Anyway thanks for being considerate of us - but this fact is this community is for everyone  - and that absolutely includes you Murphy!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
billybags
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« Reply #13 on: September 16, 2010, 06:35:23 AM »
I got a feeling there was some one out there "lurking". Welcome to the site.
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Zach
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"Still crazy after all these years."
« Reply #14 on: September 16, 2010, 09:05:35 AM »
It's real good to have you join our community!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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