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TwistedKitten
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I refuse to let the kidney disease define who I am
« on: October 08, 2008, 02:09:17 PM »
:waving;

So obviously I'm new here, lol.

Anyways, I'm Sherri and I'm 23. I have ESRD and have been on hemo-dialysis for almost 4 years now. 

When I was 2 years old, my brother got sick and was put on dialysis. After some testing the discovered that he had Alports Syndrome. As it's genetic they tested me as well and discovered I had it as well, as well as my mother. For the next 9 years he went between PD and Hemo dialysis. He had a couple transplants that both failed for one reason or another. On September 8th, 1996 he passed away. I was only 11.

In 1999 my mom also had to go on dialysis. She chose PD, and the usual stuff happened. A few infections over the 8 years she was on PD, and the last infection she had was too much for her body to handle and she died on August 5th, 2007, at the age of 48. A week after my 23rd birthday. 11 years after my brother died.

As for me, being diagnosed with Alports Syndrome at age 2 I spent years being monitored and tested. I knew dialysis was an eventuality, I just didn't expect it to be so soon.  I was 19, the same age as my brother when he died.

In May I had surgery to create a fistula, which clotted off by the time I got up to recovery. So I had to go for tests to see why I am hypercoaguable. Turns out I acquired Antiphospholipid Antibody Syndrome. So now that that's all figured out, and I'm on thinners we're gonna try to do another fistula. Hopefully soon as my Perm Cath isn't working very well and I've lost track of how many I've had in 4 years lol. I'm tired of the surgeries. So here's hopin' and prayin' it works!!! :2thumbsup;
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~I'm staring out into the night Trying to hide the pain~ Home by Chris Daughtry

~Life has it's ups and downs, its twists and turns. It's how we look at it and turn those things around, now that's the key thing~ Kevin Sharp

~Life isn't about the amount of breaths you take, but the moments that take your breath away~

~Think of each day as a special gift, and unwrap it gratefully~

~My meow is just too unorthodox for these kittens~
monrein
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Might as well smile
« Reply #1 on: October 08, 2008, 02:16:32 PM »
So glad you found us TwistedK.  All together we have a ton of experience and information and I only wish that YOU and your family did not have as much experience with ESRD as you obviously do. 
I'm happy to hear they figured out the clotting situation and I hope your next fistula surgery goes 100% smoothly.
 :welcomesign;  Post often, we have several people around and about your age.  The rest of us can't really believe we're as old as we are anyway so you might not notice our age in cyberspace. lol.
« Last Edit: October 10, 2008, 05:57:40 AM by monrein » Logged
Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
peleroja
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I have 16 hats, all the same style!
« Reply #2 on: October 08, 2008, 02:26:52 PM »
I am so sorry to hear about all the problems in your family.  Makes me feel badly cuz I've never had a bit of trouble with PD for 5 years.  You've got a lot of sympathetic ears here.  Please come back and post often and keep us up to date.  Are you gonna try for a transplant?
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cookie2008
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« Reply #3 on: October 08, 2008, 02:29:57 PM »
 :welcomesign;
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
Joe Paul
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« Reply #4 on: October 08, 2008, 02:54:37 PM »
Welcome TK, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
willieandwinnie
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« Reply #5 on: October 08, 2008, 02:59:41 PM »
:welcomesign; Sherri. I'm so sorry about your Mom and brother. I'm glad you found us, we are a great group and we are happy to have you. Post often and I'm sure we can learn a thing or two from you.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
G-Ma
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« Reply #6 on: October 08, 2008, 04:08:36 PM »
 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
boxman55
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« Reply #7 on: October 08, 2008, 04:54:38 PM »
Ah man TwistedK, I am so sorry to hear about your brother and Mom. I hope the fistula surgery works out for you. Hope you can find the time to post we want to hear from you. Welcome to IHD


Boxman, Moderator
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
Romona
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« Reply #8 on: October 09, 2008, 03:56:56 AM »
 :welcomesign; Sherri, sorry about your Mom and brother.  :grouphug;
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devon
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« Reply #9 on: October 09, 2008, 07:28:06 AM »
Geeze Twisted!  You've been through so much in a short time!  I hope we can provide you a place to come for comfort and peace.

-Devon
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TynyWonder
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Calvin
« Reply #10 on: October 09, 2008, 10:19:52 AM »
:welcomesign; aboard TwistedKitten!   I am so sorry for your losses but please continue to posts, posts, posts and let us know how you are doing!    :grouphug;
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
RichardMEL
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« Reply #11 on: October 09, 2008, 11:45:27 PM »
G'day Twisted.... I like kittens so hope you're not THAt twisted... though after all you've been through with your brother and mother... that's really difficult for anyone to bear, let alone a child.

Really hoping your fistula/blood issues can be sorted because it IS the best form of access....

Welcome aboard!!

 :grouphug;
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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!
circleNthedrain
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« Reply #12 on: October 10, 2008, 12:41:07 AM »
Welcome TwistedKitten!  Good luck with the fistula surgery.  Post often!
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1979 Diagnosed with kidney failure
1979 Right arm fistula
1979 Start hemodialysis
1980 CAPD catheter
1980 Start CAPD
1989 Cadaveric kidney transplant
1995 2nd cadaveric  kidney transplant
2007 Start hemodialysis
2010 Still drawin' wind
twirl
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« Reply #13 on: October 10, 2008, 02:52:37 AM »
love your name and your hair :thumbup;
wish this was not a place you needed to come to
but we will help
and we care
and we understand
you are part of the IHD family
welcome :cheer:
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Razman
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« Reply #14 on: October 10, 2008, 05:24:13 AM »
I'm glad that you joined " the team " and I hope that you stay in touch.    :canadaflag;
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Ang
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« Reply #15 on: October 10, 2008, 03:21:31 PM »
 :welcomesign;  TK
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live  life  to  the  full  and you won't  die  wondering
kimcanada
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WWW
« Reply #16 on: October 10, 2008, 03:26:02 PM »
 :welcomesign; you sound amazing!!! :cuddle;
« Last Edit: October 14, 2008, 04:24:03 AM by kimcanada » Logged
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mcjane
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« Reply #17 on: October 13, 2008, 08:46:24 PM »
Your courage amazes me.

I'm glad you found IHD.

Jane
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paris
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« Reply #18 on: October 16, 2008, 10:52:33 AM »
 :welcomesign;   We are so glad you joined us.  Your story is amazing.  I am sitting her with tears streaming down my face.  It is incredible what you have had to deal with in such a short time.  I am so sorry for the lose of your brother and your Mother.   You seem like a survivor and a strong woman.  I hope they can get the fistula/blood clotting figured out soon.  Please post often.  I think there is much you can share with us.   And we are here, anytime you need a shoulder to lean on.        Your Mother would be very proud of the amazing woman you are. :cuddle; :cuddle;




Paris,moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #19 on: October 17, 2008, 08:36:00 PM »
Welcome to our community, Sherri!  I agree with Paris.  You are obviously a very strong young woman.  Please know that we are here with you all the way.  So sorry about your losses - I too lost a brother after 10 years on dialysis.  But we are still here for a purpose.  Please take advantage of all this site has to offer.  Think of us as family  :grouphug;  That is the way we are here.
Looking forward to hearing lots from 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;
kellyt
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« Reply #20 on: October 17, 2008, 08:42:50 PM »
 :waving;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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