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Author Topic: I got a call - 10 minutes ago  (Read 19987 times)
MaryD
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« Reply #50 on: December 11, 2012, 04:40:19 PM »
Fingers are crossed, Uros!       :flower;
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Sue
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« Reply #51 on: December 12, 2012, 02:44:31 AM »
Good Luck Uros, Come on Chuck !! :boxing;
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
GoingThere
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« Reply #52 on: December 12, 2012, 04:03:26 AM »
My dear friends,



My body completely rejected the kidney. The kidney goes out next week.

Devastated.
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1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
MaryD
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« Reply #53 on: December 12, 2012, 04:26:56 AM »
Uros - I'm so sorry to hear your news.        :grouphug;
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Joe
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« Reply #54 on: December 12, 2012, 05:11:41 AM »
So sorry to hear that. Hopefully next time will be more successful.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
cariad
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What's past is prologue
« Reply #55 on: December 12, 2012, 06:18:05 AM »
Oh, Uros, not the outcome any of us wanted for you.  :'(

Take care of yourself, and I do so hope you get a second chance soon.  :grouphug;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
boswife
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us and fam easter 2013
« Reply #56 on: December 12, 2012, 06:59:14 AM »
very sorry for this news.  We all had so much hope.  Sending love and best wishes for another chance very soon...  :grouphug;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
willowtreewren
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My two beautifull granddaughters

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« Reply #57 on: December 12, 2012, 08:06:22 AM »
I am so very sorry.

Did they ever figure out WHY so they can address that next time?

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12
« Reply #58 on: December 12, 2012, 09:53:47 AM »
So sorry....
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billybags
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« Reply #59 on: December 12, 2012, 10:15:25 AM »
GoingThere, I am so very sorry this has happened to you.  You poor boy it must be devastating for you, to wait for so long and then this to happen. .Have they said why?  Hope you don't have to wait to long for another chance.
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GoingThere
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« Reply #60 on: December 12, 2012, 11:59:26 AM »
They are suprised becAuse the midney was a good match. They say I have a very strong immune system. But they reclassified my rejecton from severe to moderate IIa. They also suspect I have humoral rejection. The plan is to use plasmapheresis and medrol pulses. Also OKT3 is in game, but this is suppose to be very toxic.

I will try a little bit more but not for any cost. I had a good life on dialysis.

Uros
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1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
Deanne
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« Reply #61 on: December 12, 2012, 12:41:13 PM »
I'm sorry this happened. I think I would be devistated. You sound like you're coping better than anyone could expect.  :grouphug;
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #62 on: December 12, 2012, 02:58:42 PM »
I am really saddened to hear this news.  Like Deanne said, you seem to be coping pretty well, but then again, we're communicating by mere computer.  Your face may tell a very different story.  I just hope that physically you are OK and that you will get a second chance if you want it.

Good luck with the surgery to remove the kidney.  We are all thinking of you and are here to help in any way we can.
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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."
natnnnat
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« Reply #63 on: December 12, 2012, 04:18:51 PM »
Darn it.  That sucks.   :grouphug;  At least you were alright on dialysis, and if all those photos of you riding your bike were anything to go by, then yes you weren't too bad on the big D.  Though if you are like other human beings, your positive approach to going back to dialysis probably comes and goes.  You can't ever predict how these things are going to turn out, and maybe dialysis is a better option for you than really harsh attempts to keep the kidney?  The main thing is that you keep your pragmatism and take things as they come.  We are all here for you dear Uros.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MaryJoe
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« Reply #64 on: December 12, 2012, 04:32:03 PM »
I really wish things had worked out better for you.  Please keep us updated.  Still hoping the treatment will work.
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
boswife
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us and fam easter 2013
« Reply #65 on: December 12, 2012, 08:28:24 PM »
many hugs to you and prayers.  Hang in there and bless that attitude of yours.. I wish a whole lot of good to come to you  :grouphug;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
cdwbrooklyn
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Positive Thoughts equal Positive Energy
« Reply #66 on: December 13, 2012, 11:58:06 AM »
Sorry things didn't work out for you.  At least you are on top of the list so another should be coming to you soon.  Hang in there for the next time you will shine.   8)
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #67 on: December 14, 2012, 12:33:19 AM »
 :( that's awful, so very sorry.  :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
cassandra
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When all else fails run in circles, shout loudly
« Reply #68 on: December 14, 2012, 02:49:37 AM »
Oh dear GoingThere, so sorry to hear your news, and wishing you all the best, and strength with those treatments. It could work, I hope of course it works.

good luck, and lots of love Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
RichardMEL
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« Reply #69 on: December 17, 2012, 10:36:29 PM »
Oh my goodness GT - I am quite heartbroken for you at this situation... i can't even begin to imagine how you've felt over this rollercoaster and the result.

my thoughts are  with you at this difficult time. I know you are strong and a fighter - you will bounce back but right now, this is so very tough.
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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!
kit78
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« Reply #70 on: December 27, 2012, 12:05:43 PM »
I am so sorry.  I pray you will get another kidney and it will take.  Hang in there. Love & light!
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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
Roxy
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« Reply #71 on: December 27, 2012, 07:57:03 PM »
I'm so sorry  :grouphug;  :grouphug;
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CebuShan
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« Reply #72 on: December 28, 2012, 08:42:54 AM »
So sorry that Chuck didn't work out   :grouphug; 
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
GoingThere
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« Reply #73 on: December 29, 2012, 06:38:58 AM »
Well, finally some good news. After 6 sessions of PE+ivig, 2xATG, Chuck kicked in. Currently my creatinine level is 2.41 and I'm off dialysis for 14 days.
I will still get 3xPE and maybe 1 ATG, though ATG probably won't happen cause I have a hard response on this drug.  2 pulses of ATG lasted a week and my immune system didn't exists. I hope I won't have bad consequences in the future.

GT
Logged
1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
cariad
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What's past is prologue
« Reply #74 on: December 29, 2012, 06:45:31 AM »
This sounds *much* more encouraging, Uros! Long may it continue!  :yahoo; :yahoo; :yahoo;

Best wishes and highest hopes that Chuck keeps doing his job and that you can put this whole ordeal behind you soon!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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