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Author Topic: It is now final - my transplant is now CANCELLED!!  (Read 4591 times)
Des
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« on: May 24, 2011, 12:44:42 AM »
On my birthday yesterday I got the news that my donor has not passed all her tests. She has a very low HB and are not absorbing any iron. (even after treatment) So the whole thing is now off the board.

So back to square one......... Will I even see the age of 60?

Well that sounds a bit morbid , I am feeling better after the last 2 months of infections and bleeding cysts. Thanks for all of you sending me messages and wellwishes.

 :flower;

 
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Chris
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« Reply #1 on: May 24, 2011, 01:16:42 AM »
Sorry to hear Des, maybe something will work out. I hope your friend can find some help to absorb iron.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
RichardMEL
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« Reply #2 on: May 24, 2011, 01:57:05 AM »
I'm sorry you've had this setback, but maybe Fate has something else in store - and by that you seeing 60 with a kidney!! Try to not loose faith. It's just another bump. Hang in there.....
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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!
kristina
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« Reply #3 on: May 24, 2011, 05:04:21 AM »
 
I am so sorry for you, this set-back seems so unfair
and I do hope you have some better luck soon.

Best wishes from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
willowtreewren
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My two beautifull granddaughters

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« Reply #4 on: May 24, 2011, 05:41:39 AM »
 :grouphug; :grouphug;

Des, I know how hard the set-backs are. Carl had several donors denied. It was hard on me when I was denied and another donor felt really cheated when she was denied.

But hang in there.  :cuddle;

 :guitar:

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. :)
Des
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« Reply #5 on: May 24, 2011, 05:51:37 AM »
Thanks all!

My problem is :  I don't have donors lined up or the finances to have them tested. So this was a heavy blow. I really have been kicked,punched, and thrown around this last two months. The transplant clinic phoned me this morning to confirm that we are not doing the transplant any more. She was amazed on how calm and strong I was, little did she know ..... I was doing the "silent scream" thing.   

I really don't know how I am going to get through........
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
boswife
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us and fam easter 2013
« Reply #6 on: May 24, 2011, 06:16:55 AM »
im sorry Des  :(  Seems we need a group hug here too  :grouphug;  I surly hope something happens soon for you...
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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
jbeany
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Cattitude
« Reply #7 on: May 24, 2011, 07:48:17 AM »
 :grouphug; :grouphug; :grouphug;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
okarol
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« Reply #8 on: May 24, 2011, 12:34:56 PM »
I am so sorry Des, that's the worse news.
 :grouphug;
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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
Deanne
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« Reply #9 on: May 24, 2011, 01:21:53 PM »
I'm sorry.  :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
lmunchkin
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"There Is No Place Like Home!"
« Reply #10 on: May 24, 2011, 07:55:18 PM »
Iam so sorry Des.  Just keep on doing what youv'e been doing.  Make the best you can with what you got.  You are a strong person. And do not give up on a transplant!  I wish my husband could get one but was told he couldnt.  It was very hard for him to take, but 6yrs later, he is still going on with this disease. Never let it kick your butt!

Again, sorry that this did not work out, but maybe some one will come up with another kidney.  You deserve it!

Will pray for you, :pray;

lmunchkin      :flower;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
Jean
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« Reply #11 on: May 25, 2011, 12:43:41 AM »
Oh, Des, so sorry to hear this bad news. Trust in the Lord with all of your heart, and I know you can. He has a purpose and a reason and maybe soon you will know what it is.
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One day at a time, thats all I can do.
YLGuy
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« Reply #12 on: May 25, 2011, 01:32:37 AM »
Des, I am at a loss for words.   :grouphug;  :grouphug;  :grouphug;
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kellyt
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« Reply #13 on: May 25, 2011, 03:44:46 PM »
 :grouphug;  Sad news, Des.  Keep your chin up.  We love you and we're hear to listen. 
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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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #14 on: July 11, 2011, 03:03:06 AM »
Hey Des I just found this thread...man  this sucks. I know you are out there in IHD land still living and contributing. I am so glad that you haven't slipped away from us. Thanks for all the encouragement. Don't give up.

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Ang
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« Reply #15 on: July 12, 2011, 12:34:33 AM »
it all usually happens when you least expect it. :thumbup;
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live  life  to  the  full  and you won't  die  wondering
RichardMEL
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« Reply #16 on: July 12, 2011, 01:10:17 AM »
Quote from: Ang on July 12, 2011, 12:34:33 AM
it all usually happens when you least expect it. :thumbup;

Just like my mate yesterday. She'd been up the bush for the weekend, just got home at 12noon yesterday... 12:30 phone rings! Thank god it was when she was home and not in the middle of nowhere!!!

Hoping that call comes sooner than later!
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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!
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