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Author Topic: Delays, obstacles and heartbreak  (Read 2857 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: September 06, 2011, 11:52:23 AM »
This was in Jenna's guest book on her caringbridge page. This mom and I discussed bladder and transplant issues for the last year - I know she was doing all she could. Life is so unpredictable, so fleeting. Her note is my fear.

Hi, you may remember me as I have signed your guestbook in the past and spoke about my 18 year old son, David. You may recall that David was awaiting a transplant and I was his donor and his mom. David was waiting for a urodynamics test and as a result his transplant was postponed until a few months later. He then became anemic because he had been taken off his dose of aranesp and  just before his new date he was taken off PD and put on hemo and his transplant was once again postponed. David and I received a new date of June 8th but sadly on the day that he was to receive my kidney he suffered a series of mini strokes, a massive stroke and ultimately died of hypertensive encephalopathy. I am sorry to put this bad news on your guestbook Jenna and Karol but I wanted you to know as Karol you were so kind as to respond to my post in the past.

Jenna, David and I used to read your journal together and look at your photos and we were so hopeful for you, and you also gave us so much hope. I wish you all the health you deserve and I know that your mom will advocate on your behalf and I hope you and your family stay well.

With much love and hope for you,

M
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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
MooseMom
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« Reply #1 on: September 06, 2011, 12:01:08 PM »
That's just soul-destroying.   :'(
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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."
jeannea
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« Reply #2 on: September 06, 2011, 12:18:58 PM »
That's so sad. That poor family.
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*kana*
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« Reply #3 on: September 06, 2011, 04:40:18 PM »
That just breaks my heart and makes me wonder why some must go through so much heartache. 
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
del
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del and willowtreewren meet
« Reply #4 on: September 06, 2011, 04:51:24 PM »
So sad.  :'(
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Don't take your organs to heaven.  Heaven knows we need them here.
Lillupie
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wedding 12-10-11

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« Reply #5 on: September 06, 2011, 04:54:36 PM »
Shocked. I didnt think I would read about about another young person dying.
 His mom was going to donate a kidney to him too!

Ugh! So not fair
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
willowtreewren
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My two beautifull granddaughters

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« Reply #6 on: September 06, 2011, 05:22:23 PM »
I can not even begin to imagine the heartache this mom must be going through. And above that, she took the time to share her story with you.

What a sad, sad post.

 :cuddle;

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. :)
jbeany
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« Reply #7 on: September 06, 2011, 05:35:24 PM »
Can we post that on every transplant coordinator's desk?  Get your act together, fools - time is essential!
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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.
AguynamedKim
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« Reply #8 on: September 06, 2011, 06:05:47 PM »
That just breaks my heart.
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boswife
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us and fam easter 2013
« Reply #9 on: September 06, 2011, 06:44:35 PM »
exactly Kim, breaks my heart..  It hurts  :'(
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #10 on: September 06, 2011, 09:16:46 PM »
Quote from: jbeany on September 06, 2011, 05:35:24 PM
Can we post that on every transplant coordinator's desk?  Get your act together, fools - time is essential!

Amen!
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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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #11 on: September 07, 2011, 11:48:46 AM »
Quote from: okarol on September 06, 2011, 09:16:46 PM
Quote from: jbeany on September 06, 2011, 05:35:24 PM
Can we post that on every transplant coordinator's desk?  Get your act together, fools - time is essential!

Amen!

I totally agree and was thinking the same thing! Time is of the essence!!!

I hope this mom can find peace and comfort!!

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?
Iwannabean
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« Reply #12 on: September 09, 2011, 09:51:35 AM »
I am so sorry for the family.  I lost a son 7 years ago and he was only 24.  Whenever a parent loses a child, it is one of lifes biggest challenges. My prayers are with you and your family

Steve
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