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Author Topic: Depressed - Anniversary  (Read 2400 times)
jeannea
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« on: March 17, 2011, 02:18:35 PM »
Today is my transplant anniversary. 13 years. It used to be an occasion for a party but now I'm on PD and it's a little depressing. I'm sure there are others here post transplant who know how I feel. I'm back on the list but it will be years...
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carol1987
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« Reply #1 on: March 17, 2011, 03:48:44 PM »
 :cuddle; so sorry.....
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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...)
MooseMom
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« Reply #2 on: March 17, 2011, 03:52:27 PM »
Oh gosh...I am so sorry to hear that.  There must be few things more demoralizing than to have enjoyed life without dialysis and then have to go back on it.  I don't even want to imagine.  I really hope you get another chance very soon.  Life is really hard on the list. :cuddle;
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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."
noahvale
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« Reply #3 on: March 17, 2011, 03:57:01 PM »
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« Last Edit: September 16, 2015, 05:39:46 AM by noahvale » Logged
MooseMom
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« Reply #4 on: March 17, 2011, 04:18:44 PM »
@Noahvale and jeannea, do you get extra "points" on the list for having already had a tranplant?  Wouldn't that mean you might get further up the list quicker?  I sure hope so!
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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."
noahvale
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« Reply #5 on: March 17, 2011, 04:31:42 PM »
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« Last Edit: September 16, 2015, 05:40:08 AM by noahvale » Logged
willowtreewren
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My two beautifull granddaughters

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« Reply #6 on: March 17, 2011, 04:34:35 PM »
Hugs to both of you.  :grouphug;
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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. :)
jeannea
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« Reply #7 on: March 17, 2011, 05:37:40 PM »
Thanks everyone for the support. Noahvale - at least I didn't start dialysis on my anniversary.

I don't know about the points. I'll take what I can get. My antibodies are at 97% because of the previous transplant and 4 units of blood when I was bleeding out. I hope to get treatments soon to bring that level down.
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billmoria
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Living life to my max
« Reply #8 on: March 17, 2011, 07:29:42 PM »
I never remember the dates of bad things. You got 13 good years - hope you get more.     :2thumbsup;
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WMoriarty
noahvale
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« Reply #9 on: March 17, 2011, 07:44:31 PM »
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« Last Edit: September 16, 2015, 05:38:24 AM by noahvale » Logged
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #10 on: March 17, 2011, 09:36:20 PM »
Sorry to hear this. My daughter's surgeon was discussing the new idea of removing the transplanted kidney that no longer works - in order to bring down the PRA. Once the foreign tissue is gone, some of the antibodies go down. Has anyone heard of this?
There's also desensitization treatments that have helped some of our members to get transplants. Not all centers do it, but it's worth asking about. My friend just got her transplant from her non-matching donor on Feb 4 - it's her 4th transplant and her PRA was 100%!
Even having a non-matching, but willing, living donor - some patients have gotten lucky in paired swaps or chains, where your tissue is put into the system and compared to donors at over 30 participating hospitals. They've already matched a few patients who were over 97% PRA.
I hope something works out for you both.  :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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #11 on: March 17, 2011, 09:50:27 PM »
sorry to hear this I felt the same way too when my kidneyversary came up in December...hang tough!

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?
jeannea
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« Reply #12 on: March 17, 2011, 10:12:01 PM »
I don't have a protocol yet for the antibodies. I was waiting for some insurance stuff to get worked out. But they could do IV Ig or plasmapharesis. I'm with Hershey Med Center in PA. They refused to make me any promises or plans til I had medicare all in place.
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*kana*
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« Reply #13 on: March 20, 2011, 06:17:52 AM »
This is kind of why I don't want a transplant.  I can't imagine going through renal failure twice.  The emotions the sickness the stress......ugh! 

I also am one that never remembers bad dates.  You were lucky to get an extra 13 years and I wish you many more. 
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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
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