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Author Topic: Kidney vs. lottery  (Read 2386 times)
MommyChick
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Me & my precious Miracle !!!
« on: July 31, 2012, 05:48:51 PM »
Ok... So Friday I was very excited to find out that I am officially on the "swap" paired donation list! It gave me more hope after waiting 7 yrs on the regular waiting list. I keep being told I'm at the top of the list yet not a single call so far. So the "swap program" seemed to be the way to find a match due to my situation/antibodies. Then yesterday as I'm on dialysis my coordinator calls to let me know that my antibodies were tested & there the kind that can't be decreased!
My antibodies are at 99% & none decreasing, talk about being bummed!! I pretty much will probably have 1 chance to get a 2nd kidney if I get lucky enough!
So I'm guessing I have better luck at winning the lottery  ???  haha Guess I should start playing.
On the other hand... I was told I only had 1% chance to have my son & hes a healthy little boy! So I guess anything can happen, it just gets frustrating at times!

Staying positive though  :pray;
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
Cordelia
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« Reply #1 on: July 31, 2012, 06:13:52 PM »
I know how you feel. I don't have the worst antibodies and I don't have the 'best' so my coordinator tells me. I have a live donor and I still can't get a transplant through the paired exchange program myself.  My husband and I didn't make the cut in June when they did a matching run, so now I have to wait until October for the next matching run to see if there will be a match.

Sounds like you're on the top of the list though, that's a good sign. Fingers and toes crossed something happens soon for you!

It's very frustrating, I know, but I just keep plugging on and try to stay positive.
« Last Edit: July 31, 2012, 06:16:00 PM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
lmunchkin
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"There Is No Place Like Home!"
« Reply #2 on: July 31, 2012, 06:20:52 PM »
Marna, you and that precious one (he's Adorable) in the picture deserve the best you can get.  You are such an Awesome Mother and so very young to put up with this, but I got to tell you, you are a fighter.  You got your son and that is worth fighting for.  I wish you all the luck in the world.  I love your positive attitude inspite of your trials.  Hang in there and YES Miracles can & Do happen!

God Bless,
lmunchkin
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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
amanda100wilson
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« Reply #3 on: July 31, 2012, 08:11:37 PM »
I believe that this is fairly standard for the antibodies not to go away.  With paired donations once they find a donor it is customary to carry out plasmapheresis or reduce the antibody level by some other means.  The paired donor list is precisely for people like you and me that are highly sensitised so I am sure that it will happen soon.  I was on my paired list for a year before getting a call.  The main thing is that you have a donor.  Have you thought about going for an evaluation on another list at another hospital. Not all are in the same scheme.  For example, John Hopkins is in the UNOS scheme for paired donation, whilst others are in the National Kidney Federation scheme.  May increase your chances since you will be accessing another donor pool then.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
jeannea
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« Reply #4 on: July 31, 2012, 10:58:56 PM »
Well it's not exactly as bad, but I had 97% antibodies and I got a match in March. It was even sooner than I expected. It can happen. Your kidney is out there!
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Lillupie
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wedding 12-10-11

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« Reply #5 on: August 09, 2012, 03:09:28 PM »
Does that mean you have a live donor?

Lisa
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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
MommyChick
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Me & my precious Miracle !!!
« Reply #6 on: August 09, 2012, 04:00:35 PM »
Quote from: Lillupie on August 09, 2012, 03:09:28 PM
Does that mean you have a live donor?

Lisa
Yes I finally have a a living donor but for the swap program since no ones a match due to antibodies. But it's better then nothing so I'm hoping for the best :)
Logged
~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
jeannea
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Posts: 1955
« Reply #7 on: August 10, 2012, 02:54:00 PM »
You might as well hope for the kidney. I tried Power Ball the other night and didn't even win another free ticket.
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MommyChick
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Posts: 325


Me & my precious Miracle !!!
« Reply #8 on: August 10, 2012, 05:16:46 PM »
Quote from: jeannea on August 10, 2012, 02:54:00 PM
You might as well hope for the kidney. I tried Power Ball the other night and didn't even win another free ticket.
haha, me too  :rofl;
One of these days luck will be on my side, so I hope
Logged
~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
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