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Author Topic: POLL: Who was your kidney donor?  (Read 5569 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: May 17, 2008, 10:52:49 AM »

Vote once please.
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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
monrein
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Might as well smile

« Reply #1 on: May 17, 2008, 02:38:56 PM »

My cadaver kidney came from a 17 year old girl in London Ontario who died from a sudden brain hemorrhage.  The kidney was never perfused on a machine which was pretty common back then but was just iced.  I was called at midnight on a Saturday just as she was being declared brain dead and I was transplanted at 6:00am the following morning.  That was in January, 1985.  When they eventually remove it I'm hoping they'll let me have it so I can honour my donor and her family by giving it a proper burial and saying my final thank you.  I know nothing else about my donor except her age, location and  the cause of her death.  I've always wished I could have met her family but that was just not done at that time.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
spacezombie
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Melissa: ESRD since 1992, transplant June 10, 2008

« Reply #2 on: May 17, 2008, 03:00:24 PM »

From the time I first learned of my kidney disease at three years old, my mom has been telling me she would be my donor. She donated to me in 1997 and has told me that she has always been thrilled to be able to help me. She wanted to donate her other kidney to me when the first one failed but of course, the doctors and I would not allow that. I had seven GREAT years from that kidney. I traveled and did amazing things. I feel a lot of guilt, however, since it was my mom's kidney. I always think about different scenarios in my head where I might have done something differently and not lost the kidney. Part of why I lost it was because I lost my job (and insurance) and couldn't always afford the medication. :/
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I have Alport's Syndrome. My kidneys failed when I was 14 and I was on PD for five years before receiving a kidney transplant from my mother. That kidney failed in 2004 and I've been back on PD ever since. I am undergoing treatment for my high antibodies at Cedars-Sinai medical center. I had a kidney transplant on June 10, 2008. My boyfriend was the donor.
Laurie
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May 13, 2008

« Reply #3 on: May 17, 2008, 08:16:40 PM »

I think my donor was a 49 year old Male, but I'm not excatly sure. Everyone I asked wasn't sure and were supposed to check on it, but didn't.
I go to my first clinic on Monday, so I will ask again.
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
st789
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« Reply #4 on: May 17, 2008, 08:43:44 PM »

Sorry about the cause of your failed kidney transplant spacezombie.  Many kidney transplant patients feel the same way.
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donnia
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me and my donor Joyce

« Reply #5 on: May 26, 2008, 07:00:41 PM »

Sorry about the cause of your failed kidney transplant spacezombie.  Many kidney transplant patients feel the same way.

Yes, and it is a shame that we even have to worry about that.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
Chris
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« Reply #6 on: May 27, 2008, 09:39:47 PM »

This weekend I was going thru my files and shredding old documents I no longer needed. I ran across a letter from the Gift of Hope that I never opened. It was from the mother of my donor, written in 2002. No idea why I didn't open it, but now I question myself, should I write back?
« Last Edit: May 27, 2008, 11:20:18 PM by Chris » Logged

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?
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #7 on: May 27, 2008, 11:18:21 PM »

This weekend I was going thru my files and shredding old documents I no longer needed. I ran across a letter from the Gift of Hope that I never opened. It was from the mother of my donor, written in 2002. No idea why I didn't open it, but now I question mysel, should I write back?

If I were that mom I would be most grateful to know the good the donation did.
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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
Chris
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« Reply #8 on: May 27, 2008, 11:29:37 PM »

According to the letter, I did contact her. I just don't remember it and if I have the file, it's on an old 3.5" disk I have no access too.
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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?
Romona
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« Reply #9 on: May 28, 2008, 04:03:57 AM »

I would write if you feel comfortable.
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monrein
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Might as well smile

« Reply #10 on: May 28, 2008, 02:22:23 PM »

I would write her for sure and if you did already that's OK, I bet she'd appreciate a little update.  It is sad that she had to lose her son for you to gain a kidney but it really is something wonderful coming out of something tragic and that Mom is actually responsible for the gift as she could have said no and that would have been that.  Instead she did the right thing and a person can never hear that enough times.
I wish I had the chance to tell my donor's parents how much their daughter's kidney gave to me.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
MIbarra
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Stopping to smell the bluebonnets

« Reply #11 on: May 28, 2008, 02:56:17 PM »

I had a cadaver donor. They told me he was in his fifties and lived in Baton Rouge.
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Cadaver transplant April 29, 2007
KT0930
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« Reply #12 on: May 28, 2008, 05:08:25 PM »

First one, in 1982, came from Mom.

Second one, in 2002, came from Dad.

Third one, in 2008, came from cadaveric donor. All I've been told so far is the donor was a 35 year old male in Oklahoma (and I'm in Georgia).
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
Chris
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« Reply #13 on: May 31, 2008, 12:37:57 AM »

I'm gonna try to write a letter after I have knee surgery Tuesday since I will have some time to look up the criteria of writing a letter from the Gift of Hope website.
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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?
donnia
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me and my donor Joyce

« Reply #14 on: June 08, 2008, 05:10:48 AM »

Joyce, my donor, is living - non - related.  She and I have been friends since 3rd grade.  She is my inspiration.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
keith
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« Reply #15 on: June 11, 2008, 08:27:54 AM »

my kidney came from a young lady that was murdered in that shooting that happend a Lil over six months ago da shooting in a mall ( is that y my sense are almost 5- 8 times better than b4)
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Life ain't Life wit out Me!!! U Heard Me  
Transplanted on 12-6-2007 on dialysis7+yrs
Started Dover dialysis support group. A group for patients, familyand friends.
NOW RUN-Tel-Dat
Sunny
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Sunny

« Reply #16 on: June 11, 2008, 02:10:22 PM »

Wow! I am amazed at these stories.
If they only knew how much their gift, even if so untimely for them, has meant to you.
If more people knew the very real stories talked about here, I think it would really motivate people to be cadaver donors.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
willieandwinnie
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« Reply #17 on: June 11, 2008, 03:46:32 PM »

Len's kidney came from a 40 year old male from Houston Texas and we are in Maryland. It is a very sad story of his death and I have written the donor family to tell them how much WE appreciate what they did.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
MIbarra
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Stopping to smell the bluebonnets

« Reply #18 on: June 11, 2008, 04:00:28 PM »

This is probably in some other post, but I've been looking online and can't find an answer...

How were you able to write your donor's family? I found a website for recipients to write their donors in Illinois, but I live in Texas and my donor lived in Lousiana. I can't find any info on how to go about this.

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Cadaver transplant April 29, 2007
Chris
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« Reply #19 on: June 11, 2008, 05:57:11 PM »

This is probably in some other post, but I've been looking online and can't find an answer...

How were you able to write your donor's family? I found a website for recipients to write their donors in Illinois, but I live in Texas and my donor lived in Lousiana. I can't find any info on how to go about this.



Was it the Gift of Hope you tried?
Not sure if UNOS can recommend who to write though, but one place might worth trying is the transplant center who did your surgery.
« Last Edit: June 11, 2008, 06:00:29 PM by Chris » Logged

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?
MIbarra
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Stopping to smell the bluebonnets

« Reply #20 on: June 11, 2008, 07:43:24 PM »

It was the gift of hope in Illinois that I found.

I didn't really want to use the transplant center where I had the transplant because I wasn't really impressed in the end with them. But I guess I will as a last result.
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Cadaver transplant April 29, 2007
kidneyx3
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« Reply #21 on: June 12, 2008, 12:50:26 AM »

My kidney came from a member from my church/my sons' classmates' mother. She saw in the church bulletin that I needed a kidney. She looked over at her husband and said I need to get tested because I know I'm a match for her and this is what I need to do. Sure enough she went to get tested and she was almost a perfect match. God works in mysterious ways. :thx; :thx; :thx;
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MyRenalRomance
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« Reply #22 on: June 30, 2008, 09:42:49 PM »

  :cuddle; My donor was my absolutely wonderful younger brother (and only sibling).  The transplant took place on June 20, 2008.    :cuddle;
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Kidneys damaged by hypertension/scleroderma 1987
In-center Hemodialysis:  May 2007 - October 2007
Switched to Manual PD October '07 - January '08
Switched to PD Nighttime Cycler January '08
Kidney transplant from living related donor June 2008
Chris
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« Reply #23 on: June 30, 2008, 09:44:51 PM »

Congratulations  :bandance;
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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?
pelagia
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« Reply #24 on: July 01, 2008, 04:41:16 AM »

My kidney came from a member from my church/my sons' classmates' mother. She saw in the church bulletin that I needed a kidney. She looked over at her husband and said I need to get tested because I know I'm a match for her and this is what I need to do. Sure enough she went to get tested and she was almost a perfect match. God works in mysterious ways. :thx; :thx; :thx;

My sister's husband ended up being my husband's donor.  A number of people were tested, but Michael said he that he "knew from the beginning" that he was going to be the donor.  We didn't even know that he was tested until a couple of months later.  He called us on my birthday, which makes that the most amazing birthday I have ever had.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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