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Dialysis: Transplant Discussion
Note from Organ Donors Family
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Topic: Note from Organ Donors Family (Read 5158 times)
willieandwinnie
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Note from Organ Donors Family
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on:
August 19, 2009, 11:47:58 AM »
We received a note from the Organ Donor Sharing Network that said they had a request from donor family to see how Len was doing. It will be 2 years on 9/7 and I already got a Thank You, You Have Not Been Forgotten Card and plan to send it after his transplant follow up on 9/9. I am ever so grateful for 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"
okarol
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Photo is Jenna - after Disneyland - 1988
Re: Note from Organ Donors Family
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Reply #1 on:
August 19, 2009, 11:50:19 AM »
Do you know much about the donor?
I know if I donated a loved ones organs that I would be happy to know that someone was doing okay.
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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
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News video:
http://www.youtube.com/watch?v=J-7KvgQDWpU
Romona
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Re: Note from Organ Donors Family
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Reply #2 on:
August 19, 2009, 12:09:49 PM »
I am so glad you are sending them a card. I love my donor family.
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petey
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Re: Note from Organ Donors Family
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Reply #3 on:
August 19, 2009, 02:31:28 PM »
How wonderful, willieandwinnie! First that this family donated their loved one's organs, and second that they still remember that it changed someone else's life.
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Laurie
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May 13, 2008
Re: Note from Organ Donors Family
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Reply #4 on:
August 26, 2009, 08:19:59 AM »
W&W I'm sure they will be so grateful to get a card from you.
After several letters exchanged between my donor's son and myself, we now exchange emails and texts daily, are friends on Facebook and plan on meeting this weekend.
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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
willieandwinnie
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Re: Note from Organ Donors Family
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Reply #5 on:
August 26, 2009, 08:38:33 AM »
Oh Laurie, how cool is that. Len's donor was was Houston Texas and had no family, his girlfriend made the decision to donate his organs and I was touched that she wanted to know how he was doing.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
willowtreewren
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My two beautifull granddaughters
Re: Note from Organ Donors Family
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Reply #6 on:
August 26, 2009, 11:00:31 AM »
What a wonderful gesture in both directions.
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Wife to Carl, who has PKD.
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Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
Jess21
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Re: Note from Organ Donors Family
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Reply #7 on:
August 26, 2009, 09:42:04 PM »
I'm writing to my donor family this week...still not sure what to say....my donor was pediatric..
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
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Chris
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Re: Note from Organ Donors Family
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Reply #8 on:
August 26, 2009, 10:23:45 PM »
That's great W&W
Jess that is the hardest part. In the back of my mind was when is the right time to write. They just lost a family member and you do not want to upset them, but at the same time you want to thank them. Is Wisconsin part of The Gift of Hope? That is where we had to send letters and get them approved before they would send them.
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-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
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Rerun
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Re: Note from Organ Donors Family
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Reply #9 on:
August 26, 2009, 10:33:13 PM »
Initially I sent my donor family a letter through the donor network. After six years I wanted to send them a care package to let them know "What A Difference They Made In My Life". That is also a song by Ronnie Milsap which I recorded on a tape and sent in my care package. We met after that and have been fast friends since.
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Jess21
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Re: Note from Organ Donors Family
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Reply #10 on:
August 26, 2009, 10:46:43 PM »
University of WI has some sort of donor network. I send the letter to them, they send it to the donor family.
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Wattle
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Re: Note from Organ Donors Family
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Reply #11 on:
August 27, 2009, 07:15:33 PM »
Quote from: Jess21 on August 26, 2009, 09:42:04 PM
I'm writing to my donor family this week...still not sure what to say...
I want to write a letter to the donor family too. I too am unsure what to say. Everything I come up with sounds a little corny.
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
KT0930
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Re: Note from Organ Donors Family
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Reply #12 on:
August 27, 2009, 07:44:15 PM »
I've been writing my letter in my head for over a year and a half. Words just can't communicate what I want them to know they've done for me and my family.
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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.
cariad
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Re: Note from Organ Donors Family
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Reply #13 on:
August 27, 2009, 07:57:18 PM »
I have often wondered what I would say were I to write such a letter, and this has always led to me imagining what I would want to hear if I lost a loved one and consented to donate his or her organs.
I once read about a woman who lost her son (still a child) and donated his organs to at least half a dozen people. She never heard from any of them. Then over eight years after his death, one of the recipients wrote her a letter. The word she used was 'confusing'. Here she had completed the grieving process, and someone, probably with the best intentions, writes to her and triggers all of those memories again. The message I got from that was to not let yourself become paralyzed by worrying too much about the perfect phrasing because while it may be possible to write too soon, it is also possible to leave it much too long. Of course, I am sure I would obsess over every word, so I know it's easier said than done.
Good luck to all the letter-writers.
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Hanify
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Re: Note from Organ Donors Family
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Reply #14 on:
August 27, 2009, 08:34:55 PM »
My husband's brother died at 17 in a motorbike accident (in 1977). They donated everything that could be donated at the time - including skin and retina etc. Paul's mother to this day is comforted by the thought that at least some good came from his so unnecessary death. There was no system at the time for recipients to find out who they got stuff from, so she's never had a letter, but I know she would love it even now if someone wrote.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008. Now on PD with a cycler. Working very part time - teaching music. Love it. Husband is Paul (we're both 46), daughter Molly is 13.
Chris
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Re: Note from Organ Donors Family
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Reply #15 on:
August 27, 2009, 09:13:55 PM »
Not sure when I wrote my letter, I don't have access to a floppy drive anymore to where I saved it. I kept it simple. Basically I told them sorry for their loss and that I wanted to thank them. I have written a total of 3 letters and only recieved one responce. I don't push the issue and do not give it much thought anymore. I respect their wish to not communicate because they did loose their daughter after all and that must have been hard.
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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?
Rerun
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Going through life tied to a chair!
Re: Note from Organ Donors Family
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Reply #16 on:
August 27, 2009, 09:22:33 PM »
Those of you waiting to write your letters but don't know what to say or think it may sound corny. They will LOVE to hear from someone who has part of their loved one.
JUST DO IT~
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