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Author Topic: I got a letter from my donor's family!!!!!!!!  (Read 17519 times)
Jess21
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« on: May 09, 2010, 01:04:13 PM »

 :flower; :flower; :flower;
On the 6th was 10 months since my transplant.  As many of you know, I sent a letter back in November to my donor family, with no response.   Yesterday in the mail I got a 3 page letter and pictures from my 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)
monrein
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Might as well smile

« Reply #1 on: May 09, 2010, 01:12:38 PM »

That is very cool Jess.  I still think of my first donor's family very regularly and with tremendous gratitude and that transplant was way back in 1985.
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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)
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Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
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« Reply #2 on: May 09, 2010, 05:56:25 PM »

That's so sweet Jess. I would love to hear more.
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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
RichardMEL
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« Reply #3 on: May 09, 2010, 06:30:23 PM »

wow. It's great they did respond and in a lengthy and personal way, with pictures (of the donor, I presume?). That must give you a more personal link to your special gift giver, and hopefully give them some peace of mind knowing that a beautiful young lady is able to have a more normal life because of their loved one's selfless act even during their time of grief. That is wonderful news! I too would love to hear more about what they wrote and shared - if you feel it's appropriate to share with us.

 :yahoo; :2thumbsup; :clap;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
jbeany
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« Reply #4 on: May 09, 2010, 06:56:30 PM »

Jess, you are braver than I am.  3 months after my transplant, I got a letter from my donor's mom, with a picture of the beautiful teenage girl who was my kidney/panc donor.  I was still quite ill with complications, so I didn't write back right away.  Now every time I try to write back, I go into brain freeze, and can't seem to put a word on paper.  Her picture is on my mantel, with the rest of my family pics, and I look at her wonderful smile every day, but I still can't put my thoughts to paper to send to her mom.
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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.

RichardMEL
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« Reply #5 on: May 09, 2010, 07:11:13 PM »

Jess, you are braver than I am.  3 months after my transplant, I got a letter from my donor's mom, with a picture of the beautiful teenage girl who was my kidney/panc donor.  I was still quite ill with complications, so I didn't write back right away.  Now every time I try to write back, I go into brain freeze, and can't seem to put a word on paper.  Her picture is on my mantel, with the rest of my family pics, and I look at her wonderful smile every day, but I still can't put my thoughts to paper to send to her mom.

wow. I can't imagine how that must feel. I imagine a feeling of happiness and feeling special that you got this gift, and yet sadness at such a beautiful young life cut short and how tragic that must be for her family. I wouldn't know what to say either I think, and I imagine any words would not even remotely do justice to how you feel - a real bag of mixed emotions I would feel.

I think it was a brave and beautiful gesture of the mom to send pics of her special girl to you - not knowing who you were or anything. If it was me I would feel that that gesture deserves a reply. I understand you've been trying to write back, and that's great (so don't think I was trying to call you on that :) ). I guess at the very least mom would appreciate hearing that you are going OK, even with your complications and troubles. I think she'd like to know that her daughter's gift has made a difference for you, and that her kidney/pancreas has gone to a worthy person. I am sure that would help her in a small way - even to know that her daughter is recognised by you by a special spot with your other family photos - i think that would be very important to that girl's family.

Good luck with writing that letter....  :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
okarol
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« Reply #6 on: May 10, 2010, 01:20:03 AM »

Jess, you are braver than I am.  3 months after my transplant, I got a letter from my donor's mom, with a picture of the beautiful teenage girl who was my kidney/panc donor.  I was still quite ill with complications, so I didn't write back right away.  Now every time I try to write back, I go into brain freeze, and can't seem to put a word on paper.  Her picture is on my mantel, with the rest of my family pics, and I look at her wonderful smile every day, but I still can't put my thoughts to paper to send to her mom.

  "Her picture is on my mantel, with the rest of my family pics, and I look at her wonderful smile every day," written in a card, would be a lovely thing to say.  :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
paris
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« Reply #7 on: May 10, 2010, 10:11:12 AM »

Jbeany, Okarol said it perfect.  That is all you need to say.  I can't imagine how hard it would be to respond.   :cuddle;


Jess, How wonderful that they wrote and shared so much with you.  It must help them to know their child lives on with you.  Sometimes, we get so wrapped up in the technical side of transplants and we need to read things like this to remind us how special and how personal donating organs is.   Thanks for sharing this today.
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lou
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« Reply #8 on: May 10, 2010, 11:06:11 AM »

Wow how wonderful to have received a letter!!

I am 2 months since my transplant and have just spent the weekend writing a letter to my donors family. So hard to write. I hope it is ok. x x   
« Last Edit: May 10, 2010, 11:10:47 AM by lou » Logged
Rerun
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« Reply #9 on: May 10, 2010, 11:48:23 AM »

I got my transplant in February 1988 and wrote a letter to my donor family.  Six years later I sent a care package to the family.  Then they wanted to meet and we have been friends ever since.  I always send her a Mother's Day card from me and her son (my donor).  I lost my transplant in 2005 and it didn't make any difference; we are still fast friends.

They love to hear anything.... to know you are doing well.

                   :waving;
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« Reply #10 on: May 10, 2010, 02:22:02 PM »

It's hard to even respond to this thread, I guess you have to live through it to feel the emotional impact of both recieving and sending such a letter. I would think the Mother of the teenager needed to do this in order for her to move forwards.  I just cant imagine.
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Wallyz
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« Reply #11 on: May 10, 2010, 02:49:19 PM »

Man, this is hard. I've got a half written letter that I can't finish.  It's been 5 months.  I need to finish this.  Thanks everyone for pushing me.
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Sunny
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« Reply #12 on: May 10, 2010, 03:52:28 PM »

I think letters are wonderful ideas.
I can see how it must be very difficult to get in the right frame of mind to be able to write such a letter. After all, someone lost a beloved family member and one doesn't want to cause any more pain for that family. But I think that if that family was compasionate enough to have donated organs of their loved ones, then they are likely very pleased to hear from organ recipients. I'm glad you got a letter from your donor's family.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
okarol
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« Reply #13 on: May 10, 2010, 06:11:36 PM »


I was sent an email today from TransplantCafe.com:

Expressing Gratitude to Donor and Donor Families

    * Posted by Lee on May 4, 2010 at 6:51am
In 2002 I created a concept for a set of "transplant greeting cards" to enable transplant recipients an easier means of communicating their gratitude to their donor/donor families for the gift of transplantation. I created the card concept because over the years, while talking with countless transplant support groups, transplant nurses and social workers, I realized that many transplant recipients do not write a letter or send a card of "thanks" to their donor families largely because they cannot find the appropriate words to write. The greeting cards will alleviate much of the discomfort and awkwardness associated with writing a letter, thus enabling recipients to share an appropriate "thinking of you/thank-you" gesture to donor families.

Along with the help of a few friends and the support of Astellas Pharma US Inc.,a new 3rd edition set of eight (8) greeting cards with envelopes has been developed for transplant recipients to send to their donor and/or donor families. These cards are available for FREE at Organ Buddies Inc. (www.organbuddies.com). The only cost is a $5.00 shipping and postage charge. The order form and detail information is available at the Organ Buddies Inc. website. http://organbuddies.com/GreetingCards.htm
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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
jbeany
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« Reply #14 on: May 10, 2010, 07:32:15 PM »

Interesting cards.  They don't have the website set up for debit or credit cards, so you have to mail in the $5.00.  I filled in my mailing address, with no phone or e-mail, and hit the submit button, thinking it would send me to a secure page for the payment by card, and it just said someone would be contacting me.  Guess they will mail an order form, then?  Ahh, at any rate, maybe it will help me get started.  I should at least go to Hallmark and look for a better card.  The coordinator sent a blank, cheapie little thank you card in the packet with the letter from my donor's mom.  It's one of the ones that come 50 to a $3 pack at Walmart.  Not very inspiring for thanking someone for saving your life....

Wallyz and I need to form a support group for the tongue tied.
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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.

Jess21
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« Reply #15 on: May 11, 2010, 08:41:51 AM »

Well I had my transplant at the beginning of July, and didn't send out a letter until late October.  In my letter I just explained my situation and how their decision to donate changed my life.  That was about the easiest way to write to them I think.
I found out that my donor was a 3 and a half year old girl, the 4th out of 5th child in the 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)
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« Reply #16 on: May 11, 2010, 09:12:47 AM »

I know of someone who had a Liver transplant a few years back. They meet the donor's family of the young son who passed away. Both of them shared the same first name and the young man had a tattoo of the same cross the the reciepent always wore. Meeting or exchanging letters must help both famalies come to acceptence on many varying ways. There's so much emotional stuff.
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Wallyz
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« Reply #17 on: May 11, 2010, 02:22:30 PM »

Here's my first effort.

Quote
To the family of my donor-

   I grieve with you over the loss of your loved one. I have been thinking and praying about you since December.  I am writing to let you know what happened after you agreed to donate your family member’s organs.
   I am a 35 year old father and husband. I have had Type 1 diabetes for 20 years.  Before the transplant, I had been on dialysis for a little more than two years.
   In December, I received a kidney and the pancreas of your loved one.   The kidney has been working wonderfully since then, and I have gotten much healthier and feel much better since that time.  As is more common with pancreases, there were complications with the recovery, and was lost after an infection. Up to that point,  it was working beautifully.
   It’s difficult for me to convey how much better my life and my families life has gotten since the transplant.  We have more freedom, I have more energy, and can be more active with my children.
   I realize that my benefit will never be enough to compensate for the loss of your loved one.  I can only express my gratitude that, in the midst of your loss, you were able to consider the needs of another person and another family, and care for us.
   Thank you.  I would appreciate hearing from you about your loved one. 
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staceyand joe92
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« Reply #18 on: May 11, 2010, 08:59:55 PM »

My transplant was in Dec and I sent a letter to donor family the end of Jan. I received a letter from my donors husband in March. It was a very nice letter thanking me for writing but I got the feeling that he wanted closure and no further contact ( didn't include any personal info or future contact info ). I was so happy to at least know that they received my letter and acknowledged how grateful I am and  that my life is forever changed because of the amazing gift of their loved one. I will always think of them and pray for them daily but don't expect any future contact.
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jbeany
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« Reply #19 on: May 11, 2010, 09:27:34 PM »

My transplant was in Dec and I sent a letter to donor family the end of Jan. I received a letter from my donors husband in March. It was a very nice letter thanking me for writing but I got the feeling that he wanted closure and no further contact ( didn't include any personal info or future contact info ). I was so happy to at least know that they received my letter and acknowledged how grateful I am and  that my life is forever changed because of the amazing gift of their loved one. I will always think of them and pray for them daily but don't expect any future contact.

I was on the donating end when my dad passed, although his massive heart attack so far from the nearest hospital meant it was bone and tissue only, not organs.  I guess I didn't really want to hear any more about it after that, either.  It was the right thing to do, but I don't really want to remember that day; I want to remember him laughing and happy.  Maybe that's why I'm so blocked writing my own thank you.

Sounds good to me, Wallyz!

Jess, we have totally hijacked your post, but thanks for starting it - I needed the kick in the pants!
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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.

RichardMEL
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« Reply #20 on: May 12, 2010, 12:07:58 AM »

Wally, I like that letter. It's so hard to write specially when you know next to nothing about the donor, the circumstances, and all that. I think the important thing is to let them know you appreciate the beautiful gift and how it has changed your life for the better, and just how - so they would have positive re-enforcement of the donation and what it means to you.

I think anything more personal and longer would probably need to wait if they wanted to start a dialogue or not - as we've seen from this thread some do not because they need/want closure, and that is definitely their right. I for one would not want to intrude like that if not wanted.

I admire everyone who has taken the time and thought to write. It can't be easy, and while I look forward to the day when it is my turn to write such a letter, I realise even now just how difficult it will be to do so.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
cariad
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« Reply #21 on: May 13, 2010, 12:29:13 PM »

Wallyz, great job on that letter. I would write it up and send it.

Jbeany, I agree with everyone else - tell your donor's family exactly what you told us. You put it beautifully and I have to think that they will be deeply touched to know her picture is in such a place of honor.

Jess, that is so cool that you received a letter. Do you think you'll stay in contact with them?
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Jess21
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« Reply #22 on: May 13, 2010, 04:37:30 PM »

Yes, she said she wanted further contact to show me more pictures and videos.
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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)
Wallyz
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« Reply #23 on: May 13, 2010, 11:30:55 PM »

Thanks for the feedback.  Will send it  tomorrow.
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RichardMEL
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« Reply #24 on: May 13, 2010, 11:43:07 PM »

Yes, she said she wanted further contact to show me more pictures and videos.

I think that's absolutely lovely. I am sure she feels, in a way, that part of her daughter lives on with you and that would be very special to her.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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