I got a letter from my donor's family!!!!!!!!

[jbeany]

Okay, packing away the picture of my beautiful donor to move it to my new place finally got my butt in gear.  Here's what I mailed out, minus names.  I typed it out so I could get it right, but I hand wrote it in the card.

Dear Donor's Mom,

I’ve tried to write this letter a thousand times, but nothing I can put on paper ever seems right.  There are no words sufficient to express gratitude for this kind of gift, but I’ll make some fumbling attempt here to thank you for what you have given me.
 
Since you mailed me L’s picture, I’ve had it on my mantel with the pictures of my family.  I’ve seen her beautiful smile shining out at me every day.
 
 I had  serious complications with my transplant, but through it all, L’s strong kidney and pancreas kept on going.  After months of too many hospitals and doctors, I’m now stronger and healthier than I have been in over a decade.   After years of chronic  illness and dialysis, being this healthy is an amazing feeling!

Thanks to this wonderful gift,  I’m restarting my life.  I’ll be moving and starting school within a week of the one year anniversary of my transplant.  L’s picture will be one of the first things I unpack in my new place.  Both her picture and her spirit will be with me as my family and friends celebrate my transplant anniversary.

 For all of these joys, I thank you with all my heart.  My joy at my new life will always be tempered by your loss, but  I hope that my happiness gives you some peace when you think of L. 

jbeany

Equal parts joy and sorrow, you know?

[Dianejt]

 

[okarol]

  Beautiful letter JB! 

[paris]

JBeany, your words are beautiful.  Just perfect.   

[natnnnat]

That would be a hard card to write.  But I would think something like this would mean an incredible lot to me, if I had lost a relative and got this in the mail.  Good work jbeany 

[RichardMEL]

very appropriate and well written letter. I am sure the donors mom will be happy to receive positive proof that even now her daughters gift is helping someone have a more normal life "healthier than in the last decade"

well done!

[kellyt]

    This is a great thread.

[monrein]

Beautiful letter from both perspectives...donor family member and recipient.

[Jess21]

I got a second letter from my donor family.   About a month ago I got their contact info.  Apparently the place copied down my wrong number, cause she tried calling my house number which is no longer...

[Jessmomto3]

Honestly, I'm kind of glad to see that I'm not the only one with a mental block.  Logan's first kidney anniversary is in Sept and I have yet to write a note even though I've wanted to every day.  We've been praying for the donor and then his family every day since we knew he would need a kidney.  First we prayed for the donor--that they were living well.  Then--the day before transplant something (God) told me to start praying for the donor's family.  We've prayed for them everyday at dinner ever since.  Our church prays for them at all holidays and of course soon for the one year anniversary.  But, I don't know what to write.  How do you say thanks to someone for saving your child when they lost theirs?  I've really got to come up with something soon.  I'd hate for it to be a whole year and them have gotten nothing from us.

[jbeany]

Honestly, I'm kind of glad to see that I'm not the only one with a mental block.  Logan's first kidney anniversary is in Sept and I have yet to write a note even though I've wanted to every day.  We've been praying for the donor and then his family every day since we knew he would need a kidney.  First we prayed for the donor--that they were living well.  Then--the day before transplant something (God) told me to start praying for the donor's family.  We've prayed for them everyday at dinner ever since.  Our church prays for them at all holidays and of course soon for the one year anniversary.  But, I don't know what to write.  How do you say thanks to someone for saving your child when they lost theirs?  I've really got to come up with something soon.  I'd hate for it to be a whole year and them have gotten nothing from us.

A picture is worth a thousand words - send them one of Logan holding a thank you sign?

[jbeany]

Auuugh!  I got a card back from my donor's mom.  I finally managed to send her a reply to her just in time for the one year anniversary of my transplant.  It's been 6 months since then, and I've been crazy busy, so I didn't think much about hearing from her.

I opened the card and read a completely generic note,with no salutation except Hello, and a "Please write when the time is right for you."  No name, no response to what I wrote, nothing.

I freaked.  It took me 3 months to write the letter and it doesn't sound like she got! 

It was Friday night when I got mail, so I spent a long weekend and called Gift of Life first thing Monday morning to find out if they track the letters. 

Yup.  She got mine.  She just sent a generic form letter to all the recipients, no names on any of them.  The woman from Gift of Life even said that she had called her to make sure she wanted to send them that way, because of how it sounded and she insisted.  I was the 3rd recipient to make the same distraught call that morning alone.

So, panic over - now, I just have to figure out what to write to her this time. 

[Brightsky69]

I wrote a note to my donor family a few weeks after my transplant. I wanted to say thank you. I know my donor was 48 years old and died from a brain aneurysm. So far I haven't heard anything back. Thats ok

[peleroja]

How cool is that?!  I'm so happy for you and your transplant!

[okarol]

If it were me I would send a photo, a short note about my story of CKD, and how the transplant has benefitted me. I would also include my phone number and say, "If you'd like, please call me anytime."

[Chris]

That was good Jess.
 
I have not heard back from mine, but I am notgoing to push the issue with the family. The family can contact me when they want. In my first letter I thanked them and expressed that they do not have to contact me if they do not want to. I got one letter back and sent an update letter back in 2008 again thanking them. Although part of me felt odd writting to them.

[RichardMEL]

In  oz  they  would  not  let  you  send  a  pnoto  or  ph  number-at  least  not initially.  You  can't  identify  yourself.  I  think  though  if you  both  write  back  and  request  it  orsomething  they  will  allow  it.

I  plan  to  send  a  letter  fter  six  or  so  months .  Tnat  will  be  June.

[Chris]

In  oz  they  would  not  let  you  send  a  pnoto  or  ph  number-at  least  not initially.  You  can't  identify  yourself.  I  think  though  if you  both  write  back  and  request  it  orsomething  they  will  allow  it.

I  plan  to  send  a  letter  fter  six  or  so  months .  Tnat  will  be  June.

Same here.

[Ang]

about 2 weeks after tx, the tx co ordinator rings me in the evening.
were sending messages to donor families
"what would you like to say to your donor family"
 i said what i felt,( how about a bit of notice)
when you think of springing some thing like this

thru sloppy protocols i found out the sex,age and cause of death of my donor.

[cariad]

Auuugh!  I got a card back from my donor's mom.  I finally managed to send her a reply to her just in time for the one year anniversary of my transplant.  It's been 6 months since then, and I've been crazy busy, so I didn't think much about hearing from her.

I opened the card and read a completely generic note,with no salutation except Hello, and a "Please write when the time is right for you."  No name, no response to what I wrote, nothing.

I freaked.  It took me 3 months to write the letter and it doesn't sound like she got! 

It was Friday night when I got mail, so I spent a long weekend and called Gift of Life first thing Monday morning to find out if they track the letters. 

Yup.  She got mine.  She just sent a generic form letter to all the recipients, no names on any of them.  The woman from Gift of Life even said that she had called her to make sure she wanted to send them that way, because of how it sounded and she insisted.  I was the 3rd recipient to make the same distraught call that morning alone.

So, panic over - now, I just have to figure out what to write to her this time.

Glad she got the letter, jbeany. It sounds very much to me like she is overwhelmed, no doubt still grieving, and wants to hear what has become of the people who have been touched by her daughter without having to spend the energy in writing personal notes to each recipient. It sounds to me like she is trying to tell you that she does appreciate the letters, but is not ready to engage in a lot of correspondence. I get really lazy when I'm depressed, so I am basing this guess on how I'd react in her place. I would just tell her about how well you're doing, and she'll hopefully see some of her daughter in your successes. Good luck. I can only imagine what a delicate situation this is.

[jbeany]

I don't really want to hear from any of the recipients from when my dad died.  I guess because then I have to remember that day, and doing CPR and watching the paramedics lose him again on the way to the hospital and having to sign the paperwork.  I'd rather remember him healthy and happy.  It's great if people were helped, but my dad did charity work all the time.  If he helped anyone with a transplant, they'd just have to get at the end of a long line of people he helped when he was alive.  He didn't expect thanks from any of them, so why would he or I want them now?  I don't volunteer to get thanked, I do it because it makes me feel good to help.

The mess with the generic card makes me wonder, too.  Is she just writing because she thinks she's supposed to?  Is she writing to get some encouraging feedback because she's depressed, like cariad suggested?  The lady I talked to at Gift of Life said, "She's having a really rough time right now."  Well, okay, but I'm not sure how much help I can be with that.  All I can really say is "I feel great."  Good for me, but if she's still an emotional wreck after a year and a half, will hearing that help or make her feel worse? 

I wonder, do the survivors ever get resentful?

 I don't have any idea what her response is, because I didn't get one except "Hi. Write something."  If I write back about how wonderful my life is now, is that just going to make her more depressed because it's me and not her daughter?  I don't want to make things worse for her, but she hasn't given me any way to gauge what might help.

[Chris]

jbeany, how about not rushing to get that letter out, maybe wait a year? The fear I had and have if Iwrite/ wrote was to bring up bad memories. I know how my donor died, but I have no idea if family was with her at the time.
 
Since you don't know about the donor's family other than the woman is having a hard time, I think a better way she could have made a generic letter was to basically say Thank You for the Thank You and if you want to contact me further, please write more. The way that generic leter sounds to me is creepy as in why should I devulge more about myself when I have no feedback from my letter. But again, I wouldn't go rushing to get another letter out unless you feel comfortable and maybe more time for them to grieve so that they may write more back. If you don't get much back then, it may not be worth the frustration to communicate.
That's my 

[jbeany]

You're thinking along the same lines I was, Chris.  I was debating just letting things ride for a couple of months or sending back a "Thinking of You" card with a really short, non-detailed note about doing fine and keeping incredibly busy with school and volunteering. 

[RichardMEL]

Ang.

Wow.  That  seems  wrong.  My  post  tx  docs  are  very  specific  about  the  subject  and  that  it  is  up  to  US  if  and  when  we  write.  I  will  post  it  when  I  get  home.

The  way  you  describe  things  it  is  like  the  co-ordinator  is  running  the  show  to  their  timetable.  That  seems  wrong  with  such  a  personal  thing.

I  am  glad  mine  is  not  like  that.

[cariad]

You're thinking along the same lines I was, Chris.  I was debating just letting things ride for a couple of months or sending back a "Thinking of You" card with a really short, non-detailed note about doing fine and keeping incredibly busy with school and volunteering.

This seems like a great idea, jbeany. I am with Chris, do whatever makes you feel comfortable. That is a lot for Gift of Hope to lay on your doorstep - that the mother is struggling. As you've said, what can be expected of you? Nothing you say to her is going to make it OK that she lost her daughter, and agonizing about it is not any way to respect someone's memory. The wording is definitely giving you permission (not that you need permission) to wait as long as you feel is necessary. I suspect (but it's just a guess) that she thinks that this will somehow heal her to interact with the donors. Hopefully, if she finds it's not helping, or heaven forbid making it harder for her, she will just stop the correspondence and not feel guilty about it.