Hi all,
Looking for your thoughts, Did you write to your donors family? Do you think it would be better to leave it now till christmas is bye with as its not been a year since my transplant and i dont want to cause upset?
Any other points gladly recieved.
Thanks Tom.
Writing to a donor family
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hi Tom,
I wrote to my donor family earlier this year. I haven't receievd a reply, although I was told that the majority of donor families don't write back.
As for timing: As recipients i think we often project our own guilt about our transplants onto the donor families and imagine that they don't want the reminder around anniversary dates. I had a long conversation with a donor family the other day about this, and essentially they are always reminded of their loss every day and there is no right or wrong time to write...
The other way to think about it is: it might make their sad Christmas more bearable knowing that their relative's legacy has changed your and your family's life.
Knowing a few donor families through LLGTL, they are often plagued by thoughts about whether donating was the right thing to do or not... by getting a letter I think it can often be a huge relief and a time of closure for both them as well as you
Hope this helps,
Jen
I wrote to my donor family earlier this year. I haven't receievd a reply, although I was told that the majority of donor families don't write back.
As for timing: As recipients i think we often project our own guilt about our transplants onto the donor families and imagine that they don't want the reminder around anniversary dates. I had a long conversation with a donor family the other day about this, and essentially they are always reminded of their loss every day and there is no right or wrong time to write...
The other way to think about it is: it might make their sad Christmas more bearable knowing that their relative's legacy has changed your and your family's life.
Knowing a few donor families through LLGTL, they are often plagued by thoughts about whether donating was the right thing to do or not... by getting a letter I think it can often be a huge relief and a time of closure for both them as well as you
Hope this helps,
Jen
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JMan
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I can't remember if I ever wrote to donor families. Pretty sure I did when I was in paeds. As for how to write, I don't think theres a write on wrong, but there's suggestions on the UK transplant website and others.
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Read my blog:)
Live to Fly
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Hiya
Writing to my donor family was one of the hardest things I've had to do and I find it difficult evertime I write. I've had feedback that they are always pleased to hear from me and are comforted by this. I am always respectful obviously and make sure I don't make any silly refererence such as giving the kidney a name which I am told is a no no. Not that I have anyway.
I am lucky as I had a son after my transplant and so giving them updates on him and me is a fab thing to be able to do.
Although I find it hard (very emotional) I make sure I do it as I feel it is a very important thing to do. I have a hard one to write now as I have to start dialysis again soon. I always write on the anniversary as we are both thinking of the person who died at thet time.
Your transplant co-ordinator will vet your letter anyway to make sure there is nothing too personnal or inappropriate in it.
Best of luck. Try and put yourself in their position when you write it. I think it would be comforting to know that your loved is still doing good after their death and that a decent person has received the organ.
Kath
Writing to my donor family was one of the hardest things I've had to do and I find it difficult evertime I write. I've had feedback that they are always pleased to hear from me and are comforted by this. I am always respectful obviously and make sure I don't make any silly refererence such as giving the kidney a name which I am told is a no no. Not that I have anyway.
I am lucky as I had a son after my transplant and so giving them updates on him and me is a fab thing to be able to do.
Although I find it hard (very emotional) I make sure I do it as I feel it is a very important thing to do. I have a hard one to write now as I have to start dialysis again soon. I always write on the anniversary as we are both thinking of the person who died at thet time.
Your transplant co-ordinator will vet your letter anyway to make sure there is nothing too personnal or inappropriate in it.
Best of luck. Try and put yourself in their position when you write it. I think it would be comforting to know that your loved is still doing good after their death and that a decent person has received the organ.
Kath
We wrote after a few months to our daughter's donor family and she sent a card. We were asked not to put any date on the letter as the transplant co-ordinator would judge if they were in the frame of mind to receive it, and possibly wait a while before giving it to them.
In the event we got a lovely reply very quickly, they seemed so pleased to hear that something good had come out of their loss (I think it being a child who had benefitted helped that).
So whenever you send it, they may not actually receive it for a while if this is a common practice.
In the event we got a lovely reply very quickly, they seemed so pleased to hear that something good had come out of their loss (I think it being a child who had benefitted helped that).
So whenever you send it, they may not actually receive it for a while if this is a common practice.
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bigbuzzard
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Although my own transplant was from a living donor, I've had contact with two parents of people who donated after death. One was a long conversation on the phone with the father of someone whose son died during a sporting event a few years ago. It was one of the most moving conversations I'e ever had. He said that he appreciated the chance to talk to someone who had had a transplant. I don't know if he had ever heard from the recipient(s) of his son's organs. (In fact, I suppose some families may hear from more than one recipient).
The others were Sue and Richard Cansdale. They set up http://legacyoflife.co.uk/ and have done some amazing work to raise awareness about organ donation, particularly from their point of view.
The others were Sue and Richard Cansdale. They set up http://legacyoflife.co.uk/ and have done some amazing work to raise awareness about organ donation, particularly from their point of view.
I wrote to my donor family earlier this year - worried about anniversary of death and Christmas reminders. I got a lovely letter back from them (I knew that they had asked about me at the first anniversary) and they have heard from a number of the other recipients, I think there were seven.
My view was that I wanted to be able to describe how much I had benefited from it and rewrote the letter in my head literally dozens if not hundreds of times. In retrospect I wish I had written earlier because I would never get it exactly 'right' - all I could do was do my best.
So my advice is 'go for it' there is never going to be a perfect time. Also you may not hear from them as they may have requested no contact. I recently met an organ donor co-ordinator who told me of a story where the family did not want to hear anything, then on the 10th anniversary changed their minds!
My view was that I wanted to be able to describe how much I had benefited from it and rewrote the letter in my head literally dozens if not hundreds of times. In retrospect I wish I had written earlier because I would never get it exactly 'right' - all I could do was do my best.
So my advice is 'go for it' there is never going to be a perfect time. Also you may not hear from them as they may have requested no contact. I recently met an organ donor co-ordinator who told me of a story where the family did not want to hear anything, then on the 10th anniversary changed their minds!
Hi Guys
I too am struggling what to write Ill tell you why and see if anyone can help!
When I got the call I had only been on PD for 8mth but at the time my daughter (Victoria)who was disabled was unwell herself.
I was stuck in hospital for 5 weeks alot of this time she was too poorly to visit (I missed her so)she only came to see me once and my hubby could not visit either as he was too worried to leave her with carers .
I was only out of hospital for 10 days when she died !
Now the donor family had been together for 12 years and we he died he lft a long term partner and 18 mth daughter
I was going to write and tell his partner how it was going to help me do more for my Victoria ( it didnt work out)
my kidney is fixed for now but my heart is breaking
then I think of his partner and lottle girl and we are both in the same situation at Xmas
should I make contact or what
Chris
I too am struggling what to write Ill tell you why and see if anyone can help!
When I got the call I had only been on PD for 8mth but at the time my daughter (Victoria)who was disabled was unwell herself.
I was stuck in hospital for 5 weeks alot of this time she was too poorly to visit (I missed her so)she only came to see me once and my hubby could not visit either as he was too worried to leave her with carers .
I was only out of hospital for 10 days when she died !
Now the donor family had been together for 12 years and we he died he lft a long term partner and 18 mth daughter
I was going to write and tell his partner how it was going to help me do more for my Victoria ( it didnt work out)
my kidney is fixed for now but my heart is breaking
then I think of his partner and lottle girl and we are both in the same situation at Xmas
should I make contact or what
Chris
Life is so short !
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bigbuzzard
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Hi Chris
Every now and then I read something on here that makes me stop, take a deep breath, and just sit. This is one of those.
What I know is that none of us can truly put ourselves in somebody else's shoes and second guess their emotions. I also know that sharing something of ourselves genuinely and sincerely with somebody else can be really powerful, and if it comes from a place of love and compassion, it can only do some good.
It seems to me that it's really valuable to show appreciation of your donor's act, in a way that will give them comfort. You can also tell them what happened after, and how it means that you do understand something of their situation.
If you write something, and aren't sure whether it says what you want it to, show it to someone you trust - just like I'm about to do with this before I click on 'submit'.
We really are all in this life together, and it always helps to realise that we're not alone.
Andy
Every now and then I read something on here that makes me stop, take a deep breath, and just sit. This is one of those.
What I know is that none of us can truly put ourselves in somebody else's shoes and second guess their emotions. I also know that sharing something of ourselves genuinely and sincerely with somebody else can be really powerful, and if it comes from a place of love and compassion, it can only do some good.
It seems to me that it's really valuable to show appreciation of your donor's act, in a way that will give them comfort. You can also tell them what happened after, and how it means that you do understand something of their situation.
If you write something, and aren't sure whether it says what you want it to, show it to someone you trust - just like I'm about to do with this before I click on 'submit'.
We really are all in this life together, and it always helps to realise that we're not alone.
Andy
Chris, I cannot tell you how your sad story touched me - it sounds as if the whole experience was very traumatic.
I do have a slightly different perspective than Andy however and my suggestion would be either to not write at present, or just briefly write expressing your thanks but little more.
I sense that what should have been a wonderful time has been mixed with the trauma of your complications, the worry and loneliness missing your daughter and husband, with finally the tragic loss of a much loved child. Have you really been able to appreciate your gift yet?
It would be very human to have very mixed emotions about the whole time and it is probably still very 'raw' and you are still grieving not just for the loss of your child but also the life with her that you imagined your transplant would bring. Perhaps it would be helpful to be able to process some of the tumult you must be feeling before you actually send your letter, though maybe writing it would help. I know that you never 'get over' such loss, you just learn to live with it.
I have no intention of upsetting or offending you and hope that you take this with the sincere intention this is offered.
I do have a slightly different perspective than Andy however and my suggestion would be either to not write at present, or just briefly write expressing your thanks but little more.
I sense that what should have been a wonderful time has been mixed with the trauma of your complications, the worry and loneliness missing your daughter and husband, with finally the tragic loss of a much loved child. Have you really been able to appreciate your gift yet?
It would be very human to have very mixed emotions about the whole time and it is probably still very 'raw' and you are still grieving not just for the loss of your child but also the life with her that you imagined your transplant would bring. Perhaps it would be helpful to be able to process some of the tumult you must be feeling before you actually send your letter, though maybe writing it would help. I know that you never 'get over' such loss, you just learn to live with it.
I have no intention of upsetting or offending you and hope that you take this with the sincere intention this is offered.