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

[okarol]

I have volunteered for several events for Donate Life, and have been fortunate to meet some donor families. Perhaps these people - who are ambassadors for organ donation - are willing to put themselves out there, and perhaps they are unique -- but the comments I heard were that these families were open to getting news about their loved ones organs -- to know that their action created a positive situation. One mom, whose 20 year old son had died, said she heard from a kidney recipient and the liver recipient, but she was now praying that someday she will hear her son's heart beating. She said when you hear nothing from recipients you think that maybe the organ was not used - or that it rejected early on. Obviously everyone is different and you should do what you're comfortable with.

[carol1987]

Jbenay... that is odd... I think your idea of a simple thinking of you card is a good idea....

[Jess21]

Well here's an update, guys...
My donor family and I sent a few letters back and forth.  We have eachother's addresses now.  The last letter I got from the mom was saying that they have friends that live in my city.  Also she said she tried calling the phone number they gave her was disconnected, and to give her a call. (apparently the hospital gave my old house number instead of my cell like I requested...). I sent a letter back with the correct number, haven't heard anything since.  I did just have my 18 month post appointment, so thinking about writing them again giving an update.

[RichardMEL]

wow 18 months already? just seems like yesterday! I think this is great you are in contact and they seem to want to keep communicating. I guess it gives them a link to their loved one, and you can learn more about your donor.

 

[Sugarlump]

Decided today would be a good day to write and thank my donor family.
Three months on and kidney having a good spell, so now is probably a good time.
Went out  and chose a card, now sitting with the card, pen and paper in front of me but I can't seem to find the words.
How do I say a million thank yous and express the enormity of this gift ?

[carol1987]

Decided today would be a good day to write and thank my donor family.
Three months on and kidney having a good spell, so now is probably a good time.
Went out  and chose a card, now sitting with the card, pen and paper in front of me but I can't seem to find the words.
How do I say a million thank yous and express the enormity of this gift ?

My Kidney came from a living donor and it was had to get started... My TX Co-ordinator recommended that I just start writing... whatever you feel... you can edit later.   Once I started it just flowed...   there were lots of tears.. but it felt so great to express my thanks!!
 

[Sugarlump]

It's made me really sad trying to write this letter and now I'm in tears ...your feelings about the donor, the gift of life, the struggles with the kidney
and my inability to relax and be positive this one's going to work out are all tied up together.
Plus how do you equate the drama,excitement and fear of THAT phonecall with the end of someone else's life and a family's grief.

Thanks for sharing that comment Carol.

[carol1987]

Sugarlump...  having a deceased donor would make it so much harder... 

In my talks with my TX co-ordinator she mentioned that in a letter to a deceased donor.. first and foremost you express your sympathies and she also mentioned that you should not go  on too much about your struggles.....
I know it was amazing all of the emotions that came to the surface when I began to write...

How are you feeling? 

[Sugarlump]

Very mixed feelings.
With my first transplant the donor family made contact straight away and it was easier to respond until the kidney failed and I found it difficult to continue contact. What can you say when their precious gift has failed. You feel tremendously guilty.
With this transplant, I so want to thank them before it's too late, in case it happens again. So I want to initiate contact now. It's difficult to perceive how the donor's families feel about their letters ? I've emailed my Transplant Co-ordinator to ask her opinion/advice.
I suppose, for initial contact I could just say something along the lines of really sorry for your loss and thank you for the special gift of a kidney. But that seems very impersonal. Would they not want to know something more personal to where the kidney has ended up/ with whom/ how important it is to you/ how it's changed your life??? How I constantly think about my donor with affection?
It certainly brings a lot of emotional stuff up and makes you really think about the selfless act it is. I carried a donor card from the age of 16 but never gave it much thought beyond signing the card what it could mean, especially for my family. People never talk about the important stuff.

[willowtreewren]

I have been composing a letter to our donor family. This is what I have so far. I would value any input. Our coordinator has not given any suggestions except that we cannot include anything that would identify us.

Aleta

To the donor family of “our” kidney,

While I write this, I still mourn your loss. When I think of what your family has gone through, I can’t help but feel the tears well up in my eyes.

So I thought it might help you to know what your gift has meant to us.

Dialysis was a wonderful gift to us, too. It kept my husband alive. And we were (still are) extremely grateful to have had that option. We did dialysis at home 6 nights a week. It was like a second job. We worked ten hours a day on our regular job, then each night when we got home we started up the dialysis machine and began all the preparation for dialysis. Then I got dinner going. Once the machine was ready, we got my husband hooked up. It sounds simple. But it took us five weeks of intense training to learn how to do that. The hardest part was learning how to “cannulate,” which is a euphemism for sticking two huge needles into my husband’s arm. As soon as his treatment started, I served my husband dinner while I ate at the table. Oh, the planning I did to have dinners that could “hold” while we finished getting him hooked up. There were many nights that the meat was dry (or sometimes even burned). But those four plus hours each night kept him healthy and able to continue working.

Every half hour during the treatment I had to take blood pressure readings and readings from the machine that showed the pressure for both the venous and arterial access points. And if there was an alarm, I had to take care of that. We found that most alarms were caused by user error on Thursday or Friday nights when we were both very tired from the long week. When our treatment was over we went right to bed in order to be able to get up the next morning for work. Day after day, week after week, month after month. And then into years.

We were lucky. Not everyone does well on dialysis or is able to work. We were prepared to keep on with that schedule because it meant health and even life for my husband.

Let me tell you about traveling. We were still able to do that. It only meant planning far enough in advance that we could have the cases and cases of dialysis supplies shipped to our destination. It meant packing up the machine and all the other peripherals. It also meant that without a comfortable chair, my husband had to sit in something not designed for hours of being stationary. And it meant that wherever we went, we had to complete the travel in one day. We could not miss more than one day at a time of dialysis. So, when visiting our daughter and her family, we had to do the 15-hour drive all at once. It’s amazing what we could do when we had to. Like setting up all that equipment in another house that isn’t really dialysis ready. Or watching a granddaughter tape straws to her stuffed animals to give them treatments, just like granddad had.

Your gift has changed our lives more than you can know. The first simple pleasure that we realized was sitting down at the dinner table to enjoy a meal together. I sometimes think of the special “stranger” who is there with us for meals – your son. Another pleasure is that before dinner (or after as the days get longer) we can go outside and take a walk. Until your gift, there wasn’t time for that pleasure. As the weather warms and the grass begins to grow, we can do yard work in the evenings instead of having to fit any chores into a too-short weekend. When friends talk about the movies they have seen we won’t have to apologize about not having the time to go to the movies. When we have to attend meetings in the evenings, we will not have to juggle our dialysis schedule to allow us to do so. We can have friends over for dinner! Not many have wanted to share time with us while my husband had his blood cleaned.

Looking toward this new future, there is the knowledge that we can once again go camping, something we used to enjoy, but couldn’t easily arrange with the time constraints of dialysis. Camping was always a balm to my soul - something that we had learned to live without.

In short, we can lead a “normal” life with work, family, friends, and even recreation.

Your son’s kidney has a home where it will be well cared for and lead a full life. It is already doing its job and we will cherish it for many, many years. I hope you can take some comfort in knowing that through your gift, a part of your son lives on. Thank you for giving my husband his full life back.

We are forever in your debt.

 

[Sugarlump]

Your letter was very moving and made me realise probably how important it is for the donor family to understand who their gift is helping and to perhaps feel part of that continuing life. Your letter breathes hope into a sad situation. The only comment I would make is, as I see you only had your transplant in Feb it may be a little early to send it. I guess it depends on the family situation and only the TC will know that.
I call my kidney Sidney and talk to her regularly and think of the donor family as Sidney's family, almost as if Sidney is a separate entity to me. I don't know how ready a donor family would be to hear that! I think about the donor a lot too, and her generosity in wanting to be a donor. It's a very difficult thing to put across in a letter.
Thanks for sharing your letter x

[willowtreewren]

Sugar, I appreciate your comment about the timing of the letter. Carl goes in for his next labs next Monday (it will have been 2 weeks since his last ones!). I kind of wanted to have this letter ready to go by then, because I know that the donor family must be really struggling. It was a young man who committed suicide. I was thinking that they should get some solace sooner rather than later.

And if this letter is received positively, I plan to keep them updated on how their son's kidney is doing fairly regularly.

Since Carl is already VERY healthy, and the transplant team is also very confident about how well he will tolerate this kidney, I am taking an optimistic leap that this kidney will be part of our lives for a long time.

 

Aleta

[Sugarlump]

Carl is doing very well  for 4 weeks. I was still in hospital at 3 weeks only just starting to feel well now at 3 months!
He must have the constitution of an ox

[RichardMEL]

Thanks for all the comments here. I have been thinking about what to write myself trying to help a friend out.

I have always imagined I would wait till the six month timeframe - both for me to get stable enough and also for a bit of time to have passed for the donor family to start the healing process and that a reminder like that, even a positive one, may not be so difficult for them to handle. (that's just my personal view, not trying to say that anyone who writes earlier or later is wrong somehow - everyone's different and there's no "right" answers or protocol here).

ANyway I was thinking about expressing sadness for the loss of their loved one. I can't shake the feeling that altrhough it is very important to express this feeling, because it's true and honest, it also seems a tad hypocritical somehow (maybe that isn't the right word??) - I mean if they didn't suffer their loss, I wouldn't be writing to them. Of course it's not like I have wished ill to my donor in particular or anything like that, but you can imagine someone reading that who is grieving a lost one might think it's a bit self serving somehow. Or am I just being too sensitive about it?

When I think about what to write I try to put myself in their shoes and how they might feel reading it. I mean I don't want to go on about my problems or sruggles - they've lost someone special to them - I would want to make the focus on the positive aspects and just how special that gift is to me and how I want to honour the memory of their loved one by making the most of this special gift, and somehow keeping a part of that person alive within me.

When I actually tried to write the genesis of a letter what I ended up with was so pathetic I'd be embarassed to send it.

This is not easy!!!!

[Sugarlump]

I actually feel distraught that someone had to die for me to get a kidney and find it difficult to come to terms with.
It physically makes me cry, still.
That's not hypocritical (and I'm not having a go at you here  ) I think it's the difference in how females and males feel emotion.
All I can go on is my previous donor family from 1st transplant seemed to really need contact.

[jbeany]

Richard, I think I killed a tree or two tossing rough drafts of my first letter.

I wrote back to my donor's mom, (read my previous posts on this thread for the long messy saga) and did what I had planned - a short "Thinking of you and doing really well at school and with my volunteering."  Unfortunately, hearing the Gift of Life organizer tell me "She's really having a hard time right now and just wanted to reach out." just makes me feel like she needs more than I'm capable of giving.  I'm still knee-deep in recovering, dealing with the on-going surgical mess, and stressed to the limit with school work.  I don't think at this point I'm ready to have a closer relationship with her.

[RichardMEL]

I think the above two posts underline (for me, anyway) just how different everyone is, and there's no way we can know how the person/people at the other end are feeling and will react. So I suppose the best thing to do, initially, is to keep it short (and sweet?) and then let them make the next move in terms of contact - that way IF they respond you might get a better idea of the best way to approach future communication(if any) from the tone and nature of what they write. I mean if they write back and say want to know more about how you're living, or what you've been through that's obvious, but say they write back and just say "thank you for your letter" that's kind of grey, but doesn't seem to open any doors to write more.

All I know is that WHEn I write I would like to get across just what the precious gift means to me in terms of my life and that I do not want their loved one's gesture to donate to go unrecognised or unappreciated, and want them to know that (and remembe it may have even been the person reading the letter who made the final decision to donate).

Maybe I should start working seriously on the letter now and it might be in a state I feel is acceptable in 3 months time!!

[willowtreewren]

Jbeany,
I've already done considerable working of my letter (you all got the first rough draft). But I saved the trees by doing it on my computer.... 

I'm so sorry that your life is full of stress right now. 

There has been so much wisdom in the posts from everyone here. I really appreciate that.

And Sugarlump, I really understand about how distraught you are feeling. It seems unfair that our good fortune has come from another family's tragedy. So I an determined to honor that lost life the best way possible. You should, too.

 

Aleta

[Sugarlump]

I will try.
Don't know if I'm up to that ...yet ...but I'll keep on trying.
Like they say, What doesn't kill you, makes you stronger.

Going to work on my letter over the weekend. Have a fair idea of what I want to say now.
Doing it by old-fashioned method of pen and paper (But its recycled paper  )

[paris]

@ Richard, for some reason, I thought the 6 month mark was a good time for me.  We got through the holidays, I feel more confident now than 3 months ago.  I was so emotional the first few months, that my letter would not have said what I wanted to say.   Plus, since the creatinine wasn't stable and then finding out the FSGS has effected the kidney  -- well, I needed to get myself in a good spot.  So, I am working on the letter. Trying to keep it simple and sincere.  But truly, how do you ever thank anyone enough for the best gift you'll ever get and it was from a stranger? 

@Willowtreewren,  I am surprised they told you anything about the donor.  I have always been told that they will not give any information.  The only thing I know is the donor had high blood pressure and they needed to give me that info so I could make an informed decision.   I did ask my family not to search the papers, etc looking at the obits.  I don't know how I would have handled knowing it was a young person or a suicide.  I think for me, it is ok not to know for now.  Someday.   

Great thread.

[Brightsky69]

When I went in for my transplant I asked all kinds of questions about my donor. At the time they called me for the transplant I think my donor was still living. They said she was scheduled for surgery at 6pm that evening. But a few hours later they called me to come in to the hospital. They said she was 48 years old and had passed from a brain aneurysm. And that she had just started treatment for high blood pressure.
Strangly enough after my transplant my high blood pressure went away. I haven't been on BP medication since the transplant. And with my 1st transplant I still had high blood pressure. 

[Sugarlump]

My transplant coordinator sent me a list of suggestions:-
Use your first name only
Mention your family or friends
Write about how your lifestyle was affected by organ failure
Say how long you waited for a transplant
Explain the health benefits of the transplant
Show how much this means to you and your family
You may wish to thank you donor's family for the unique gift they have given you
Keep language simple and sincere
Be aware that the donor family freely decided to donate their loved one's organs to benefit others
Forward to Transplant coordinator and remember it may take weeks or months for replies.
Most families are extremely grateful to receive a letter.

Ok here goes ...

[Sugarlump]

Finished my letter today put it with a card and posted it to my transplant coordinator.
I hope I get a response at some point.

[willowtreewren]

I'm taking mine in tomorrow. 

I, too, hope to get some response.

[maymay delmont]

i had a kidney tranceplant , in Aug of 2008, I've been trying to Wright a letter to the donor family , but I'm just not sure what to say . besides Ty for this wonderful gift u have given me . how can i put it in words , other then putting it that way ?