I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Jess21 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!!!!!
-
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.
-
That's so sweet Jess. I would love to hear more.
-
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;
-
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.
-
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;
-
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;
-
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.
-
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
-
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;
-
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.
-
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.
-
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.
-
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
-
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.
-
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.
-
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.
-
Here's my first effort.
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.
-
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.
-
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!
-
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.
-
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?
-
Yes, she said she wanted further contact to show me more pictures and videos.
-
Thanks for the feedback. Will send it tomorrow.
-
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.
-
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?
-
:clap; :clap; :clap; :clap; :clap;
-
:) Beautiful letter JB! :-*
-
JBeany, your words are beautiful. Just perfect. :cuddle;
-
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 :clap;
-
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!
-
:grouphug; This is a great thread.
-
Beautiful letter from both perspectives...donor family member and recipient.
-
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...
-
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.
-
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?
-
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.
-
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
-
How cool is that?! I'm so happy for you and your transplant!
-
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."
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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 :twocents;
-
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.
-
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.
-
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.
-
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.
-
Jbenay... that is odd... I think your idea of a simple thinking of you card is a good idea....
-
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.
-
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.
:2thumbsup; :2thumbsup; :2thumbsup; :bow; :bow; :bow;
-
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 ?
-
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!!
:cuddle;
-
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.
-
Sugarlump... having a deceased donor would make it so much harder... :cuddle;
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?
-
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.
-
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.
-
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
-
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.
:flower;
Aleta
-
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 :)
-
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!!!!
-
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.
-
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.
-
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!!
-
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.... :rofl;
I'm so sorry that your life is full of stress right now. :cuddle;
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.
:grouphug;
Aleta
-
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 :))
-
@ 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. :2thumbsup;
-
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. :waiting;
-
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 ...
-
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.
-
I'm taking mine in tomorrow. :cuddle;
I, too, hope to get some response.
-
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 ?
-
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 ?
Welcome to the club. Sugarlump's post right above yours had some good ideas.
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.
I talked about what was different in my life after, and how the improved health was improving things for me and for my friends and family. In my second one, I talked about having the energy to volunteer and help others as well.
It's the Wizard of Oz theory - Say thank you, and then add in the "Because, because, because" part.
-
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 ?
Hi, MayMay,
Could you please go to the Introductions and introduce yourself? :cheer:
I notice this is your first post in IHD. It's nice to have you (and my daughter's name is Meagan!)