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CJ
Member
Username: Still_standing

Post Number: 7
Registered: 11-2008
Posted on Tuesday, December 02, 2008 - 09:59 am:   Edit Post Delete Post Print Post

I had my liver transplant on March 1st of this year. I sent a letter to my donor's family last summer. Like many others I struggled with finding the right words to thank them. I know my donor was 22 and that he/she lived somewhere in PA 45 minutes from Georgetown by helicopter. I don't know if my donor was a male or female.

I received conflicting advice from my family regarding writing them. At the end of the day I made my own decision. How could I not thank these people for making a decision that saved my life? I haven't heard from them and don't know if I will. I am sure they are still dealing with their devastating loss. I've read many stories from people who did and did not hear back from their donor families. I've also read sometimes the letters don't get to the family. I can only pray that didn't happen in my case. I was told that PA procurement is very good about getting the letter to the family.

Please share with me how many times you contacted your donor family.I don't wish to bring them pain. I have sent the one letter thanking them. It took me a while to write it. I worked on it and then left it alone for a while until I felt it said what I wanted it too. My gut feeling is to leave them alone for the time being. Let them get through the first year and maybe send one more letter next summer.

I don't know anything about them other than they lost their child very young. It really shook me up when I heard the age of my donor. I have nieces and nephews that age. I can't begin to imagine losing a family member that young. I wanted them to know how grateful I am to them but I don't wish to be a painful reminder of what they have lost.

I would really appreciate your input as to when and if I should send another letter to them.

CJ
CJ
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 1494
Registered: 02-2008
Posted on Tuesday, December 02, 2008 - 10:30 am:   Edit Post Delete Post Print Post

CJ, I will try to persuade our wonderful Donor Mom Janet to drop onto this thread and give you some straight shootin' advice about your letter to your donor family. She lost her teenage son back in 1994. Please watch for her reply. OK?

Ol' Bob
Bob
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
CJ
Member
Username: Still_standing

Post Number: 8
Registered: 11-2008
Posted on Tuesday, December 02, 2008 - 10:49 am:   Edit Post Delete Post Print Post

Ol' Bob,

Thank you!! I really appreciate it.

CJ
CJ
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 1495
Registered: 02-2008
Posted on Tuesday, December 02, 2008 - 11:10 am:   Edit Post Delete Post Print Post

CJ, I live in Texas and my heart donor lived in Florida. I wrote several letters to my donor's family for awhile with no response. I'm planning to try again very soon, even though it has been almost 18yrs since my transplant. Hopefully I will hear from them this time.

Please wish me luck. Thanks

Ol' Bob
Bob
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
BreathinSteven
Member
Username: Breathinsteven

Post Number: 1377
Registered: 11-2004
Posted on Tuesday, December 02, 2008 - 11:51 am:   Edit Post Delete Post Print Post

Hey CJ...

I'm so glad you made the decision to write your donor family, regardless what some of your family might have said... I agree with your sentiment -- I think that it is our responsibility to thank these precious families and let them know that their loved one, and they have helped someone live...

I believe that, in general, the procurement staffs, transplant centers, OPO staffs, and anyone involved in passing letters between recipients and donor family members are very good at what they do -- if you ever speak to them, you realize that these letters are beyond gold in their eyes... They handle these communications with the reverence they deserve... If donor families (or recipients) have moved, or letters are rejected as "return to sender" -- the party sending the letter is generally informed... I'd be relatively certain that your letter was successfully sent... You can also contact your procurement department, or the OPO and ask if they know whether the letter was successfully sent to the donor family -- they should likely be able to tell you...

And I do know what you mean about struggling to write -- it was the most difficult, and most meaningful letter I've ever written... I still use parts of mine whenever I speak to groups -- got to do it twice yesterday!

As to your question -- it may be a little soon for an answer -- and you also know that an answer may never be coming... We send a "thank you" letter -- but there is really no need or obligation for a response... However, your donor was young and sometimes family of younger donors have a greater desire to learn about the people they helped so we can hope for that... My donor was 17 -- not very far in life from your donor...

I sent my first letter about 5 months after my transplant (I have a copy of it on my website, posted with permission from my donor's family...) I did not receive a response from them for about 14-15 months after my letter to them -- I heard from Kari's family about 19-20 months after my transplant -- after she passed away... They apologized (as if that was necessary...) and told me they appreciated my letter, but had been on an emotional rollercoaster and just needed time before they responded... (Their first letter is also on my website...)

I believe that, if I hadn't heard from them when I did -- within a few months I would have written another letter telling them how I was doing, and how my life had changed... I'm glad I did hear from them -- and I hope you hear from your donor family...

Your still pretty fresh in your experience - it's really only been 4-5 months since you wrote your first letter... We all worry about the possibility of hurting our donor families -- I've known mine for almost 7 years and I still worry... I would think about holding off and maybe writing them again around your anniversary, March 1st... It's the anniversary of your "rebirth" -- but it's also the anniversary of their loss and that can be a very difficult time...

Hopefully, Bob will be able to give Janet a holler to drop her two-bits in here too... I know that donor family members hurt deeply -- but I also know that it can be very important to them to know that others are thinking about their loved one -- and we think about them constantly...

You take care...

Love,

Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

http://www.youtube.com/watch?v=SvxpyfZ9Rsk
Janet
Member
Username: Jan

Post Number: 157
Registered: 05-2003
Posted on Tuesday, December 02, 2008 - 12:22 pm:   Edit Post Delete Post Print Post

CJ, Just wanted to drop a line and tell you that I need to get to work right now...but later this evening I will certainly give you my thoughts as a donor mom, on what I would want....not all are the same, so you are right...in the end, you decide to do what is right for you....looking forward to 'chatting' with you this evening. And if you ever want to chat, I have a couple of different instant messengers, and we could do that also, maybe it would be easier to answer your questions in that way??

Let me know.
Hugs, Janet
Mom to Joe
6-1-80 / 8-21-94
http://www.childreninheaven.netfirms.com/joekeller.htm
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 1496
Registered: 02-2008
Posted on Tuesday, December 02, 2008 - 03:09 pm:   Edit Post Delete Post Print Post

Hey Janet,
Thanks for coming aboard on this discussion. I knew that you would have some wonderful input about some donor families' feelings.

Love ya'

Ol' Bob
Bob
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
CJ
Member
Username: Still_standing

Post Number: 9
Registered: 11-2008
Posted on Tuesday, December 02, 2008 - 03:09 pm:   Edit Post Delete Post Print Post

Thanks to all of you this is something that really bothers me. I just don't want to cause more hurt and this is still so new.

Ol' Bob 18 years is a long time. I'm glad you are still writing. I will be praying you hear from your donor's family. Thanks for sending Janet my way!

BreathinSteven I will be checking out your web site tonight when I get home. Thanks for you input. I don't want to send the wrong message my family wasn't against me writing to say thank you. I think some of them were more concerned for the family of the donor as well as my emotional state. I plan to post my story the short version is unlike most of you guys I got sick quickly. I didn't have a wait at all because I wasn't accurately diagnosed until I was at end stage liver disease. I had encephilopathy before we had a clue what that was. It took a while for my head to clear after transplant because of the ammonia that went to my brain prior to it. There was also concern for my donor's family because of their loss. We lost my Dad three months after my surgery so the thought of the pain of my donor's family's loss is something we are all a little more aware of.

I thought I should wait until a little past my year. My rebirth celebration is also the year mark of their loss. I'm really conflicted about it. I'm strongly leaning towards waiting until a few months past my year anniversary.

Janet I would love to chat with you. Forgive my lack of experience here this is the only forum I have joined. I know at 41 you would think I had done this before. I don't have an im but you could e-mail me at cmetzger21@verizon.net. I hope it is alright to post my e-mail address here. I'd love to hear your thoughts Janet!
CJ
Janet
Member
Username: Jan

Post Number: 158
Registered: 05-2003
Posted on Tuesday, December 02, 2008 - 10:58 pm:   Edit Post Delete Post Print Post

Steve....thank you so much for doing all that you do to promote organ donation....it is my goal in life to make sure that nobody has to endure the pain of making that decision in a hospital room like our family did.....it is so much easier to discuss it around the dinner table. And so much 'easier' if you should ever need to use that information one day. I almost made an awful mistake by saying No to donation...Joe's story is in the files here if anyone would like to read it.
AGAIN Thank you for doing what you are doing....it means so much to us donor families as well as the recipients out there on the waiting list.
Hugs, Janet
Mom to Joe
6-1-80 / 8-21-94
http://www.childreninheaven.netfirms.com/joekeller.htm
Janet
Member
Username: Jan

Post Number: 159
Registered: 05-2003
Posted on Tuesday, December 02, 2008 - 11:33 pm:   Edit Post Delete Post Print Post

CJ...THANK YOU For being such a wonderful and thoughtful man. I have met many recipients over the years...but have never met Joe's recipients...I have often said that if they are half as wonderful as all of the people I have met, then they are great people. I would love to meet Joe's recipients, but somehow, I don't think that will ever happen, unless it is by accident. I have written to them several times...and one of them has written to us. The kidney recipient from the Philadelphia area...a school teacher. That is about all we know about him, but he has written more than twice to us, we just never received any more than that.

We have the 'feeling' that the center where he was transplanted, they don't agree with forwarding the letters to donor families and vice versa...I only say this, because we have been told from other recipients from this hospital that this is their thoughts on the subject. They have a job to do and it doesn't include delivering mail. But I am sure they are in the minority when it comes to that. And at least two of Joe's organs went to this same transplant center. And maybe three. So, we just don't really expect any more letters from any of them.

The teacher in the two letters that we did receive, begged us to write back to him right away....which we did, but apparently they were never received. So, the half a dozen times I have written, they have not replied to. So, you just never know what you are dealing with when you are sending things through the transplant center. If you need some help with the Gift of Life Donor Program....if that is who the OPO was, let me know. I do many things for them, and have quite a few very good friends there that I could probably get you in touch with, that could help you to make sure the letters do get to the donor family. You can by pass the transplant center, if you know who the OPO was. And sometimes this is a good thing. I just hope that your transplant center is not the same one that I am talking about. And I hope that in the 14 years since Joe's death, they might have some newer doctors that agree more with the correspondence than they used to. We met one of the transplant surgeons at one time just a few years after Joe's death, and asked if we could volunteer at the center with recipients, to talk to them about things such as the letters, etc. And we were given a flat out NO, we don't need your help, nor want your help. They were very rude. Dave was completely appaulled by the way they acted.

But anyway...back to you.....if you feel the need to send a note, a card, etc. Please do. There is nothing more meaningful to me that hearing from one of the many recipients that I know, especially on a very meaningful day. Bob has surprised me several times by calling at the 'perfect' moment, as if Joe told him that I needed a little attention, and there he was on the phone...bless you Bob for all you do for so many.

If the donor family decided to not correspond to you, you will be notified of that. So, no news is good news. If they decide they don't want to hear from you, then you will receive a letter from the OPO letting you know that. But, until that would happen, I would continue to send a note every now and again, once a year, or less if that is what works for you. I would love to hear when the recipients are having a good year, had a new child/grandchild, etc. Nothing would mean more to me than to know that person is still alive because of my son's gift to them, and that they are living life to the fullest....even if it isn't perfect...it is just nice to know they care and think about your child.

A parent's worst fear is that their child is going to be forgotten. That is the one thing you should remember if you are dealing with parents. And some do not want to know anything.....just that in their loved ones final hours they gave a gift that will keep giving for many years.....and that is all they need to know...we are all different. But knowing most donor families....they love to hear your news.

Huge Hugs to you!!!! Hope this helped...and if you want to email me personally, I would be glad to chat with you further.... jd292@comcast.net
Hugs, Janet
Mom to Joe
6-1-80 / 8-21-94
http://www.childreninheaven.netfirms.com/joekeller.htm
BreathinSteven
Member
Username: Breathinsteven

Post Number: 1379
Registered: 11-2004
Posted on Wednesday, December 03, 2008 - 08:43 am:   Edit Post Delete Post Print Post

Hey Janet...

What you wrote to CJ is beautiful... And what you wrote to me means so much to me...



I do what I do to tell people about the Joe's and the Kari's of the world -- and tell people about their families... To tell about the gifts they've given to people like me & CJ & Bob & Risa and so many people here...

Part of my reason for speaking and "spreading the word" is a little selfish -- I want everybody to know who she was, how she felt, and what she did -- I want everyone to know her smile and her spirit -- I want people to see Kari's smile, and Joe's smile -- and remember them forever...

I also hope that when people understand that Kari is my hero, and Joe is a hero to many -- and they understand that I think of her throughout the day, every single day -- and there are people who think of Joe throughout the day, every day, whether they know him or not... I hope that when people think about how we feel about our donors and donor families -- it plants a little seed in their mind, and in their hearts, that they too would like to do that for someone when they leave this world...

You take care Janet, mom to Joe -- thanks for being here and helping guide others when we need it...

Love,

Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

http://www.youtube.com/watch?v=SvxpyfZ9Rsk
CJ
Member
Username: Still_standing

Post Number: 10
Registered: 11-2008
Posted on Wednesday, December 03, 2008 - 12:28 pm:   Edit Post Delete Post Print Post

Janet,

I thought I should start with I'm a woman not a man.

You as well as Steve and Ol' Bob and so many others here are such a wonderful group of people.

I want to thank you for your input it helps me greatly with perspective.

Quite frankly I'm appalled that you were treated the way you were by that surgeon. That is ridiculous without families like yours who choose to make that difficult decision we would never receive the organs we need. What he should have said was thank you and we would love your help. He may have the expertise to do the surgery that people desperately need but he must have never had a conversation with a transplant recipient afterwards. The one thing that stays with me every day of my life is the extreme generosity of my donor and their family. I guarantee you every person who has every received a life saving transplant feels the same way.

My transplant center was Georgetown University Hospital. They were very supportive of me contacting my donor. I discussed it with my Physicians assistant as well as my Nurse Practitioner and both encouraged me too write to thank my donor family. Georgetown put me in touch with my OPO which is the Washington DC area regional OPO. I inquired about the process of the letter being delivered and they told me that the OPO they forwarded it to (Pennsylvania OPO) is very dependable. So for now I've sent my first thank you letter. I am a little under three months from my one year anniversary. I'm going to wait until a few months after my anniversary to write to them again as that is a difficult time for them I'm sure.

I can tell you this my donor will never be forgotten by me or my family.

I'm blown away by your incredible generosity in helping spread the word of the need for donors. I hope the center you used has come a long way since then. I'm so sorry they are not helpful with the letters.

Thanks to all of you and I will fill you in when I send my next letter.

CJ
CJ
Janet
Member
Username: Jan

Post Number: 161
Registered: 05-2003
Posted on Thursday, December 04, 2008 - 10:49 pm:   Edit Post Delete Post Print Post

Steve, THank you for sharing Joe's picture with all. It was lovely to bring up this thread and find his smiling face in front of me.....well.....sort of smiling face....this is by far one of my favorite pictures of Joe...I got it the day of his viewing. His coach had not gotten around to delivering them to us, so he brought them to the service. The picture is so real....for 1994 it was...and still is. When I look at Joe in this picture, it is as if you can look into those beautiful eyes of his and be able to see deep down to his soul.....and vice versa....so this one is the one I usually use...because of that. And no digital pics back then...so, I really need to scan a few more so that I have a few more of him...Plus, he was doing what he loved in this picture....playing baseball~~!!
Thank you again for all your kind words, you are a kind soul, and I appreciate your sweet words. I will never tire of telling people about Joe and organ donation.....it is a passion of mine since his death. I do have to admit that my main goal when I speak is NOT to 'talk people into donation' but more to encourage them to TALK ABOUT IT.... and then the hope that what Joe did touched the hearts of so many of them that donating will just come natural after they have that discussion. So, I kind of go about it in a different way than most do...but I can tell you that it works....I know at least one young girl decided to be a donor after we talked at her school one day, and went home to share it with her family.......around the dinner table like I asked her to. Quite a few year later, I met this mom...the daughter had died in a car accident about a year after our talk. Her parents found it 'easy' to donate, knowing that their daughter has wanted to. I wish they had NEVER needed to use that information....but so glad that they remembered it when it was needed. I guess we will never really know how many of us really make a difference at all. I would never have known that the young girl's mom had not shown up at a Compassionate Friends Meeting one night, and after talking, we put two and two together and realized it was me that spoke that day at the school....it is one that we visit at least twice a year to share organ donation with. So, never underestimate your power when you are sharing your story.....it will continue to help people to make the right choice.
Hugs, Janet
Mom to Joe
6-1-80 / 8-21-94
http://www.childreninheaven.netfirms.com/joekeller.htm
Janet
Member
Username: Jan

Post Number: 162
Registered: 05-2003
Posted on Thursday, December 04, 2008 - 10:59 pm:   Edit Post Delete Post Print Post

CJ.....don't want to take up all the space here on the site...but wanted to thank you also for your sweet and kind words....and sorry that I thought you were a guy....I am so sorry. You spoke so eloquently, but then again, so does Steve, and Bob, so how would I know??

I am guessing that the OPO that they went through was The Gift of Life Donor Program. The other one in PA is CORE....and I don't know how they are, but GOLDP is the best when it comes to helping donor families and recipients. You couldn't ask for better people than the people who work there. And if you ever need to contact any of them...I can give you a few names. But, for now...you are doing everything perfectly! If you go with your gut feelings, you will do just fine. And like I said, never give up hope, unless, they say they do not want you to contact them anymore. I pretty much got that message from Joe's liver recipient the last time I inquired about how they were doing....that he really didn't want to be in contact with us. So, we have left it go. I hoped that when we went to Pittsburgh this past year for the Transplant games that we would get to meet Joe's liver recipient, but that didn't happen..(he is from the Pittsburgh area)...but we got to meet a wonderful young man who had a liver transplant and he asked me to 'hang his medal' on him....and that meant the world to me...so, I got to meet a 'new liver recipient', just not Joe's. And that is ok with us now...in the beginning it wasn't ok with us, but now we are able to handle the choice they made.

It has been wonderful getting to know you a little better here on the site...and please do keep us posted on what you hear, and if you hear from the family. It really is a rewarding experience to meet any donor family, or recipient...they are the best. I wish I had such a great outlook on life as most of the recipients on this site do. It helps me so much just to hear of the daily ups and downs here, and what all of you think about.........which is usually your wonderful donors....THANK YOU from the bottom of my son's "Heart of Gold".....
Hugs, Janet
Mom to Joe
6-1-80 / 8-21-94
http://www.childreninheaven.netfirms.com/joekeller.htm
BeBe Gul
Member
Username: Bebe_gul

Post Number: 8
Registered: 07-2008
Posted on Sunday, December 14, 2008 - 01:18 pm:   Edit Post Delete Post Print Post

Dear all,

BeBe gull who was kidney transplant patient for the last 8 years, passed away on 30th November 2008, Sunday morning 10:00am. She was very strong lady and she faced and fought her illness bravely for the last 20 years. She was on dialysis for 8 years prior to her transplant.

She always accepted her illness and use to be clam on God’s will. She use to say that never be afraid of such illness for which treatment is available.
I am her only son writing this to you all. As a son i always helped her and did my best to take care of her in difficult period of her life she was passing through. I always made sure she visits her doctor and get best treatment and give her emotional support.

My message to all the transplant patients’ families’ members is to accept what we are passing though, I know it’s very hard test we have been put to but remember God test those who he loves.
Pray for my Mother Soul.
nana
Member
Username: Nana

Post Number: 3
Registered: 12-2008
Posted on Monday, December 15, 2008 - 04:48 pm:   Edit Post Delete Post Print Post

I tried to reach my donor family six years ago but they never responded. Now its 10 years and I want to write again but I dont want to hurt them.
nn
Janet
Member
Username: Jan

Post Number: 170
Registered: 05-2003
Posted on Monday, December 15, 2008 - 07:26 pm:   Edit Post Delete Post Print Post

Nana, What a beautiful idea....nothing would mean more to me as a donor mom than hearing that one of my son's organs were still alive and doing fine.
Hugs, Janet
Mom to Joe
6-1-80 / 8-21-94
http://www.childreninheaven.netfirms.com/joekeller.htm
CJ
Member
Username: Still_standing

Post Number: 14
Registered: 11-2008
Posted on Monday, December 15, 2008 - 09:01 pm:   Edit Post Delete Post Print Post

Nana,

As you have read I tried to reach my donor family. I think for some people it takes time. It's been almost 10 years so their loss is not so fresh. I would send them a letter or a card whatever you are comfortable with.

Janet made me feel much better about the decision to contact my donor's family. I have not heard back but from what I understand most people don't in the beginning sometime we never do. I have the exact same reservations I don't want to hurt them. I also could not possibly not thank them for what they did for me. I think it woudn't hurt to try writing them.

Good luck to you please let us know how it goes.

CJ
CJ
Janet
Member
Username: Jan

Post Number: 172
Registered: 05-2003
Posted on Wednesday, December 17, 2008 - 12:34 am:   Edit Post Delete Post Print Post

CJ, I am glad that I was able to be of some help....THANKS...
Hugs, Janet
Mom to Joe
6-1-80 / 8-21-94
http://www.childreninheaven.netfirms.com/joekeller.htm
Meagan
Member
Username: Newheart14

Post Number: 37
Registered: 01-2009
Posted on Tuesday, February 03, 2009 - 10:45 am:   Edit Post Delete Post Print Post

Hi everyone,

I have a question for you. I have written my donor family a couple of times. Once after the transplant, and again at Christmas. I have a goosebumpy story. I sent off my Christmas letter and card to my Coordinator. All letters to donor families have to go that route for approval and then they forward it on. I got a call from my Coordinator saying that she received my letter at the exact same time as a letter from the donor family to me. I could not believe it. I have never stopped thinking about my donor and his family. We knew he was very young and this bothered me no end, and still does.

It turned out to be a very touching letter from the donor mother, who told me a little about her son. We know it was a young boy, probably high school, because she mentioned that he had won all kinds of awards in math and science and was also a very accomplished athlete. He loved life and had many friends. He had wit and humour (sorry Canadian spelling). I think I inherited his love of life and I love to laugh.

They are very strict in Canada about maintaining donor confidentiality. So there will never be a chance that we would meet through our letters to each other. However, my Coordinator said that they have no control over what goes on over the internet. At the moment I would not want to meet her because of the liver problem I am currently having. I would not want her to know her son’s organs are not totally perfect. But I do so want to take her hand one day and put it over my heart so she can hear her son’s heart beating. I feel guilty that the liver is having some problems because I promised pre-transplant that should I be blessed enough to receive these organs I would take very good care of them. I know what you all will say, that I should not feel that way, that it’s not my fault, but that’s how I feel. I feel so bad this young fellow had to die, but I know if he didn’t I would not be here. His family gave me the greatest gift I could ever expect to receive. All of you donor families out there are wonderful.

I have never stopped thinking about my donor mother. Not a day goes by that I don't think of her and the rest of my donor's family. I know some of you will say I should quit that, but I just can’t right now. Before Christmas I got extremely upset thinking of her going through Christmas without her little boy.

Anyway, I have gotten off track, something you will learn that I have a bad habit doing. I tend to yammer on and on without getting to the point.

Now the first year anniversary is coming up. Do you all think I would be causing my donor mom and family more hurt and pain if I was to write to them again? I wanted to send one of those angels on my shoulder pins. I am into angels big time. The last thing I would want is to stir up bad memories for her. What do you all think?

Boy is this ever long .. sorry guys.

Love, Meagan
Heart and Liver Transplant - February 14, 2008
TGH, Toronto, Canada
CJ
Member
Username: Still_standing

Post Number: 60
Registered: 11-2008
Posted on Tuesday, February 03, 2009 - 11:19 am:   Edit Post Delete Post Print Post

Meagan,

I think if you want to contact them on your anniversary you should. The fact that they have already been in touch with you in my opinion is a good sign that they want to know how you are doing. You know it's not your fault you are having issues with your liver. You are not letting anyone down it's just an unfortunate part of transplant that sometimes things may get challenging. You shouldn't blame yourself for things you have no control over.

I don't know much about my donor other than they were 22. I feel guilty sometimes too knowing someone almost half my age didn't get to live the rest of their life but that is something neither of us have control over. The only thing we can do is gratefully accept the gift they left us and do our best to take good care of it.

If you don't want them to know you are hitting a rough patch you don't have to mention it. Take care of yourself and try not to stress yourself out about things you can not change. Concentrate on doing whatever it is you need to do to get yourself healthy.

Good luck and please let us know how things go.

CJ
CJ
Liver Transplant
3/1/08
Maryland
Christena's Dad
Member
Username: Christenas_dad

Post Number: 84
Registered: 01-2009
Posted on Tuesday, February 03, 2009 - 03:09 pm:   Edit Post Delete Post Print Post

Meagan,

I, too, believe you should write your letter to the donor family. Your coordinator will let the family know you have written and they will be able to make the decision whether or not to accept it. I agree with CJ that the family at least initially wanted some information about you, and maybe now will want to know a little more about how you are getting on with your life. And I think your angel pin is a perfect gesture.

I'm not sure about the timing of the letter. This is your anniversary of a chance at a new life. This anniversary marks the passing of this mother's son. You may want to wait a little bit before sending the letter, or you may want to ask your coordinator. Maybe donor mom Janet could give a little insight about this.

And finally, like CJ wrote, you have nothing to feel guilty about over the issues you are having with the liver. The transplant experience is never easy and there are bumps in the road for everyone. I feel from your posts that you are exceedingly grateful for the second chance that you have been given, and that you will do all the right things in your power to make your transplant outcomes the best that you can.

Keep your chin up Meagan, and have a great day!
Christenas Dad
Father of Double Lung Recipient at St. Louis Childrens Hospital June 2005
Kentucky, USA
Christenas Journey is at www.geocities.com/debgabehart
Sarah's mom
Member
Username: Sarahs_mom

Post Number: 3
Registered: 02-2009
Posted on Wednesday, February 18, 2009 - 02:30 pm:   Edit Post Delete Post Print Post

From a donor mom's perspective, please write to the donor family. A few pieces of my daughter are still alive.....giving life to others. I want and need to know how those organs are doing! When you write to us...you aren't hurting us. We are already in pain because of our unfathomable loss. We crave any tidbit of information you can give us about the organ and about you. You are a connection to our lost beloved child! We need you!

picture
CJ
Member
Username: Still_standing

Post Number: 90
Registered: 11-2008
Posted on Wednesday, February 18, 2009 - 03:11 pm:   Edit Post Delete Post Print Post

Sarah's Mom:

Your daughter was beautiful. I'm very sorry for your loss.

I'm coming up on my year anniversary. I wrote my donor's family around 5 or 6 months after my transplant. I plan to write them again but not until May. My anniversary to celebrate is the anniversary of a painful loss for them.

I hope your daughters recipients are in touch with you. I know many of us really feel the need to thank our donor's family. Not everyone is able to handle contact with us. There is no greater gift than the chance to continue your life. What a kind and giving person your daughter must have been to do that for others.

I know that my donor family accepted my letter but I haven't heard from them. I am thinking that maybe they aren't ready yet it is too soon. I still plan to send them cards and letters occasionally to let them know how I am doing. I pray that some day I will hear from them. I really want to thank them in person.

CJ
CJ
Liver Transplant
3/1/08
Maryland
Meagan
Member
Username: Newheart14

Post Number: 38
Registered: 01-2009
Posted on Thursday, February 19, 2009 - 10:14 pm:   Edit Post Delete Post Print Post

I wrote my donor's mom. I had to. I just hope it helped her. Your daughter was so beautiful Sara's Mom. I'm so sorry for your loss. I just had my one year anniversary on Valentine's Day. Had it not been for my donor mom's generosity I would not be here.
Heart and Liver Transplant - February 14, 2008
TGH, Toronto, Canada
Diane
Member
Username: Mary_diane

Post Number: 25
Registered: 02-2009
Posted on Saturday, February 21, 2009 - 11:01 pm:   Edit Post Delete Post Print Post

I have been reading through all of the Forums on this Web site, and I am just totally blown away by the kindness and compassion that oozes out of each new posting.

I too think of my donor and his/her family daily and each night before I go to bed I have a little conversation with his/her spirit. As Meagan mentioned in Canada they are really strict around donor/recipient confidentiality. I will likely never know where my donor is from. I do know that because I was critically ill, I was put on the National list and my liver came from back east.

It has taken me 3 months to write a letter, and I echo the sentiments of those who say it is difficult. there are no words to express the depth of gratitude that we each feel, and yet putting things in words can sound so trite. I had the VERY strong urge to write a separate letter to my donor, who I know is no longer with his/her family, but part of that person is with me. I did write the letter and included it with the letter that I sent to the donor family. It was very hard because I didn't want to sound disrespectful of their needs. I wrote it and sat with it for 2 weeks until I was sure it reflected what I wanted to say.

So far I have not heard back, but I have only recently sent the letter, and they are still early in their own grieving process. Of course I have no idea who has been left behind...a wife? a husband? children? parents? likely many friends.

Unless I hear back from them, I believe that I will respect their silence, and at my 1 year anniversary I will again send a letter or card.

The day that I ended up in hospital with Dave sending emails out to friends and family letting them know what was happening with me, turned out to be the 2 year anniversary of my cousin's death from a ruptured aneuryism. I did not know it at the time, but on the day I had my surgery was the 2 year anniversary of harvesting of his organs for transplants. 2 coincidental dates!
Both of his sisters (my dear cousins) told me separately they were very upset about his organs being donated for transplant, and said they hoped that his heart went to someone nice and not a real jerk. They have never heard from his recipients, but 2 years later they were going through this process with me, and both found it to be a very healing experience around the loss of their brother. They both live back east, and are very active now in advocating for Transplant. It gives me the goosebumps to know how closely our dates aligned, and of course there is such sadness that I am alive and he is not.

I feel that it is my responsibility to live my life to the fullest both for my own sake and for respect to my donor and donor families everywhere. I am not sure how at this point, but I know I need to give back in some way. As I start feeling better, I am sure that will manifest itself organically.

Hopefully my donor's family found my letter helpful in their grieving process. In our country the letters go through the Transplant Clinics. We cannot indicate our name or which city/province we live in. But we can talk about our age, our lives, what we enjoy doing etc., just no identifying remarks.

I know I will be in tears if I do hear from my donor family as I am in tears as I write this. I too would like to think that this person is never forgotten.

Take Care

Diane
Diane Lewis
Liver Transplant Nov 20, 2008
Vancouver General, BC
Rod K.
Member
Username: Rod_k

Post Number: 2
Registered: 04-2009
Posted on Saturday, April 11, 2009 - 12:15 pm:   Edit Post Delete Post Print Post

I wrote my donor's parents and have exchanged e-mails and photos. They had a beautiful daughter who was accomplished and had always told them that she wanted to be a donor. I know that as a parent, I would want to know that my child was still living and saved so many lives.
Karen R.
Member
Username: Relivkaren

Post Number: 2805
Registered: 07-2007
Posted on Sunday, April 12, 2009 - 09:51 pm:   Edit Post Delete Post Print Post

Rod K:

Welcome to Transplant Buddies! I am so glad that you have been able to make contact with your donor family. That is fantastic! Thanks for sharing your great news with us!

We hope you visit often! We look forward to getting to know you!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Double Lung at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
CJ
Member
Username: Still_standing

Post Number: 145
Registered: 11-2008
Posted on Monday, April 13, 2009 - 04:03 pm:   Edit Post Delete Post Print Post

Rod,

Welcome!! Congratulations on corresponding with your donor's family!

I wrote my donor's family last summer but have not heard back. I just recently passed my one year anniversary. I have been considering writing again this summer. I'm still undecided. I don't want to be a painful reminder of what they have lost. It sure would help if I knew something about their personalities. I would like to write one more time I just don't know when. My one year anniversary was March 1st. I would like to get further away from that date before I decide what to do.

I look forward to getting to know more about you.

CJ
CJ
Liver Transplant
3/1/08
Maryland
Diane
Member
Username: Mary_diane

Post Number: 94
Registered: 02-2009
Posted on Saturday, May 02, 2009 - 01:56 am:   Edit Post Delete Post Print Post

I too have not heard from my donors family. I so want to know more about the person who donated an organ, and because of their gift, I am here. With no identity, and not knowing the sex or age of the donor, I have named my new liver Stella Mae.....not out of disrespect to the donor, but to help me attach a person to my new liver.
I may send a brief card again around my one year anniversary level, but I do not want to increase emotional pain for the donor family. If they are truly unable to respond, I can certainly respect their wishes. but each night I wonder who this person is....who did they leave behind? a life partner, children, parents? And this week I also realized that if their life ended in an accident, their may be a yet another player who has caused the accident, but would not likely know that even though there was death, that their was also the gift of life.
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC
Sarah's mom
Member
Username: Sarahs_mom

Post Number: 99
Registered: 02-2009
Posted on Saturday, May 02, 2009 - 11:09 am:   Edit Post Delete Post Print Post

Hello Diane,
Follow your instincts...if you have a desire to write again on the one year anniversary, then I would go ahead. They might be ready....or they might not be. The first anniversary of losing Sarah was horrible for me...and the 2nd year was much worse than the first! (because the shock wore off). But, I listen to my instincts to guide me along.

I go to the mailbox every day hoping for a letter from someone just like you. and sometimes there is! I have them all in a folder and they are treasures.

I am glad to hear you are remembering your donor and honoring them in your own ways. That touches my heart. Thank you.
Sarahs mom, Kristen

Donor family
Florida, near Pensacola.
Hostess Risa
Board Administrator
Username: Risa

Post Number: 8880
Registered: 05-2003
Posted on Saturday, May 02, 2009 - 01:52 pm:   Edit Post Delete Post Print Post

Thank you Sarah's Mom for sharing how you feel. You just may have inspired many of our readers who never join in to write to their Donor Family.
God Bless You
Risa@transplantbuddies.org
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Thanks page
http://www.transplantbuddies.org/html/thanks.php
Diane
Member
Username: Mary_diane

Post Number: 95
Registered: 02-2009
Posted on Saturday, May 02, 2009 - 02:36 pm:   Edit Post Delete Post Print Post

Dear Kristen,

Thank you so much for being on line, and with your own grief be able to reach out and be supportive of those of us who have received transplants. Again, I am so very sorry that you have lost your beautiful daughter. It sounds as though it is some help to you to know that through Sarah's gift, others have been able to carry on with their lives.

I will likely write again at the one year anniversary. I would very much like to know a little about my donor, but more importantly at this point is the emotional comfort of the family that has been left behind. If they are unable to write for any reason, it is OK....I do understand. We all do what we can.
I know that it never ever goes away, but I do hope that time has softened your grief with your loss of Sarah. Thanks so much for being there for others.
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC
dixieluvinchik
Member
Username: Dixieluvinchik

Post Number: 6
Registered: 06-2009
Posted on Monday, June 22, 2009 - 10:47 am:   Edit Post Delete Post Print Post


Dear Everyone,
I think I was avoiding this posting place. As always, I expect things to be worse than they are. the worst part was my 28 year old baby only son was dead.when Doc. told me He was braindead, I asked"do You come back from braindead?" He said "no." then we got to go in to see him. I raised his eyelids, He was gone!
OUR LADY OF THE LAKE HOSP. Baton Rouge, LA brought the recipients in. I've read they have a better sucess rate that way.
Easter 3:AM they took Jeremy into surgery. I was so numb, but I had to pray for the folks that were also in surgery. My Daughter-N-Law told me the families of recipients did want to have contact us oneday. We had left our Name in hope they would.
We can't wait to hear from them!!!!!!!!!!!!
love to all,
kate, Jeremy's Mom
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2487
Registered: 02-2008
Posted on Monday, June 22, 2009 - 02:00 pm:   Edit Post Delete Post Print Post

Kate(Jeremy's Mom),

Two of our Donor Moms, Janet and Sarah's Mom, Kristen have posted comments for you under the "Transplant Blogs" section, under your "OK_I think I can" thread.

Since you are new to the site, I'm just simply assisting you to maneuver around the site, lit'l lady. I am very anxious for all three of you to make contact. Good luck & God Bless

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
Janet
Member
Username: Jan

Post Number: 448
Registered: 05-2003
Posted on Wednesday, June 24, 2009 - 01:45 am:   Edit Post Delete Post Print Post

Bob, you would think that I was new to the group too....I still can't find my way around the site half the time....how long have we had this 'new site'....and I still can't find my way around??? Sad I know..

Love ya,
Hugs, Janet
Mom to Joe, who was an organ donor
6-1-80 / 8-21-94
kidneys, heart, and liver, plus lungs for research
www.joesmemorybears.com Cuddly bears made from your loved ones clothing
http://www.childreninheaven.netfirms.com/joekeller.htm Joe's Story

Dover, Pennsylvania
South Central PA
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2497
Registered: 02-2008
Posted on Wednesday, June 24, 2009 - 07:45 am:   Edit Post Delete Post Print Post

Janet, I think it was almost 5yrs ago when you and I first met on Risa's original Transplantbuddies website. She has created a wonderful site here, bringing many folks from around the world together. Many of us have become very personal friends, due to Risa's effort of creating this wonderful website.

Thank you Risa and God Bless.

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
eccoblue
Member
Username: Eccoblue

Post Number: 845
Registered: 05-2008
Posted on Wednesday, June 24, 2009 - 10:25 am:   Edit Post Delete Post Print Post

You know what? I think Risa is more than just a beautiful lady. She's a hero! There is a reason God put her on this earth and Tx Buddies is one of those reasons, imho.
Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2499
Registered: 02-2008
Posted on Wednesday, June 24, 2009 - 10:37 am:   Edit Post Delete Post Print Post

I couldn't have stated this any better, Kelli. Thanks for joining in.

Risa is "Numero Uno" #1

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
Karen R.
Member
Username: Relivkaren

Post Number: 3160
Registered: 07-2007
Posted on Wednesday, June 24, 2009 - 01:01 pm:   Edit Post Delete Post Print Post

Hey there!

Add me to the list of people that think Risa is a hero!!! I am truly thankful for all she has done to make Transplant Buddies a wonderful place to make friends and receive much needed support for all of those that are touched by organ donation and transplantation.

Thank you Risa!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Janet
Member
Username: Jan

Post Number: 450
Registered: 05-2003
Posted on Thursday, June 25, 2009 - 12:40 pm:   Edit Post Delete Post Print Post

Bob, Thank you for your sweet comments.....and you can certainly add me to the list of people who think Risa is a hero also....she was very welcoming when I joined the group.......not even sure if I remember how I found the group, or I think it found me....but I am so glad that I am here.

Sending love to you all,
Hugs, Janet
Mom to Joe, who was an organ donor
6-1-80 / 8-21-94
kidneys, heart, and liver, plus lungs for research
www.joesmemorybears.com Cuddly bears made from your loved ones clothing
http://www.childreninheaven.netfirms.com/joekeller.htm Joe's Story

Dover, Pennsylvania
South Central PA
hibby
Member
Username: Hibby76

Post Number: 1
Registered: 07-2009
Posted on Tuesday, July 21, 2009 - 12:26 pm:   Edit Post Delete Post Print Post

I'm new to the board and this is the first thread I've read through. I lost my little boy Mason, (picture), just over a year ago. He was 18 months old and we lost him abruptly when he choked on a pretzel that we couldn't get dislodged.

I've spoken to quite a few families that have joined the unfortunate club that we're now part of. Some were able to donate others were not. For me it's been tremendously good. I found two of the blogs of the recipient families and read from them often. I yearned to be able to communicate with them. It's so good for me to know that someone else, in some way, loves my son and will always remember him. I desperately wanted to contact them on his birthday and let them know that their new heart (or respective organ) just turned two years old!

I've had extensive contact with one family since (letters,phone, facebook, email, etc). With another I've had very limited contact, and none with the third. For me, it's been tremendously good. My wife has eagerly listened and read, but it's been harder for her to have contact directly for reasons that she doesn't even understand.

I have yet to hear someone in our situation talk about not ever wanting to communicate with the recipient families, although I suspect it happens.

One thing that I can say is that time is different now than it was before. Projects that used to take a day now might take a month. I can't imagine anyone ever not welcoming something that says "I was just thinking my Donor and wish I knew when my heart was going to have it's next birthday" or "I know I've said this 10 times, but I just wanted to say "thank you" again." I can't imagine those words ever getting old.

I sent the families a picture of my little boy. I hope they treasure it.

that's just me and my experience and opinion. I'm looking forward to spending some more time on these pages.
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9788
Registered: 05-2003
Posted on Tuesday, July 21, 2009 - 12:42 pm:   Edit Post Delete Post Print Post

Hello Hibby

Welcome to Transplantbuddies, a place where you can feel comfortable sharing your feelings and thoughts. I am all teary-eyed right now after reading your letter. Your little boy Mason was precious as precious can be.

You are so correct in what you say about there are never enough Thank you's to send to your donor families.

I hope you stay around here and get to know Sarah's Mom (Kristen), Joe's Mom (Janet) and Jeremy's Mom (Kate)

God Bless the both of you
love
Rise'

PS: You might want to start a new thread to introduce yourself or perhaps start a blog here.
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Sarah's mom
Member
Username: Sarahs_mom

Post Number: 121
Registered: 02-2009
Posted on Tuesday, July 21, 2009 - 12:52 pm:   Edit Post Delete Post Print Post

Welcome to the site, Hibby. That picture of Mason is adorable. I am so very sorry that you lost your precious little boy. Please also send those thoughts on to your wife from me.

My daughter was killed in a car accident 2 years ago. Thanks to this site....I have good contact with one of the families that received her organs....but not hearing very much from the other 4. I'm still hopeful. and waiting. It's something that keeps me connected to my child....and I'm one of the ones that wants to hear about those people and stay in contact with them. I know several people that don't share my view on this and say that it's just too painful. No right, no wrong...it just is.

I have been going through some very dark and low times these past 2 years. The people who are on this web site have truly been helpful to me. They support me and I can feel that they care about me.

I can't wait til Ol'Bob sees the picture of Mason! He helps us keep our lovies memories alive. you'll see.......

Stick around with us.....we will listen when you've worn out all the ears around you! and, unfortunately....we understand.

Here's a big hug
XOXOXOXOXO
Sarahs mom, Kristen

Donor family
Florida, near Pensacola.
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2675
Registered: 02-2008
Posted on Tuesday, July 21, 2009 - 01:37 pm:   Edit Post Delete Post Print Post

Hi Hibby,

I hope you don't mind, I couldn't resist posting this pic of your beautiful young son Mason.

I can truly understand why your heart is aching. Mason is a very cute lit'l fellow. I'm sure that you have read many comments on this site to know, all of you Donor Families are very, very special to all of us. There are several Donor Moms & Dads participating on this wonderful website, sharing their stories, also. We love 'em all.

Welcome to transplantbuddies and I hope you will visit quite often.

Hi to you Kristen(Sarah's Mom) Love ya' too.....

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
hibby
Member
Username: Hibby76

Post Number: 2
Registered: 07-2009
Posted on Tuesday, July 21, 2009 - 03:09 pm:   Edit Post Delete Post Print Post

Mason

I meant to attach it earlier but it didn't get uploaded. Same pic, better quality.
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9789
Registered: 05-2003
Posted on Tuesday, July 21, 2009 - 03:45 pm:   Edit Post Delete Post Print Post

Thank you Hibby for posting Mason's beautiful picture. Yes the quality is greatly improved.

love and HUGS,
Rise'
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Sarah's mom
Member
Username: Sarahs_mom

Post Number: 122
Registered: 02-2009
Posted on Tuesday, July 21, 2009 - 03:49 pm:   Edit Post Delete Post Print Post

Those gorgeous eyes are mesmerizing! I just want to look into them all day.
sigh.
so sad.
Sarahs mom, Kristen

Donor family
Florida, near Pensacola.
Meagan
Member
Username: Newheart14

Post Number: 126
Registered: 01-2009
Posted on Tuesday, July 21, 2009 - 03:50 pm:   Edit Post Delete Post Print Post

I am always touched when I read the donor families' postings. I was especially touched over beautiful Mason. What a sweetheart. Also beautiful Sarah and young Joe. I can't imagine how all of you feel but I just want to commend you for your unselfish generosity.

I mourned for my donor for the longest time. I still do. He was very young and lost his life in a motor vehicle accident. I felt so guilty that he was gone and I was alive. I have written the donor family three times and I was blessed to receive a letter from my donor mom last Christmas. It was so sad because I could not imagine how she would get through her first Christmas. I treasure that letter and have it nicely preserved. I know one of the donor moms is having some trouble writing her letters but you have to know anything you write will be very welcome to your recipients.

Anyway, I just wanted to say what terrific people all of you donor families are. You are all angels and your little angels continue to live on. I would love to be able to put my donor mom's hand on my heart but that will never happen because of the confidentiality laws in Canada.

Bless all of you.
Heart and Liver Transplant - February 14, 2008
TGH, Toronto, Canada
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2676
Registered: 02-2008
Posted on Tuesday, July 21, 2009 - 06:36 pm:   Edit Post Delete Post Print Post

Hibby, yes your pic is much better quality. Sad isn't it, that a simple lit'l Pretzel can end ones' life. My heart goes out to you and your dear wife over the loss of this beautiful young son.

Hope you don't mind my posting of lit'l Mason's photo. I just couldn't resist sharing this lit'l fellow with others. FYI....I am a Grandfather to 13 youngsters, of which we lost one of them, due to a hunting accident in 1991.

God Bless

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
Karen R.
Member
Username: Relivkaren

Post Number: 3292
Registered: 07-2007
Posted on Tuesday, July 21, 2009 - 08:39 pm:   Edit Post Delete Post Print Post

Hibby:

It is an honor to have you join Transplant Buddies. Your son is beautiful! It has been really hard for me to write this post because my heart is broken for you and your wife. I am so sorry that Mason had to leave you so soon.

I am so glad that you find comfort in knowing that your son has helped other children live. I am also thankful that you have been able to be in contact with some of the recipients. I am sure that helps to know that your son's life had a purpose. I truly believe that the gift of one's organs is the greatest human gift. Your son and your family are hero's.

I am still waiting for my gift (double lung). I pray for my potential donor and family often. I will never forget that for me to be healthy and able to be a mom to my son, someone will have given me a an extremely precious gift.

Thank you for sharing Mason with us. Thank you for sharing your story. Please know that we are all here to support you. I am looking forward to getting to know you better and hearing more about what a wonderful child Mason was.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Janet
Member
Username: Jan

Post Number: 489
Registered: 05-2003
Posted on Wednesday, July 22, 2009 - 06:34 pm:   Edit Post Delete Post Print Post

Hibby, Just wanted to drop you a short note and welcome you to the group. Sorry it has taken me so long to respond. I love the picture of your little Mason, he is one adorable child!! Those eyes are beautiful. First, please accept my deepest sympathies for you and your family.....what a huge loss.

My youngest son, Joe died almost 15 years ago, when he drowned trying to save the life of a classmate from drowning. Husbands and wives handle grief so differently from one another, took my hubby and I a few years to 'get on the same page' but at this point, we just try to be sensitive to the others feelings. It all takes time. I am glad that you were able to communicate with Mason's recipients, I look forward to someday meeting one of Joe's recipients also...it probably will never happen, but one can continue to dream.

Sending tons of love to you and yours,
Hugs, Janet
Mom to Joe, who was an organ donor
6-1-80 / 8-21-94
kidneys, heart, and liver, plus lungs for research
www.joesmemorybears.com Cuddly bears made from your loved ones clothing
http://www.childreninheaven.netfirms.com/joekeller.htm Joe's Story

Dover, Pennsylvania
South Central PA
Robin
Member
Username: Mamaru

Post Number: 572
Registered: 06-2008
Posted on Wednesday, July 22, 2009 - 08:28 pm:   Edit Post Delete Post Print Post

Hi Hibby,

I too am so sorry on the loss of your precious and beautiful little boy. As everyone has said, he was a handsome lad and those ice blue eyes are incredible.

I have two children and I can't even think of how to deal with the loss of a child at any age. Sadly, there are some things in life there are no answers for and I do believe that some day we'll get those answers. I am at a loss for words and I hope that the parents who have donated organs from their deceased children will be able to give you and your wife some sort of comfort.

This is very strange and probably just something by chance. About 15 yrs ago, very dear friends of ours lost their 5 yr old son, named Mason to leukemia. He too had the same baby blue eyes and blonde hair and looked so angelic. When I saw the picture of our baby it took my breath away.

Love and hugs to you and your wife!
Forum Leader - Living Organ Donation

Husband had a Bone Marrow Transplant 09/08/1993. Diagnosed with CML that went into a blast crisis and became ALL.

Donated a kidney to husband 6/26/2008
Husband and both kids have PKD

I WANT TO BE REMEMBERED FOR THE LIFE I GAVE AS WELL AS THE LIFE I LIVED
I found this on a website and its so true
mojo2
Member
Username: Mojo2

Post Number: 2
Registered: 07-2009
Posted on Saturday, July 25, 2009 - 03:19 pm:   Edit Post Delete Post Print Post

Hi- I'm middle aged- but think about my 17 year old donor every day-I don't know who she is but I did write a letter about a year ago to the family but got no response. I would really like to know more about my donor and her wonderful family. I also think the donor organization did not send the letter as it can easily get lost in the shuffle. I'll try again. Here is a question-I had heard that recipients now have the right to know who the donor was, sort of like in the adoption world. Is this true?
Sarah's mom
Member
Username: Sarahs_mom

Post Number: 123
Registered: 02-2009
Posted on Saturday, July 25, 2009 - 05:48 pm:   Edit Post Delete Post Print Post

Hello Mojo2.
I'm so glad you found this web site! Welcome.
When did you get your new organ?
I know for a fact that not all letters always get through.....on both ends of this journey. I think the rules are all different per state, and even per organization.
If you are feeling a desire to reach out to your donor family again.....I would follow your instincts. Maybe this time your letter will get through.....or, Maybe this time, the family will be ready for contact.

My 16 year old daughter, Sarah, donated 5 gifts of life in Feb '07 in Florida. One of them went to a child....but all the rest went to middle aged adults. I LOVE hearing from them! even when the news isn't all rosey.

Hope you are doing well and hope to "talk" to you again soon.
Take care,
Kristen
Sarah's mom
Sarahs mom, Kristen

Donor family
Florida, near Pensacola.
mojo2
Member
Username: Mojo2

Post Number: 3
Registered: 07-2009
Posted on Sunday, July 26, 2009 - 11:16 am:   Edit Post Delete Post Print Post

Thank you Sarah's Mom for replying-My new heart was given to me on December 18, 2006. I am doing very well. I will take your advice and try writing again. I did once meet another donor Mom and she said she never received any letters from the recipients of her son's organs but would like to. Thanks so much for helping out with this. To anyone else reading this is it legally possible to now access you donor record in New York? Of course I would not want to contact people who prefer not to know the recipients, but I just want to know if I have a legal right.
Karen R.
Member
Username: Relivkaren

Post Number: 3305
Registered: 07-2007
Posted on Sunday, July 26, 2009 - 06:42 pm:   Edit Post Delete Post Print Post

Mojo2

Welcome to Transplant Buddies! Congratulations on your successful heart transplant! I sure hope that you will get a letter from your Donor family soon. I am still waiting for my transplant, so I am not one to give advice on this subject, but as you have seen we have a lot of folks that have had contact and that haven't had contact. If it were me, I would keep writing.

I hope you continue visiting. We look forward to meeting you!

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.

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