Hello all, I am 1 year and about 2 months out from my liver transplant and I got the "ok" to write my donor family, I am having trouble getting it started and I also am not sure what to write and not to write.. I don't want to offend the family, is it ok to tell them that I do Hospital Ministry?
If you have any stories or suggestions please let me know!! Thank you for your help
Check out an older blog of mine (almost a year ago) where I FINALLY decided to take the plunge and write to my donor family--then 12.5 years out. It wasn't easy (to say the least) but once I got going the words just poured out of me. I told them a little bit about my back story (how I got to needing my transplant) and told them the things I've been able to acomplish since my transplant. The transplant center that I sent my letter off to (Mid-America Transplant Services) have specific rules and one of the main ones is that I had to remain anonymous. In other words, my donor family received a letter from someone named Kim who is from Any town, Any state, USA who just happened to have received their child's heart and lungs.
Soon after I mailed off my letter (2-3 weeks later) I was notified that my letter had been forwarded to my donor family. Even though I haven't heard from them I'm planning on mailing a second letter (there was so much I wanted to write in my first letter but couldn't!) PLUS a Thanksgiving card. It took me a good while but I think I found the perfect card for them. Whew!
Please do write them. I have heard from families who never hear from the recipient, and they are so disappointed by that. Even if they don't write back, you should send them a letter every once in a while.
I didn't know what to write either, so I checked with my contact person at the hospital. She said not to write that you are sorry for their loss, because they are already dealing with that loss every day. She suggested instead to thank them for their generosity and their unselfish act. I also think you should let them know how much your health has improved and what you can do now that you could not do before.. Yes, I'd tell them that you do hospital ministry. I tell mine about different ministries and projects within my church.
I try to write about positive things and nothing negative.
Hi Heather.. I don't want to sound trite.. I'm not being so.
This is your first letter.. it's like a first date. Keep it short, simple and to the point.
Tell them why you are writing. To thank them for their magnificent gift.
Tell them a little about you. Your background..things you love. Why you needed a transplant and how the transplant will allow you to continue with your dreams.
You can't be specific anyway. It's your first letter. Let them know how grateful you are and promise to write again.
And that's what i have done several times. I never received confirmation that the letters were sent to the family or received. I'm coming up on 5 years and I will send another. that's about all I can do.
Hi, I gfind it hard to write and keep composure, I was in this state of not being able to write myself, it took me 5 years to come to grips and thne I wrote and sent it in, it will be 13 years xmas eve for me, and as far as I know the donor family has yet to pick it up.
I knew that my donor was a 17 yr old self inflicted gunshot wound to the head, so I know these folks have a sad time dealing with this. As I knew this from day 1 myself it hits home with me, as I spent 20 years flying planers in the USAF and been shot at , bombed, missles, etc and always walked away to have the gulf war crud and being gassed cause me to die, and the docs at Duke who knew me as I worked with them as a medic and transported the tx team for harvesting donor organs, my doc knew my history and saved me.Sit back , take time to write, remeber life is short, tomorrow is not gaurrrrnteed, live each day to the fullest and know we have a purpose to be here yet. I will be 13 xmas eve night at 11:30 PM I am blessed and thanks to m y donor and donor family, if you cannot think of much to say a simple thank you for the gift of life may suffice until you can find a way to express your self more.
nice to have been invited to this site and hope to meet more freinds and I hope I may have bneen a help to you mam, May God bless you and keep you, and just do what you can from the heart and you will know you done your best and will feel the joy.
Heather,You are almost the same time post as I am,and I will tell you that the first time I wrote family was difficult for me.and that was at 6 months.Since I have received 3 letters from donor family since.It was very emotional for me , but I felt that I did have to write to express the thanks and graditude yhat I always feel.I have made it a point to wait until I receive a note until I respond. I have sent cards, letters,to family and I always hear back from mother and I feel a lot better hearing from her. My donor was very young and I only know how hard it must be for the family, especially around holidays and days of remembrence.I am grateful every second for my new life.LIFE IS GOOD. Good Luck, Nick
You know that was one of the hardest things I had ever done.I think it took me about a month to complete my letter. But everything everyone has told you is right. Talk from your heart,tell them your feelings and the words will just come to you.I am so glad I wrote to my donor family and also met them afterwards.It was wonderful. You have a bond that is never forgotten. Just speak from your heart and what ever you say will be right. God Bless you for thinking of that family and wanting to talk to them, it does mean alot to them even if you think it hurts,it is still comforting to them. Good Luck you will do just fine.
Here's my letter sent in 2004. You don't know in advance the level of pain the family still feels. They may want to put it behind them or they may be glad you wrote. Don't tell them you want to have a relationship with them. Just keep in mind the sensitive nature of the communication
Dear Donor Family,
Sixteen months have gone by since I received your daughter’s liver. I only know that she was a young girl in her twenties.
The transplant was very successful and I have had no complications. In fact, my body has accepted her so completely that I have had no rejection episodes since May of 2003. I can run, ride a motorcycle, sail, and do almost anything I did before I got sick.
I turned 60 last August 15th, an age I didn‘t expect to see. Wonderful things happen when your body has been restored to health. Relationships, humility, and patience have stood out most, but the whole world is different. The grass becomes green, the sea becomes blue, sounds regain their “color,” and tomorrow becomes something to look forward to.
During the three years I waited for a donor I had to find a reasons to make life worth living. Psychologically, being able to see beyond the horizon of one’s life is difficult.
I found enough meaning in my three grandchildren and the positive things I could do in the future that I couldn’t go on to do until a donor could save my life.
This is a hard letter to write. I have written it many times, crumpled it up and let it lie for a while. I wasn’t sure you even wanted to revisit one of the hardest times in your life. My coordinator, Kevin, said that you might want to hear from me and I was encouraged. I pray for your daughter and I thank you very much.
I wrote my donor family about a month after my transplant. July of 08. The transplant team at Vanderbilt Medical Center here in Nashville said it was all confidential and they gave me the info that I could say and not say. I never heard anything from my donor family so I am assuming they wanted to be discreet. I am curious to know about the person that donated. But that's okay, I am truly blessed that I received someone's liver. Good luck!
Hi Heather! It is wonderful that you are going to write your donor family. My situation was a little different as I knew who my donor was, but had not seen him in 17 years. But 2 weeks ago we flew to CA to spend an afternoon with his family....and needless to say it was emotional for all.
I read a leaflet that indicated that when writing to your donor family you should:
* Talk about yourself. Use only your first name and only mention the state you live in and not the city. Occupation, hobbies, family situation (marital status, children, grandchildren....no last names)
* Keep the language simple.
* Recognize your donor family and thank them for their gift.
* Do not refer to your organ with a nickname (I'm guilty of this as I call my liver by my donors name)
* Do not mention religion. (but volunteering is good)
* Tell them what life was like before and after your transplant. How long you waited for a transplant, what the wait was like for you and your family, how the transplant has improved your health and changed your life. Whether you have gone back to school or work, celebrated another birthday, became a parent or grandparent.
I wish you the best and please let us know how it turns out.
I'm now nearly five months into my transplant, I do want to write to my doner family, I have found that the co-ordinators are the best source of advice, they told me to wait until I had "Stabilized" , but like you I have no clue as to what I will say!, but again talk to your co-ordinators they are the best source of advice!
I am 3 months out and starting to ponder what will I say in my letter to my donor family, I was told to wait to write my letter for at least 1 year. This is a great topic after reading other responses I now have a general format on how to begin my letter. I know your letter will be healthy to your donor and God bless you.
If your doc write BS/BS and specifies that you need prograf, not a generic med, they will back down. It's up to a doc to decide. All generic meds aren't the same as the name brand. At MGH they prefer prograf, although they said…"
"Hi Dottie, congratulations on your transplant. I have 10 years on my new liver this month. You have a new organ for only a few years. I would suggest you keep a spreadsheet of your labs as far back as you can so you can notice any…"
"Hi Devra, I am Darlene & had a DLTx 3-3-11. So far no problems with lungs but I have gained 50 lbs since transplant. Finally they lowered prednisone this week to 2 1/2 mg once a day. I have had some kidney damage they are…"
Welcome from me as well. I'm three plus years out...I was on the prograf (as much as 30 mg a day) and others including immuran (as much as 150 a day) and prednisone for the first year or so...I'm now down to simply 1mg x 2…"
So I had my first liver tx in 2005 (living donor) and had bile duct issues. I had a 2nd tx March 16th and have bile duct problems yet again and now I'm faced with needing a 3rd tx. Has anyone out there had 3 transplants? I've been stuck in hospital since March and the doctors want to send me home...even though I still require IV antibiotics and a VACC system. My family and I are quite nervous.
I wanted to help as well, but I am no longer under 18. I do hope though that your project goes well and proves to be informative for you and those to whom you show it. If you do not mind me asking, are you graduating as an undergrad or…"
"Welcome Dottie! I had thought I would have been on more immunosuppressant than I am as I received six organs in my transplant, but I only take 2mg Prograf twice daily without a steroid. I was on the steroid Medrol in the very beginning but the…"
"Hi Dottie - I'm a full, no-living-donor transplantee....I never heard of the bone marrow option....but then again I have heard someone who went to Taiwan for a liver and is on no meds and doing fine after 6 years. Whilst it might be feasible,…"
Well I am shiny and new here but received my tp a couple years ago february 3rd. Anyway I see all these people that tke really low doses of prograf and kinda wonder why mone is so high my doc has me taking 6 mg 2x a day. (shrug)
Well I am new here but have to say I grew up in New England and my love for seafood did not go away post TP. I do eat seafood a lot actually but am EXTREMELY picky about where I eat it and where I buy it. The things that worry me most…"