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MrGrimm888's avatar

Can I get some suggestions, about writing a letter to the family of my donated liver?

Asked by MrGrimm888 (18793points) 1 week ago

As some of you know, I received a liver transplant in October 2022. My health has been up and down, but is mostly up now. I wanted to write them, when I knew I would probably live. (If that makes any sense.)

I have a specific person who will proofread it, and decide if it can be sent to the family of the organ donor. So. I’m not concerned about saying the wrong things necessarily, but I really want to express my gratitude. If I were them, I would likely take great solace from knowing that someone is alive because of their loved one.
It also occurs to me, I could be reopening a families’ wounds, simply by bringing all of this up.

I have written huge, lengthy versions. I thought about trying to keep it simple, and don’t really like that either.
What would you like to hear, from someone like me if you lost an organ donor loved one?

When I opened my eyes, after a 10 hour surgery, I immediately felt better. It was amazing. It’s fairly impossible to articulate.
Any help, would be greatly appreciated.

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12 Answers

JLeslie's avatar

I can understand why it is difficult to write the letter. Are you in any groups of people who received letters like the one you are trying to construct. I guess the donation was from someone who passed away and not a live donation of a piece of a liver. I also would be at a loss what to say. Not wanting to upset them, but wanting to say how grateful you are.

I would include what you wrote above: When I opened my eyes, after a 10 hour surgery, I immediately felt better. It was amazing. It’s fairly impossible to articulate.

I would thank them and tell them a little about yourself; general things maybe about family and things you want to pursue in life.

Maybe write that you think about the loss their family has suffered.

Would you want to, or are you allowed to, tell them if they have any questions they can get in touch with you. Maybe they wonder if you are similar to the person they lost. I have no idea what I would wonder.

I’m interested to see what other jellies suggest.

MrGrimm888's avatar

^I’m fairly certain that neither party is supposed to be able to know the other.

It was definitely a full liver, from a 30 year old person who passed.

While you are on “the list” waiting for an organ, you get called in to the hospital whenever a possible match is available. Usually around midnight. A representative gets contacted by a local hospital that they are going to have certain organs. That person calls me, asks lots of questions about my current health, and tells me about the liver.

I was called in 3 times, where I got admitted, got cleaned and bloodtests for surgery, only to hear after 6 hours of waiting that the organ was not deemed useful for transplant upon further inspection.
Once. My blood work was too bad for me to survive anesthesia.
So. I thought I was going to get the surgery 4 times, before I actually got mine. Honestly. The night I did end up getting a liver, I assumed that either the liver or my health, would prevent it from happening.

I was given 4–6 days to live in November 2020. October 2022, I was still barely alive. I was fairly sure I would never survive the long, radical surgery.

They changed my liver out, like a car stereo. It’s quite amazing.

Another thing. I have discovered some differences since I have had the new organ. I no longer have allergies. I now like oatmeal, and mustard. My sense of smell is 1,000 times better. Although that is probably tied to the no more allergies. My nose used to be permanently stopped up, unless I was in a desert environment.
I wonder if the donor liked oatmeal, or mustard. But. That doesn’t seem like a direction I would like to go…

I know it’s not like I can “fail” this assignment, but yeah it’s really important to me.

One of the people with the program stopped by my room after a few really rough recovery days. He asked me lots of questions about my life, so he could tell the donor family how they saved a great person.
The guy seemed almost disappointed with my every answer. I wasn’t famous. Wasn’t a war hero. Wasn’t 100% sure if I have children. (Long story.) And after he left, I felt pretty down on myself. I had been extremely painful, but in a very positive mood before I talked to him.
I guess. I thought I didn’t want to disappoint the donor family.

A lot of pressure comes with a transplant. I have a lot to live up to. I’m aware it’s essentially a second chance. I’m certainly aware that most people barely get a first chance…

JLeslie's avatar

I would definitely tell them about your allergies changing, and those little things you have noticed and wonder about the donor.

I think it’s ok to talk about the waiting and the surprise that you finally were going in to have the surgery. Everything you wrote was interesting and moving to me.

You could title each section so they can skip around like chapters in a book. Helping them gauge what they want to read or set aside for later. It might not flow the same though if you do that.

Whatever you write they can stop reading and pick it up another time if it is overwhelming

If it was me receiving the letter I think I would read it 20 times I would be so happy to receive it, but it’s hard to really know how I would react it is such a unique experience that it is hard to predict a reaction. I think I would like if it rambled on for a bit, hopefully answering any questions I had about the person who received the liver and their experience.

I don’t think they are looking for you to be a celebrity or someone who invented the cure for cancer. I doubt that ever entered their mind.

SnipSnip's avatar

You are overthinking this. You are capable of sharing your feelings so just do that.

seawulf575's avatar

Tell them that you are sorry for the loss of their loved one and nothing can assuage the grief they must be feeling. Tell them that you had been close to giving up. Tell them that the generosity of their loved one has given you a second chance and that you feel that you now have a strong reason to live and to live well. Thank them again for the caring their loved one had to be an organ donor.

Use your own words, but this is probably the gist of what I would say in a letter. And hand write it! Don’t type it up. Make it personal.

Strauss's avatar

I once worked with a man who was a recipient of a donated heart. He knew that the donor was a young girl who passed as a result of an auto accident. I don’t know if he ever had or took the opportunity to express hid gratitude to her family, but in the short time I worked with him, (less than a year) he often stated that he thought of the girl every day.

Call_Me_Jay's avatar

Congrats! So glad to see you can spend more time with us thanks to miraculous medicine and the generosity of a donor

I donated a kidney, because my brother needed it. But we were blood-type incompatible, so my spare kidney was flown across the country and a compatible specimen was flown back for my bro. Proudest moment of my life (so far).

I was given the option to converse with the receiver. I opted not. But from the paperwork, his family found my identity. They called the hospital and rung my number. I was drugged and weary and declined the call. I regret it.

In hindsight, I wish I wished them the best and thanked them & their donor for saving my brother’s life. I wish I told them that my kidney was a gift with no strings attached and I will benefit from using my “kidney donor” bragging rights forever. I am thrilled they can use it and thrilled my brother received a kidney in exchange.

For this exercise, let’s pretend the situation is reversed, and I have to thank an organ donor. My inclination is towards short and direct.

Here you go, off the top of my head:

Dear family and friends of [decedents name here],

My heart explodes when I think of you all. I cannot fully express in words my gratitude to [decedents name here] and all of you.

But here is my attempt.

[decedents name here] saved my life. Literally. How many people can say that in truth? [decedents name here] is my hero. I can never give enough thanks. I will try to live a life worthy of his/her gift to me.

Eternal love and gratitude to you,

Call_Me_Jay

RedDeerGuy1's avatar

~Send with a message “Was delicious, and was with some fava beans, and a nice chianti”.

MrGrimm888's avatar

Thank you guys, so much.
I have taken something from each suggestion.
@Strauss I too think about the donor. It’s impossible not to.
This could be scientifically explained otherwise, but I never liked oatmeal. I had some after surgery, and noticed it gave me an odd comfort.
Now to really sound crazy. I feed myself sugar free oatmeal cookies. An inexplicable attempt at making the organ comfy, and reward it.

When the diagnosis was made, I was VERY uncomfortable with the idea. I struggled with the concept, and the many ethical issues right up until THE night.

I feel like a character in an old science fiction novel. It’s very weird. If for some reason I am not thinking about it, the massive L shaped scar right under my ribs reminds me.

@seawulf575 I really like the idea of hand writing it. Maybe I will write my final draft, and type it out too. My hands shake pretty bad, and I want to make sure they can read it.

@Call_Me_Jay Your unselfish act does not surprise me. Well done. You are indeed a hero.

I received hundreds of liters of blood products, over the years. Donating blood is something I used to do, and recommend that everyone does. It’s sad, how fast you go through blood products.

janbb's avatar

@MrGrimm888 I would keep it short and sweet and not make it too much about you and your life. Nor would I try to put myself in their place and make assumptions about their grief. A short paragraph of gratitude and appreciation might be the right way to go.

canidmajor's avatar

@janbb is right.

Perspective from two sources here.
The first one from my friend who lost her son and donated his organs. She appreciated the thank you notes from all the recipients, of course, but disliked the long, detail-filled letters, they were too much for her to process. The person who got his heart, for example went on and on about being able to ski again, and where they would ski, and how fun and marvelous, etc etc etc. her son had loved to ski.

The second perspective is from my neighbor who was transplant co-ordination in our region for many years. She also suggests a brief and heartfelt gratitude note, and that you contact your local transplant support group or the coordinator themself. They are very familiar with both sides of this.

MrGrimm888's avatar

^Yeah, like I said I have a person that is supposed to help me.

I am just looking for lots of ideas, and trying to make sure I don’t miss something important.
I do plan for this to likely be a one time thing. I want to do the best I can.

I’m VERY thankful for everyone’s advice, and have much to consider.
I have a upcoming appointment that should provide me with the right person to get it done.

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