Celebrate your Transplant Blessings

@lcamino, I'm not surprised. It is not a comfortable topic for most people to think about. When a person considers signing a the national organ donor registry, it means that upon death you want to be a donor. Most people don't want to think about this.

I have a confession of sorts. Before illness (@ 2001) and listing for my transplant I was not registered as an organ donor. Never knew anyone who needed or even had a transplant. Honestly I never really gave it any thought...and then I needed one. After my transplant I have had many people to tell me that they have joined the national registry because of me. wow! I also learned @5 years ago that I, too, can be a registered organ donor. Prior to that there was some question about the antirejection medications that would not allow it. Now, with medical advances it is a possibility. Proud to say, I am a registered organ donor!
Some of my family members offered to be tested for living donation. Unfortunately, my condition was critical and there was not sufficient time to pursue that option.
@lcamino, do not get discouraged that you are not getting likes for your posts. Think of it as sowing the seed with the idea.
Rosemary

@contentandwell, I wrote mine at around 4 months post transplant, too. My transplant team said that we would discuss it at my 4 month evaluation (actually 5 months because I was attending my son's wedding at 4 months). Prayers and tears are a big part of our transplant world, too. And they still are.
Rosemary

@chattykathy Ouch, you hit a sore spot! I have had people talk to my husband and ignore me too, and it's insane! I am every bit as intelligent as he is so why? We dealt with a real estate woman once who was like this. That was it, I would NEVER buy a house from her. So, I don't think that is just because you are blind, although that does contribute. I developed a hearing problem about 12 years ago and wear hearing aids. Sometimes someone calls for me on the phone and I ask them to speak a little bit louder and I have had them ask me to get my husband! Arrggggghhhh
I too am on facebook and put two different things up being a donor about 5 days apart. Not one response to it. Generally there are many responses or reactions. Go figure.
JK

@rosemarya
"Before illness (@ 2001) and listing for my transplant I was not registered as an organ donor. Never knew anyone who needed or even had a transplant. Honestly I never really gave it any thought...and then I needed one. "

This is exactly true of me too. I was so glad when I found out that despite my age I could register as a donor because there are many organs they can use. Take it all, I will have no more use for it. I have heard some people say that they are afraid if they are a registered donor there will be less effort to save them. Personally I think that's a cop-out.
JK

@rosemarya Here the letter is sent to UNOS and they then send it to the donor family. I got a very nice note back from someone at UNOS about my letter. I presume it is a form letter but even so it was a lovely letter.
JK

Good morning - Do you have any idea why we can not review the letter you sent to UNOS?

@pkindron, I don't think that ContentandWell intended to post her letter. She said "here the letter is..." meaning "in my case where I live, the letter is.."

While it might be helpful to see examples of letters, this is a public forum and such a letter is very private and confidential. Perhaps members would be willing to share tips on writing their letter. @contentandwell and @rosemarya what tips might you offer?

Letters to the donor family are highly encouraged by your transplant team. Donor family letters are confidential. There are strict.guidelines to ensure confidentiality for both parties involved. Your organ transplant team will talk to you about writing a letter at an appropriate time. You, of course, are free to write it whenever you are ready.

Letters are written thru your transplant center. Only first name, and no identifying information. It is sent to your transplant center with your identifying information on a separate sheet of paper. And then after being checked for compliance to national policy, it is mailed by the transplant center to the donor family.
You can talk to your transplant center, or your local organ procurement organization. Here is a link that offers good information for you.
https://transplantliving.org/community/patient-resources/contacting-your-donor-family/
It is my understanding that the donor family is contacted about the letter and they have the option to accept it or not. They need time, too, to deal with their own grief and emotions before they are ready. Also the letters that are declined are held securely by procurement agency until the donor family designates that they are ready. Always, the confidentiality and honor of our precious donors is maintained.

I received a reply letter from my donor's family. I received a phone call from my transplant procurement dept. They told me that there was a reply letter for me and asked if I wanted it forwarded to me. I was emotionally overcome with tears, and after taking a deep breath, I said yes. A few days later when it arrived, I needed to sit down, reflect and say a prayer. My husband and I read it together and we cried again, the same bittersweet tears that we had after my transplant procedure. I will only share that I have been blessed by this closure and the permission of my donor's family to enjoy my new life.

Rosemary

@pkindrom, I presume you are asking me? I am sure UNOS would not care but to me the letter is personal. I tend to not share things I write, not even with my husband. There were samples of letters out there on a site, I think it was the UNOS one.
JK

@colleenyoung The best advice I can give regarding writing a note to the donor family is to find a good website with info. I had mentioned my letter went to UNOS. I just found the info and I was wrong, it went to "Donate Life New England" which is part of the New England Organ Bank. They list some tips on their site: http://neob.org/for-recipients/

The examples of letters were either on this site on the one about transplants at UCLA. UCLA's site is excellent, very informational. If not for the long wait I may have even considered double listing there because my son lives about 10 miles south of L.A. and I could have stayed with him.

I am happy with my choice and overjoyed with the surgeon I was fortunate to get. He is so gentle and polite, but also can be a bit funny. He actually asked me in one of my first post-transplants if he could look at my incision! He is the head of the kidney transplant department I believe but he is obviously an excellent liver surgeon too, I recovered so quickly and my incision was so painfree so soon I have to feel part of that was his skill.
JK