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Rosemary, Volunteer Mentor (@rosemarya)

Celebrate your Transplant Blessings

Transplants | Last Active: Apr 18, 2017 | Replies (28)

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@rosemarya

Do you know that April is National Donate Life Month !
Check out the transplant blog for more information and the history of Donate Life Month.
http://mayocl.in/2n7Xn3z
April is a great time to write a letter to your donor family.
This was the most difficult letter that I ever wrote. Words are not in our vocabulary to express the gratitude for the gift of life – I encourage you to do it anyway. You will be happy you did it. Your donor family will be happy you did it.

Do you have any transplant blessings you want to share?

Wishing all of you happiness and health.
Rosemary

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Replies to "Do you know that April is National Donate Life Month ! Check out the transplant blog..."

@rosemarya I did do a letter a couple of months ago. I feel too that it was the most difficult thing I ever wrote. At times, like in church when I say prayers for these kind people, I actually get tears in my eyes knowing what they must go through every day remembering their loved one, and that had I gone much longer I would probably not be here. As I have mentioned a few times, I was so well right up until the end and my blood tests were not that bad so we just did not know, and apparently something caused things to quickly go downhill. After four hospital admissions in that last month and a half someone commented to me that it was my time to get a transplant. It was truly a blessing, a miracle, for me to get that call when I did because my MELD had not caught up with my actual condition; it was due to be increased. I got some statistics from “Compare Transplant Centers” and I was one of two women transplanted within my range of statistics in the last quarter of 2016 at my center.
There were so many prayers being said for me I have to believe that did help. I have always been a believer but this has made me much more religious.
I have shared two different posts about signing up to be a donor on Facebook. One was from “Compare Transplant Centers”, and the other from Mayo. Once you realize the difference it can make in lives how could you not? I think most people just don’t because they procrastinate.
JK

@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

@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

what is UNOS?Maria

@mari, This is an excellent question.
UNOS stands for United Network for Organ Sharing. For patients, professionals, donor families, living donors, it is the private, non-profit organization that manages the nation’s organ transplant system. Here is the link, where you will find information, date, policies for transplantation. .
https://www.unos.org
Rosemary

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