Celebrate your Transplant Blessings

Posted by Rosemary, Volunteer Mentor @rosemarya, Nov 15, 2016

With Thanksgiving on the horizon, our minds reflect on the blessings that we have received. I thought that this might be a good time to share a short note or statement about some of the blessings that you are able to enjoy as a result of your organ or tissue transplant. And in doing so, we are honoring the donor (no names) who made our life today possible.

Interested in more discussions like this? Go to the Transplants group.

@chattykathy

Hello; I’m just joining this group today. I wanted to comment on subject of sharing our feelings about donors and undergoing transplant and survival.

I also find that when I share on FaceBook I rarely get likes or comments from others. People who have not walked the walk do not know what we have gone through to survive. I think people realize that crictal illness does not discriminate. It can happen to anyone at anytime. People do not know what to say or react to illness. It is the same way with blindness; people can say the darndest things to me when they find out I am blind. Some people talk really loud to me like I am deaf also. They talk to my husband instead of me like he knows all the answers and I do not know anything.

When one struggles to survive a critical illness like cancer, transplant surgery, or millions of other diseases, they need all the support they can get. Some times it takes a village to provide support for the situation. I am so glad I have found all of you and can share my feelings with people who have walked the walk.

Thanks to all who have responded. If I can be of help, I will be happy to answer all questions.

CK

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@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

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@IWantToBelieve

Hi @rosemarya. We chat once again. I’ve been posting things on Instagram (only social media I use) about Donate Life month and I get so frustrated. If I post something about my kids or dogs I get many “likes” but when I post something serious (about donating, Polycystic Kidney Disease etc. during their awareness months) usually the only people that “like” my posts are family members. My husband notices the same thing on Facebook. People say to look for their living kidney donor on Facebook but I have little hope that people will respond to anything serious.

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@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

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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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@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

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

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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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@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?

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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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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

REPLY
@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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@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

REPLY
@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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@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

REPLY
@chattykathy

Hello; I’m just joining this group today. I wanted to comment on subject of sharing our feelings about donors and undergoing transplant and survival.

I also find that when I share on FaceBook I rarely get likes or comments from others. People who have not walked the walk do not know what we have gone through to survive. I think people realize that crictal illness does not discriminate. It can happen to anyone at anytime. People do not know what to say or react to illness. It is the same way with blindness; people can say the darndest things to me when they find out I am blind. Some people talk really loud to me like I am deaf also. They talk to my husband instead of me like he knows all the answers and I do not know anything.

When one struggles to survive a critical illness like cancer, transplant surgery, or millions of other diseases, they need all the support they can get. Some times it takes a village to provide support for the situation. I am so glad I have found all of you and can share my feelings with people who have walked the walk.

Thanks to all who have responded. If I can be of help, I will be happy to answer all questions.

CK

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Good news ladies! We are having driveway and patio re paved. The backhoe operator told us that he never does a job with out getting the woman’s approval first:-)
Rosemary

REPLY
@chattykathy

Hello; I’m just joining this group today. I wanted to comment on subject of sharing our feelings about donors and undergoing transplant and survival.

I also find that when I share on FaceBook I rarely get likes or comments from others. People who have not walked the walk do not know what we have gone through to survive. I think people realize that crictal illness does not discriminate. It can happen to anyone at anytime. People do not know what to say or react to illness. It is the same way with blindness; people can say the darndest things to me when they find out I am blind. Some people talk really loud to me like I am deaf also. They talk to my husband instead of me like he knows all the answers and I do not know anything.

When one struggles to survive a critical illness like cancer, transplant surgery, or millions of other diseases, they need all the support they can get. Some times it takes a village to provide support for the situation. I am so glad I have found all of you and can share my feelings with people who have walked the walk.

Thanks to all who have responded. If I can be of help, I will be happy to answer all questions.

CK

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@rosemarya The backhoe operator is a smart man. 😉

REPLY
@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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what is UNOS?Maria

REPLY
@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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@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

REPLY
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