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Celebrate your Transplant Blessings

Posted by @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.

REPLY

I am liver/kidney recipient.
I am blessed to enjoy more days with my loved ones.
I am blessed by the people I have met throughout my transplant journey.
I am thankful for my organ donor. I honor and respect this gift of life by taking good care of myself everyday.
I am thankful that I can enjoy eating holiday meals, again. This includes now being part of the planning, prep, and even the clean-up.
I am thankful that I have renewed energy and desire to return to some of my favorite activities like playing my violin and knitting.

Thank you for coming to Connect. I would like to encourage you to add your own “I am thankful/blessed” statements during the upcoming weeks of this Holiday Season.
Rosemary

Did you know that the 2017 Rose Bowl Parade will again feature a Donate Life Float?

Organ donors are honored at the Tournament of Roses Parade on Monday, January 2, 2017. The 2017 float depicts a Polynesian Catamaran with sixty organ transplant recipients ‘rowing’ the huge floral display. The Honorees – Organ and Tissue Donors – are featured by floragraphs which were created by donor family members and loved ones. The 2017 theme is, “Teammates in Life”. It celebrates Organ Donors and Recipients as Teammates in Life.

I’m proud to join with all of you as teammates!
Rosemary

@rosemarya

I am liver/kidney recipient.
I am blessed to enjoy more days with my loved ones.
I am blessed by the people I have met throughout my transplant journey.
I am thankful for my organ donor. I honor and respect this gift of life by taking good care of myself everyday.
I am thankful that I can enjoy eating holiday meals, again. This includes now being part of the planning, prep, and even the clean-up.
I am thankful that I have renewed energy and desire to return to some of my favorite activities like playing my violin and knitting.

Thank you for coming to Connect. I would like to encourage you to add your own “I am thankful/blessed” statements during the upcoming weeks of this Holiday Season.
Rosemary

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pkindron – I am so blessed that I am able to be part of my grandchildren’s lives – I have a grandson who is 12 yrs old and 2 girls who are identical twins @ 10 years old now. It’s been 10 years since I’ve been blessed with this living kidney. I thank God every day! I’m blessed to still be to help my disabled daughter who has had a kidney transplant & has Muscular Dystropy (in a electric wheel chair).

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

@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 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

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.

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

That is a very good point @chattykathy. I have not looked at transplants the same way I do disabilities. A college age family member has a disabitliy (Ankylosing Spondylitis – form or RA) and we have experienced many well meaning, but ignorant, comments regarding her illness. My husband and I had the same experience when our first daughter passed away at 7 months. Comments like, “You’re young, you can have more children,” were meant to be encouraging but hurt instead. What I have learned from those two situations is that people are ignorant and society is not comfortable when others are hurting. Most people want to fix things and when they can’t they just avoid the subject. It is a sad statement about our society but thank you for helping me look at the education I have to do with others in a different light.

@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 CK, you are a wise woman. I agree that people do not know what to say, and even if they care, they are afraid to step out of their comfortable shell. I have changed since my transplant experience. I have learned that I can look someone in the eyes, someone who is suffering with any number of conditions, and say, “I understand”. I may not know the details, but I think understand the value of a genuine hug and free flowing tears.

Someone with a whole lot more ‘smarts’ than me, started Connect as an online community where you can share your experiences and find support from people like you. And as a place to ask questions and get answers. So I guess we are in a sense a virtual village!

Rosemary

@IWantToBelieve

That is a very good point @chattykathy. I have not looked at transplants the same way I do disabilities. A college age family member has a disabitliy (Ankylosing Spondylitis – form or RA) and we have experienced many well meaning, but ignorant, comments regarding her illness. My husband and I had the same experience when our first daughter passed away at 7 months. Comments like, “You’re young, you can have more children,” were meant to be encouraging but hurt instead. What I have learned from those two situations is that people are ignorant and society is not comfortable when others are hurting. Most people want to fix things and when they can’t they just avoid the subject. It is a sad statement about our society but thank you for helping me look at the education I have to do with others in a different light.

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@lcamino, Thank you for sharing. I cannot imagine the pain that you and your husband felt upon the death of your baby daughter. I am sorry for you to have experienced that. As you said, people mean well, but the words do not match.

How is your college age family member handling her disability? Have you seen the discussion in bones and joints about ankylosing spondylitis?
https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/?pg=1#post-223109

I firmly believe that education is vital to developing a sensitivity and awareness.
Rosemary

@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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@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

@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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@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

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

@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

@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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