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.

@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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@rosemarya,

Once again a tardy response. Thank you for your condolences. My husband and I have come to terms with losing our daughter and have lead numerous grief support groups using GriefShare materials. GriefShare.org is a great resource and way to find a supportive community anywhere in the U.S.

A family member has had AS since she was six so she has gone through many phases but has come to accept her disability and manages it well. This is her first year away from home so she has had a bit of a steeper learning curve but she is doing well. I know there is a discussion but I have not explored it yet. She is more independent now (at college vs. home) so I’m trying to take better care of myself. I joined a discussion group for caregivers because my mother with Alzheimer’s just moved near me but I can’t keep up with three discussion groups – too overwhelming. I’m trying to put my health at the top of the list for a change and I’m getting there. Prior to Mayo I got much of my AS information from the Spondylitis Association of America which is a great resource.

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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

Well I suppose I could have been ignorant of the need for organ transplants too but PKD has always been a part of my life so it is not foreign to me. Thank you for helping me look at it from a different perspective. I continue to post facts about organ donation, especially living organ donations, and I’m not seeing much change but I know change takes time. I do get a better response during personal conversations so I have learned that the key is to know the facts so I can respond whenever the topic arises

My husband and I experienced similar reactions when our daughter died. People rarely wanted to listen to our grief but preferred to give us a few pat answers that were to make us all better. Our pain made them uncomfortable and I think my need for a living kidney donor might do the same thing. I’m just praying that God will provide a kidney for me when the time is right and in the mean time I will do what I can to educate people about the shortage of deceased and living kidney donors.

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@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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@contentandwell, @chattykathy
Well, even in our modern society, people remain sexist and do not interact with those with disabilities in an appropriate way. My freshman daughter is minoring in Disability Studies which is about changing the way people view disabilities and interact with those with disabilities and she continues to be amazed by pepeople’s ignorance. I’m just going to continue to post things about transplants and organ shortages and they can ignore it if they choose.

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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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@lcamino I am so sorry about your daughter. I can’t even begin to imagine how painful that must have been. I think death, particularly does make people uncomfortable — no one knows what to say and they know that no matter they do say it cannot possibly be of much comfort to the grieving family.
Hoping for a donor is a different thing in some ways but in some ways the same because there also people don’t know what to do. On the one hand they would probably like to reach out and help, but on the other hand that is a huge thing to do.
JK

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