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Rosemary, Volunteer Mentor (@rosemarya)

Celebrate your Transplant Blessings

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

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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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Replies to "Hi @rosemarya. We chat once again. I've been posting things on Instagram (only social media I..."

@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
“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

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.

@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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