How do you advocate for others waiting for transplantation?

Ldybug97

Spreading Hope and Advocating for others Check out my interview on a NJ Morning Show

https://www.onnj.com/videos/nj-morning-show-lavise-kidney-funraiser/

Kouimet

I think it is important to check in regularly with the people who are waiting. The caregivers, the family members and the patient. Each of them are expereincing something unique and personal and it evolves as time goes by. You dont have to have answers or be able to do anything, just check in and let them know you are thinking of them and ask if they need anything. Dont offer unsolicited advice or try to compare feelings or experiences, just be there. And it doesnt have to be transplant related things to be there for. It can be mundane life things. Grab lunch, watch a ball game, go to a movie or just be a caring human connection.

Ldybug97

@Kouimet Very good ways of supporting others in their time of need. I agree 100%

Deb

One of the first things I do is to tell them about Transplantlyfe and how I wished I knew about during my waiting period. Then I offer to do all I can to help with travel, shopping things that I knew helped me. I share my phone number and tell them I’m just a call away. One person keeps in touch the other is not doing well with the whole transplant thing so I check on her family. That’s all I know to do.

Ldybug97

@Deb I think all you are doing is making a difference

AliEm14

I second @Deb and @Kouimet

I offer to be a sounding board, direct them to communities I'm part of, let them pick my brain if they want to, connect them to resources... Every person is so different, and some want to know everything transplant related and some don't (I definitely didn't when I was waiting), some want to talk about their feelings, some don't. I'll try to pick up on cues of whoever I'm talking to and follow their lead. A lot of the time that just looks like going out to do something fun, arranging for them to have a little self care time, sending them some treats. Be that human connection, because we all like to know we're important and cared for. This is for patients and care givers!

Thanks for sharing your clip @Ldybug97 - I know you're making a huge difference in advocating for organ donation in your community, and your story makes such a difference

Ldybug97

@AliEm14 I think what you, @Kouimet and @Deb are doing make a major difference. I think I had this community or even someone who had gone through the process it would have lessened my anxiety some. I kept a lot of things to myself because I felt my family and friends could not handle what was happening. I felt that I was educating my family with the little I didn’t know, even if we do not think for doing as much as because one conversation can change a person.