Statistics on Altruistic Kidney donation?

[jtaver352]

Does anyone know where I might find statistics regarding altruistic kidney donation for the past 15 years in the United States? I have seen the UNOS.org site and find it a bit overwhelming. I also wanted to know how many others kept their donation journey "close to their heart" and only after the surgery are now sharing their story with others? I felt if I talked about it before the surgery...I would in same way be bragging and drawing attention to myself...and that just didn't feel right in my heart and head. I knew this wasn't about me...it was something bigger !!

[AMHulstine]

What sort of stats are you looking for? I talk about my donation, not daily, but when I can to educate and help spread awareness. I’m working on founding a non-profit, the 1 kidney club, I wanted to have a place where we could share our journeys and raise awareness, educate and support for donors and potential donors.

[marcyc NKF Ambassador NKF Peer Mentor]

There are stats on the NKF site. 2014 Unrelated Annon Donors 181. You should be proud to be a donor, altruistic, friend or family, you save a life. Sharing your story might help someone else make the decision!

[Hidden]

For what kind of stats are you looking?

As for telling your story, I say you can tell it without bragging. I tell people as often as I can about being an LKD to my husband not because I am bragging, but because I want to spread awareness. Believe it or not, many people do not realize you can live a healthy life with one kidney. Often people will look at me with an expression of surprise and ask me how I feel. I am two years post-donation, and I feel fantastic! I am a CHES and I want to educate people about living kidney donation. I tell them I am not a hero, I simply found a way to solve a problem. It gave my husband and me our lives back. You can be an advocate, an advertisement, if you will, for being an LKD without bragging.

[NDD_advocate]

Hi Jtaver325!

My name is Cody and I completely understand your initial point of view. For non-directed donors like ourselves, it often feels weird and self-aggrandizing to talk about donation. Personally, I've learned that my discomfort when talking to people was insignificant to the potential benefit of influencing someone to donate. For example, someone from my local news wanted to do a story on my donation. I eventually and reluctantly said yes, for the sole purpose of educating people about non-directed donation.

About 6 months later I received an email from someone who said they had just donated to someone after being inspired by the article written about my story.

I do a lot of research on Non-directed donors (you used the term 'altruistic,' which I find a bit ironic considering how rewarding donation is). Below I have listed similar thoughts from other non-directed donors about their struggle with creating awareness and the potential negativity received from others.

“I didn’t want any attention about it, but I’ve also learned now that it’s more about informing other people.”

- Russ Cupps

“It’s a weird thing, a weird thing to announce. It sounds very weird to people and I also didn’t want to run the risk of people thinking that I was self-aggrandizing, like look at me, I’m so amazing I give kidneys to strangers. . . Most of the time when people don’t know that this is an option it’s because they’ve never heard a story of someone having doing it. The reason I eventually decided to, you know, ‘go public’ with my donation was because of that.”

- Christine Gentry

“I am willing to work with you [the media] because I believe that if you tell the story others will be called to come forward.”

- Joyce Roush

“I didn’t want any publicity. I didn’t want anyone to know. Then three weeks after [the surgery] I got a letter from the recipient. . . When I read that letter and she explained the impact on her life particularly the everyday things that we all take for granted. I thought ‘It doesn’t matter what people think of me. It doesn’t matter if people think I’m showing off. It’s important that more people know and more people become aware.”

- David Hemmings

"We had this idea that there are a lot of people out there like me. They don't even know it's possible to donate a kidney to someone while you're still alive. Maybe if they see that I've done it, others will come forward and save someone's life."

- Doug Krammer

“The only reason for discussing what he thought was essentially a private act was to draw attention to a scheme of which many people remained ignorant.”

- Sam Nagy

“Why would people be critical of you?” “They seem to think that maybe I want some sort of fame out of it. . . The whole point of me speaking to the local papers because if I haven’t heard that ladies story on the BBC radio I wouldn’t have known that you could do that.”

- Catherine O’Brien

I can provide more information or citations if you would like to email me. Additionally, we have started a Facebook group of other Non-directed donors which can serve as a forum for questions like this. I am at your disposal at [e-mail], feel free to reach out.

[SoniaBrummer in reply to NDD_advocate]

Amazing!!

[Happydonor]

Dear jtvaer352 - thank you for being a donor, particularly an altruistic one. Just awesome that you did this. I was a kidney donor to my brother 7.5 years ago and we are both doing fine. I too was uncomfortable discussing my donation in the beginning but I soon came to realize that by discussing my kidney donation journey that I would raise awareness and help others become comfortable with becoming donors. Don't hesitate.......share your good news and inspire others to do likewise. Thank you again.

[SoniaBrummer]

Don't fear the light within you!

I personally think that when non-direct donors like ourselves talk about it, that feeling of bragging or weirdness, or any kind of uncomfortable is us feeling our light shine so brightly. So brightly that we are not used to it, we are not taught how to enjoy it. Let your light shine, soak it in, and spread it. Our language is clunky, and we try to describe that feeling with a negative tone because it is uncomfortable at first (guilty here too), but we should try to describe that feeling for what it is - our light!

People will look at you with all kinds of looks. Be ready to interpret them as their wonderment. Because that is often what it is. Or shock. Or impressed. Or simply hearing about something they didn't know was possible, so they need a minute to think. They might even be speechless. I'm sure you've seen it all now. Let them take it all in, and offer to answer any questions they might have. I find that they usually have a bunch of questions and the conversations end up being really fun.

[jtaver352]

Your responses/inspirations are heart warming. I walk a little prouder now.

[maryalraines NKF Ambassador]

All I can give is from a personal standpoint. I just turned 70. Much like your dad I have always been very active physically & mentally, even having my own business in medical research.

I will have my transplant 3 yrs 11/4 and have done really great. Able to do everything I did before dialysis (hemo). I did not have HBP or diabetes which may be why his kidney had problems? So I feel if he could get that controlled it would decrease his risk for problems afterwards- something to discuss with his dr.

If you are wanting to donate to him I’d suggest you visit with his dr since he/she would know his condition and probably have a good idea as to the outcomes.

I will say, my dr says he wishes all his pts were as diligent as I am because I do everything by the book and yet I know there are still risks.

[Kbressler NKF Peer Mentor NKF Ambassador]

You my friend are a true hero in every respect as are all the other donors. It is the ultimate gift. My brother gave me one of his kidneys 31/years ago so I know.