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Social Media Stole My Kidney!:
A story about a girl who donated a kidney because of a tweet
Amy Donohue (that’s me!) saw a tweet one night in January 2011. A friend’s mom had just agreed to be put on the kidney donor list, as her kidney disease was getting worse every year. Amy saw the tweet and responded “I’ll do it. I’ll donate my kidney. What do I have to do?”
During the testing process, Amy lost her job, got a new one, met amazing people in the community, and learned about life and love.
So, it’s a documentary about a kidney donor on a cross-country trip. Her goal? To meet as many other donors as she can, tell their stories, and bring awareness to live organ donation. All of the donors were “met” via Social Media. By showing all these donors living normal, happy lives, people will be less afraid to donate and hopefully be inspired to do the same!
People are asking me every day what they can do to help. We will be having fundraisers, but the thing we need the most help with right now is contacts. We have emailed major hotel chains, but nobody has gotten back to us. If anyone has any contacts in that industry, it would be greatly appreciated! We will also be needing new camera equipment. I’ve reached out to Panasonic and JVC, to no avail.
Hey, I live in Calgary Alberta Canada and in April 2011 I had a living double lung transplant. Not sure if you would be interested in talking to me about your documentary or not. I am the 7th one they’ve done in western Canada.
Hi Deanna! The film is to showcase donors, so that people can see we live happy, normal, healthy lives post-donation. I take it your donor was deceased?
Looks like you are heading to Calgary – you have to meet Lauren Herschel. She donated her kidney altruistically. http://tomakeachoice.blogspot.ca/ And four weeks ago today my husband donated his kidney for my sister as part of a 3-pair living donor exchange. http://jacquelinenemeth.com/ There are so many amazing stories out there – incredible that you are going to showcase them. If you make it to Ottawa – capital of Canada – let me know.
I actually do know Lauren! We donated around the same time. I met her on Twitter right around my surgery last year. Let me talk to my Director about the route. ~Amy
Hi Amy, a friend of yours on Reddit gave me your information. I’m looking into doing altruistic kidney donation here in Phoenix. I’d love to chat with you about your experience. You can email me at lya.gardner@gmail.com. Cheers 🙂
AWESOME!!!! I’ll email you today, Lya!
I just found this site and have not read through much of it yet. But it sounds like a wonderful idea.
I am a kidney patient in need of a kidney.
I am curious about what you want from the major hotel chains? Is it lodging while on your journey? If so, have you thought about other types of lodging? Perhaps vacation homes?
Hi, Jean!
Thanks so much for reading!! We are looking for lodging along the way. Vacation homes are a good idea, too! Thanks for the suggestion!
Amy :}
I have a three bedroom vacation home near Somerset, KY. Let me know if and when you might be in that area and I will see what kind of arrangements can be made.
Jean
Oh my gosh, Jean, that’s awesome! We will be hitting Kentucky on the way back, which may end up being near Memorial Day. Do you usually rent it out then?
How many rooms do you need? We have a large home and could possibly put some up. 30 miles north of Baltimore.
Wow, thanks, Pam! There are only two of us. I think a local hotel is donating us rooms that night, but I will definitely let you know. Thank you SO MUCH for the offer!
Amy
When will you be in the Baltimore area?
Just celebrated two years since donating my kidney. I’m now on advisory committee of Kidney Foundation of Canada planning fundraising events: the most recent was an October, 2012 gala evening with Natalie Cole! Here’s my donation story featured: http://wowsstillbeingcelebrated.yolasite.com/n-jacobs.php. Good for you, Amy! You are certainly a great example of making opportunity knock!
Are you aware of http://www.kickstarter.com, a fundraising platform for creative projects? Also, have you approached your donor hospital foundation, kidney organization, etc. for support? Where are you located and where do you plan to travel? I’m interested in more information about you and your intention in order to think of possible contacts. If you don’t mind, email me so we can brainstorm.
Hi Nellie! Yes, I have looked into Kickstarter. I actually may be able to forgo that route, though, with investors.
Congrats on also being a donor!!! Do you know Lauren Herschel?
Cant wait to see the finished movie! I was aware of organ donation and always said I would be an organ donor. At the time of my decision I thought that would be great to help someone else once I pass. Little did I realize at the time that there is also living donation but was made more aware of it when my stepdad was diagnosed with PKD in 1999. He was then put on the transplant list in May of 2012. I began the process of being the potential donor in July 2012 and was found to be the match in Oct 2012. Our donor/transplant surgery was Nov 29th 2012 (almost 6 wks ago) and we are both doing great. If I can be of help please let me know. Thanks for what you are doing.
That’s awesome, Lauri!!! What a Thanksgiving gift you gave. Any help with sharing about this project would be great. Where do you live?
Hey! Do you use Twitter? I’d like to follow you if that would be okay. I’m absolutely enjoying your blog
and look forward to new updates.
I do! Twitter is how I lost my kidney in the first place. Hahaha! I’m @TheFabulousOne, but I gotta warn you: she’s a bit out of control. :} What’s yours?
Amy, I love the concept of what you’re doing with the movie. You’re personal story is amazing….such an unselfish loving act, you were fearless and brave. You truly are very special!!!!!
Wow, thanks Kristin! My bravery came from the support of everyone around me! I couldn’t have made it without you all!!
XOXOXO
Wow! I donated a kidney to my boy friend in October of 2012. I feel great. A friend of mine sent this to me via face book. Because she thought this was perfect for me. Me and my boy friend are celebrating our third year anniversary this week end and we met on Face book. I blogged about my experience on tumblr. The blog name is mykidneyadventure. Read about us. We had plenty of support, held fund raisers with the help of an organization called Help Hope Live. You have got to contact me. This is our life and we would love to help. Deneen126@yahoo.com
Thanks, Deneen! I’ll be emailing you later today.
My hubby works law enforcement and donated to our son we are at 5 1/2 years.
Hi, I am also a kidney donor but my story starts even before my donation, 5 years ago my father in law who suffers from diabetes was in need of a kidney I was tested as potential donor but sadly was not a match (it was heartbreaking because based on his blood type he would be a universal donor but was very limited to who donate to him) so after several other family members being tested it was looking very grim his Dr’s told him he would need to start dialysis because his kidney fuction was quickly deteriorating. A co-worker of my mother in laws (teacher at the school she works in) heard about my father in laws condition, prayed on it discussed it with her husband and she decided “if I was given two (kidney’s) and only need one, how do I know it wasn’t meant for one to be given away”, with that she went to be tested. Initally she was turned away because she had never even met my father in law, so she was asked to meet with him first before deciding that she wanted to go through with the testing. She and her husband met with my in laws and ultimately decided to move forward, she was tested and was a perfect match!! They are both living happy healthy lives.
Three years ago I learned that a co-worker (single mom, just married and only 29) was in need of a kidney transplant. Since I wasn’t able to help my father in law, I wanted to pay it forward on behalf of the person that did. I was already on file at Mayo (and knew we had the same blood type) from being tested for my father in law I asked if it would be OK to move forward with the rest of the tests to see if I was a match for her. After all testing it was determined that I was a match for Randi, less that a few weeks later we were in surgery. The transplant was a success I feel great as does she and since then she and her husband have welcomed a beautiful baby girl to their family.
We will be participating in the AZ Kidney walk next month, our team name is Recyled Parts. 🙂
Bonnie that is the most awesome name for a team ever!!! Thank you so much for contacting me. How is Randi doing?
See you at the kidney walk!
Amy
Hi Amy,
I live in Louisville Ky and donated a kidney altruistically Dec 2011. If you pass through Louisville let me know
That is awesome, Candy! Did you check the map? I am not sure how close we will be getting to you. Would you mind emailing me a picture and donation details? Date, where donated, etc., is what we are looking for. Though we already have everyone who will be interviewed, we will be having photos of you all throughout the film.
Thanks for contacting me!
Amy
What an awesome story. Your friend, Stacey Champion, suggested I read your story. My husband gave me a kidney 10 years ago and because of this gift, I gave him son! Best of luck to you.
http://www.michronicleonline.com/index.php/living-well/10187-challenging-condition-kidney-transplant-recipient-shelia-jackson-helps-others-cope-with-kidney-disease
OMG Sheila that is so awesome!!! Thanks so much for your support.
XOXOXO
Amy
Hello, this Randi I’m Bonnie’s recipient. Thank you for checking on me, I feel great since the birth of my daughter.
Can’t wait to meet you at the kidney walk!
Hooray!!!!
hello,
my names are Robert Lawson, a 38 years old, the doctor confirm that my two kidney well OK that i can use one kidney, and i want to give out one of them to who ever needs it, because in my life i made a var that i will save life know matter what it will take from me. of what use it is to me if i can not help that one ding soul. do not ask me why, because it is what i have made up my mind to do.
i pray that you will not die but live.
You can contact me on Email: agbatorlawson@gmail.com
Mr Lawson.
I just heard your interview on NPR & was brought to tears. Then I realized you are right here in AZ!!! I donated a kidney to my brother once I was old enough to do so, and it was never even a “decision” to consider. After almost 10 years, my kidney failed him sadly, and he has been on the “waiting list” ever since. 🙁 I applaud what you are doing to raise awareness, and would love to offer to help out in any way. I have a gallery in Downtown Mesa if you ever need a place to hold an event/fundraiser/gallery show to raise awareness/funds!
Wow, thanks, Amy!!!! You found me everywhere today. Hahahaha!
I’m so sorry to hear about your brother. This film will get raise awareness and get him that kidney!
Hi Amy. I heard you on KJZZ with Steve Goldstein yesterday. Good for you and your kidney recipient. Today my cousin and I are celebrating the two year anniversary of our miracle. He suffered with PKD for several years so I gave him my left kidney at Legacy Good Samaritan Hospital in Portland, Oregon. My husband and daughter and our dog, Hazel, traveled with us to Portland for support and our entire family and our friends were praying for us. Greg’s sister, Karen, made them test her twice before she gave up because she was not a match. When I heard about Greg’s situation and found out we shared the same blood type I volunteered to be tested. We had an aunt who suffered with PKD for many, many years and I didn’t want any other loved one to go through years of dialysis like her. Of course, from all the tests I found out I do not have PKD so I could donate to Greg. Also, because I’m clear of that disease, I didn’t give it to my two children. I’ve been ready to spread the word for awhile. We have a Donate Life plate on our car. The hospital gave me a sweatshirt that says “Got 2, Give 1, I’m a living kidney donor” so our plate reads GT2GV1. You may hear from my Greg too. He has so information much to share from the point of view an intelligent and very grateful recipient. We’ll be looking forward to your documentary. Best wishes. Tina Shantz Mullen
Thank you so much, Tina!
I’m so happy to hear that not only could you donate, but that you’re kids aren’t at risk for PKD! When I hear about families that are affected by it, multiple sick people, my heart breaks.
Please email a picture with the date & place (hospital) of your donation. Though we can’t add anymore interviews, we will be having a photo montage of all the other donors who have kept in touch with me.
LOVE the license plate!
Have a GREAT Friday!
XOXO
Amy
On October 9th 2012, my 20 year old daughter donated her kidney to save the life of my 15 year old son. He had been on dialysis for 14 months and was getting sicker. It had truly been a blessing! We did post out need for a kidney on social media and several people stepped up to offer their help. However, unfortunately we could not find a match – until my daughter was tested.
That’s awesome, Donna! So glad your daughter ended up being a match!
It was great to finally meet you in person Amy! I hope the rest of your trip goes well! Love ya!!
It was awesome, Karol!!! Thanks for feeding us! XOXOOXO
I saw the article in Az Central and was very moved. I think what you’re doing is awesome. This is a great story that needs to be heard.
My niece was born missing most of her cerebellum and will be in special need for her whole life. She’s a very happy if unhealthy 21 year old now.
A few years ago she got pretty sick. Her kidneys were bad. She needed a new one. I know it’s easy to help those you love but she’s especially sweet, has been all her life. It was very easy for our very large family to come together on this and do what we could.
I was unable to donate a kidney because I’m HIV positive but everyone else that could soon had tests done and my little brother, he’s 32, was a match. He happily gave her a kidney and they both came out of it well.
If you are interested in interviewing them contact me and I’ll see what I can do.
Thanks so much, Ben! While I don’t need anyone else for this film, that doesn’t mean I won’t need more donors in the future! I really appreciate you reaching out to me. By the way, they can now take donations from those who are HIV+, as long as they have kept up on their meds.
Your support means the world to me!
Amy
Hi Amy. I’m in the process of becoming an altruistic donor myself. I’ve been fully approved and my surgery is currently scheduled for June 4th. And there currently exists the possibility of my starting a 3 transplant donor chain. My coordinator is currently working the matches and in discussions with one of the pairs. I was motivated to do it by having read a story about an altruistic donor a few years ago and then finding out last year that my good friend’s wife had gotten her life back thanks to a kidney donation from a friend. And I wanted to help give someone (anyone) a chance at getting their life back.
That’s awesome, Todd! I’ve learned a lot about chains the past couple weeks. Thanks for writing!!!
I also donated a kidney from a request on Facebook…. So happy I did. Come to Minnesota 🙂
Hi Liz!
We were in Minneapolis in May! 🙂
I have a rare kidney disease called Gitelmans Syndrome. My older sister Michele has it too. Its chronically low potassium,magnesium,calcium,sodium,folic acid levels. After sooo many hospitalizations, weekly infusions 5x a week and taking many many daily meds,dr FINALLY AGREED its not enough and we in fact,need new kidneys. They would take out both kidneys and put the new beautiful kidney the donor provides. I am absolutely scared and absolutely excitedsick of being sick so to speak.got the referral to see transplant dr. Friends are asking about testing NOW as this disease is genetic family cannot donate.we need a living donor as well.
Hi Angie!
I’m so sorry to hear that. I have never heard of Gitelmans Syndrome, but it seems there are a lot of different “afflictions” that have to do with kidneys. You are more than welcome to post your needs (blood type, etc.) on our Facebook page:
https://www.facebook.com/SocialMediaStoleMyKidney
Please keep me updated. If you do get someone willing to test, I am always available for them to ask me questions. I didn’t have that, and I wish I had!
XOXO,
Amy
I have actually been seriously considering donating a kidney and doing a documentary myself. I just left a conference in which I was discussing this with a someone who told me about you. My vision is to document a beginning (from the thought process and how long it took to make up my mind) through the recovery process. I would want my identity to be hidden so it wouldn’t be about me but instead it would be about the gift. Any guidance you can give me would be appreciated.