I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on July 07, 2014, 01:34:53 PM

Title: Using social media to find a kidney donor
Post by: okarol on July 07, 2014, 01:34:53 PM
When Jenna was first wait listed in 2004, we were told "no strangers" were to be brought for evaluation to donate a kidney to her.
When she had her first transplant 7 years ago, the restriction from transplant hospital excluded finding a donor from Matching Donors, but other than that they were willing to look at each potential donor on a case by case basis, and her donor was someone we met online.
Now many hospitals are more open to evaluating donors from varying modes of contact, as long as they are not asking for payment or anything of value in exchange.
We have run Craigslist ads, which are not allowed on Craigslist, but most of the time they seem to look the other way if no one flags it.
Quite a few people have offered but few follow through.
Our friend Mark made a video about Jenna two years ago which we share on twitter, Google+ and facebook. It's gotten over 13,000 views on youtube, which resulted in a few offers, but no matching donor, it's here if you haven't seen it http://youtu.be/D9ZuVJ_s80Y
We have posted about Jenna on her kidney donor search facebook page - also have gotten some offers via facebook and one actually made it through all the testing until a CT scar revealed he had arteriosclerosis and could not donate.
Because Jenna has high antibodies she is tough to match, so I keep spreading the word, and hoping for the best.
Has anyone else been trying to find a donor using social media?
If you're on facebook and haven't already done so, would you please LIKE and share Jenna's page www.facebook.com/wantedkidneydonor - it would be most appreciated.
If you want to make your own donor search page on facebook let me know and I can help.
I don't know what else to do. Thanks for reading.
Title: Re: Using social media to find a kidney donor
Post by: Ninanna on July 07, 2014, 03:16:50 PM
Done

Somewhere out there is Jenna's donor and I have no doubt you will find him/her Karol.  :grouphug;
Title: Re: Using social media to find a kidney donor
Post by: Deanne on July 07, 2014, 03:46:23 PM
I know of someone at work who found a donor though our internal message board. Something like that might be another option. If there isn't an online message board, maybe paper postings on old-fashioned cork bulletin boards?
Title: Re: Using social media to find a kidney donor
Post by: Ninanna on July 07, 2014, 05:54:50 PM
My post struck a chord with a friend who is type O. I don't know if she will follow through but I pointed her your way :)
Title: Re: Using social media to find a kidney donor
Post by: okarol on July 07, 2014, 06:13:57 PM
My post struck a chord with a friend who is type O. I don't know if she will follow through but I pointed her your way :)

Thank you!
Title: Re: Using social media to find a kidney donor
Post by: okarol on July 07, 2014, 06:14:36 PM
I know of someone at work who found a donor though our internal message board. Something like that might be another option. If there isn't an online message board, maybe paper postings on old-fashioned cork bulletin boards?

I need to make a flyer as a friend said she could post one at work.  :thumbup;
Title: Re: Using social media to find a kidney donor
Post by: codyedwardwilliams on February 17, 2015, 11:40:12 PM
Since most people are active to social medias, posting help for kidney donor might be a great help. Good luck to this guys!
Title: Re: Using social media to find a kidney donor
Post by: okarol on February 28, 2015, 12:54:34 AM
Since most people are active to social medias, posting help for kidney donor might be a great help. Good luck to this guys!

Thanks! So far the youtube video and facebook page have resulted in about 80 people contacting the transplant hospitals (she is listed at 2.)
Some of them were ruled out due to high BP or BMI. Others didn't complete the health questionnaire, and some didn't follow through with getting labs done.
Six people actually tested for her.
No one has matched because Jenna has 100% antibodies, but she now has 3 living donors in 2 paired exchange swap programs.
Hopefully something will work out for Jenna!