Contact: info{at}livingdonor101.com

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Living Donors Are People Too - Blog Keep up with the latest in living donation news, research and topics (click graphic above).

 

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Improve living donor protections by telling your living donor story HERE

 


Living Donor 101's mission is to educate the public, especially prospective and current living kidney and liver donors, about living donation related topics. Because the site quotes, paraphrases or references many published research articles or bureaucratic policies, its tone can, at times, be less than entertaining. We can't all be Sesame Street, right?

Becoming a living kidney or liver donor is an incredible sacrifice and act of generosity; the experience is as unique as the lives touched by it. But because the transplant system evolved around the needs of the recipient, and was never intended to include thousands of living donors annually, it often fails us. The transplant industry can intentionally or unintentionally prioritize the recipient's need for treatment over living donors' safety. Because of that, LD101 also advocates for better protections, considerations and care for living organ donors.

 

The following are a smattering of the issues LD101 discusses:

 

- the inadequacy of living donor informed consent.

- the lack of nationalized standards of evaluation, selection, treatment and care for living organ donors.

- the dearth of clinical evidence supporting transplant centers' living organ donor policies.

- the absence of aftercare or support services for living organ donors.

- the drought of data on, and neglect of, living organ donor psychosocial complications and issues.

- the lack of comprehensive data on living organ donors' health and well-being - and the need for a living donor registry.  

 

I've spoken to numerous living organ donors over the past few years: some whose recipients have fared well and some who haven't, and they've all expressed the same concerns. Living organ donors deserve the same consideration and respect as other surgical patients, and the protection afforded human research subjects. With your help, Living Donor 101 can work toward these goals. 

I would like to hear from you about your living donation experience. Especially regarding the information you wish someone had told you, or how the system/process can be improved.

Consider yourself invited to fill out the living donor experience survey.

Or send your stories and comments to: Cristy {at} LivingDonor101.com.

 

In the meantime, take care of yourself.

- Cristy

 

I believe the most effective means of change is through education. Consequently, I am available as a speaker or resource on the living kidney donor experience, the ethics of living organ donation, grief and disenfranchised grief in the living kidney or liver donor, the psychological consequences of living organ donation, and deficiencies in the transplant industry. Please contact me with date, time, location, special requests, and any relevant fee or stipend.

If you'd like to keep up with the latest on living donor issues, refer to the accompanying blog, Living Donors Are People Too.

 

 

About me:

Master's level counselor, I have worked with troubled teens, domestic violence survivors, drug abuse and treatment, HIV community, and a variety of clients in a community mental health center.

Spent eight years as a content editor and music journalist, and have multiple publications as a freelance writer.

Proud parent and foster parent of retired racing greyhounds since 1996. Board member 2009-2012.

And I'm a living kidney donor, of course.

 

Advocacy Stuff:

Participated in a teleconference for the Obama-transition team on improving the living donor transplant system for Secretary of Health.

Received some love in the form of a profile in my undergraduate alma mater's alumni magazine, 2009.

Participated in a discussion on living donor ethics at Case Western Reserve University.

Profiled by CNN's Elizabeth Cohen in 2010 about the risks of living donation.

Quoted by Deborah Shelton in a Chicago Tribune article about independent advocates' fight for information on the risks of living donation in 2011.

Quoted by Associated Press reporter EJ Tamara, also a living kidney donor, in March 2013.

Presenter, "Have We Done Enough To Protect Living Kidney Donors", at the 2nd Annual Bioethics Conference at NEOMED, April 2013.

Quoted multiple times by Megan Carlson in "Risks of Living Organ Donation not 'Sinking In', Researcher Says", April 2013.

 

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While I'm not a member of NAHAC*, I am guided by their Code of Ethics, as posted here. I also refer to the American Counseling Association's Code of Ethics whenever applicable, since it was a formative part of my professional development.

 

*Because of the $175 annual fee. LDM/LD101's only revenue stream is from merchandise sales, so all website and otherwise associated costs mostly come out of my own pocket.

 

Last updated: April 26, 2013.