About Living Donor 101

I launched Living Donor 101 after donating a kidney to my sister in August 2008.

My experience disturbed me, both as a trained therapist and as a living kidney donor . My subsequent research, begun for my own personal healing and understanding (and because there were no resources available), revealed some very frightening and ethically questionable history/facts/issues regarding living donors' care before, during and after transplant.

Including:

- the variable nature of informed consent.

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

- 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.

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

The medical community has been using living organ donors for nearly 60 years, but never bothered to track or study them . No one even bothered to collect living donor social security numbers until 1994, leaving the fate of 40 years of living organ donors completely unknown!

Being 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. The system fails because it never sees us as patients equal to the transplant recipient. And when we speak out, we're called attention-seeking or impassione - or my personal favorite, bitter.

I have spoken to numerous living organ donors, some whose recipients have fared well and some who haven't, and they have expressed the same concerns. We deserve the same consideration and respect as other surgical patients and human research subjects. With your help, Living Donor 101 can help achieve those ends.

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

Please send your stories and comments to: Cristy {at} LivingDonor101.com. (Fill out the survey too)

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, 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.

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.

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

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

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.

More about me and my other projects here; my business, Conspicuous Chick Enterprises here

Follow @LivingDonor101

**THANK YOU** to all the folks who've fed my information habit with research journal articles; to the behind-the-scenes truly Independent Donor Activists for their help when I was still learning how to walk.

Last updated: February 3, 2012.