A Living Kidney Donor's Story Creates Living Donor 101

I launched Living Donor 101 after donating a kidney to my sister Mary (L).

My experience at the World-Renowned Cleveland Clinic Foundation disturbed me - as a counselor and as a living donor - and my subsequent research revealed some very frightening and ethically unacceptable policies and facts about how living donors are treated both before, and after, transplant.

- The lack of true informed consent

- total absence of aftercare or support services for living donors

- the drought of data on psychosocial complications and issues .

I was horrified to discover that the medical community had been using living donors for over 50 years, but had never bothered to track or study them comprehensively. Their claims of 'safety' were really nothing more than propaganda.

Being a Living Donor is a spectacular act of generosity, and the experience is as unique as the lives touched by it. Where the system fails is in relegating us to second-class citizen status the moment the needed organ is removed. I have spoken to numerous donors, some with successful outcomes and some not, and they have expressed the same concerns. We deserve better, the same consideration as recipients, and with your help, Living Donor 101 can be a step in that direction.

I would like to hear from you about your donor experience. Things you wish someone had told you, or ways the system/process can be improved. Please send your stories and comments to: DonorStory {at} LivingDonor101.com.

About me:

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

I spent eight years as a content editor and music journalist, and have numerous publications as a freelance writer.

Recently, I was invited to apply for a position on UNOS/OPTN's Living Donor Committee, and I participated in a teleconference for the Obama-transition team on improving the living donor transplant system for Secretary of Health.

I am also a public speaker, performer and small business owner.

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

I am available as a speaker or resource on the importance of organ donation, the living donor experience, issues facing living donation and the ethics of living donation. Please contact me with date, time, location, special requests, and any relevant fee or stipend.

**A huge THANK YOU to Dr. Dave Purcell at Kent State University and Dr. Stacey Nofziger at University of Akron, for feeding my information habit with various research journal articles on living donors and organ transplantation; and to Donna Luebke from LODAP for her invaluable knowledge and friendship.