Survey – The Living Donor Experience

At LD101, we believe in the power of personal narration as a means to heal, educate and affect change. To that end, we use the information provided in this survey to improve our understanding of the living donor experience, identify areas in need of attention, set goals, and provide needed services. All information is kept confidential unless otherwise indicated*.

In addition, we aim to send representatives to ACOT and other public policy organization meetings, utilizing the public comment segment to detail the trends in the information gathered from these surveys or read an entire living donor’s story aloud. Not only does this force officials to confront the reality and consequences of the policies they’ve developed, it adds the living donor narrative to the meeting’s permanent and public record.

If you do not wish your story to be used in this way, please check the box at the bottom of the form.  We  respect your privacy.

- Only one person views the surveys with all information as submitted. Identifiers will be removed upon request prior to any public reading as described above. Identifiers will be removed if/when any additional individuals view the narrative and/or data –  no exceptions.

- There is no financial compensation for completing the survey.

- Someone from LD101 may initiate contact via email to follow-up or offer assistance and/or resources.

- In the future, this collection of narratives may be analyzed for publication in some form or other. If so, all identifying information will be removed, and attempts will be made to contact (via email) individuals who have contributed their stories.

Some Tips:

-Wait until at least one year after your donation before completing the survey. This provides a bit of self-reflection and distance from the experience. (If you have questions, are in distress, or would like to talk to someone, please send email at cristy{at}livingdonor101.com)

-Answer the questions as if you were talking to a friend. The more details, the more helpful your contribution.

- There is no reason to say “I’d do it all over again” or “I don’t regret donating” or any such other variation. Telling your story and expressing what you need, want and deserve is no reflection on your feelings toward your recipient, nor is it a betrayal. Every living donor has the right to ethical and sound medical treatment, and the right to speak out.

Any additional questions, suggestions or concerns can be sent to donorstory@livingdonor101.com

Thank you for your bravery and candor!