Patient Information

Live Donor Toolkit

The shortfall between the demand and availability of organs for transplantation has never been greater. As of June 1, 2016, there were over 120,500 candidates awaiting transplantation. Last year, the United States performed 30,970 transplants- which would address just over a quarter of the number of individuals currently waiting for an organ.  These transplants were completed due to the gift of life from 15,066 organ donors in 2015, including 9,080 deceased donors and 5,986 living donors. While the numbers of both deceased and living donors were slightly up last year, there is still a critical shortage of organs for those in need.

Medical and psychosocial outcomes for live donors are generally quite good, and a reassuring 97.5% of live organ donors say they would donate again if they could. Living donation is a profound way to help a loved one—or even a stranger-- in need. That said, individuals considering living donation must consider the potential medical, psychosocial, and financial impacts associated with donating an organ.—and the transplant community currently lacks a centralized forum to provide education about live donation.

The AST's Live Donor Community of Practice (LDCOP), with the support of eleven other organizations, convened a Best Practices in Live Donation Consensus Conference in 2014, composed of a diverse group of transplant professionals, people with ESRD, and live donors. A high priority recommendation stemming from this meeting—achieving consensus amongst participants—was the creation of a centralized, neutral, high-quality live donor educational toolkit for those considering live donation. This resource is meant to: (1) improve the availability and delivery of quality education for those already considering live donation; (2), broaden live donation messaging to reach others, who might consider live donation if they knew more about it; and (3) reduce ‘recreating the wheel’ in educational content development across transplant centers. 

Following the consensus conference, and with strong support from the AST Board of Directors, an engaged group of 26 transplant expert LDCOP volunteers got to work building a series of pull-out educational chapters aimed at patients and professionals. These are housed under two umbrellas: the Live Donor Financial Toolkit and the Live Donor Medical Impact Toolkit, each with 10-15 stand-alone chapters. The Medical Impact Toolkit will have chapters written at the provider level (for primary care physicians and community nephrologists) and at the patient level.   

 

Live Donor Financial Toolkit

We are pleased to introduce the first phase of this project, the Live Donor Financial Toolkit. As the Toolkit grows, it will be housed on its own website and will include Spanish versions multi-media options and to expand its accessibility for those wanting to learn more about living donation.

Financial Toolkit Introduction

Section 1 - Living Organ Donation Cost-Estimation Worksheet

Section 2 - National Living Donor Assistance Center (NLDAC) - How to Apply

Section 3 - Nonprofit Sources of Financial Assistance for Living Donors

Section 4 - Living Organ Donation for Members of the U.S. Military

Section 5 - Fundraising for Living Donor Expenses - Q&A

Section 6 - Insurability After Kidney Donation - Q&A

Section 7 - Living Donation and Employment

Section 8 - State and Federal Laws Related to Living Donation


Live Donor Financial Toolkit Authors and Editors:
Rebecca Hays, APSW (U Wisconsin) (Project Developer)
Kirsten Fischer, LCSW (Sanford Health System)
Cheryl Jacobs, LICSW (UMN) (Project Chair)
Mara Hersh-Rifkin, LCSW (UCLA)
Charlie Thomas, LCSW (Banner Good Samaritan)
Lara Tushla, LCSW (Rush Transplant)
Holly Warren, RN, CCTC (NLDAC)

Live Kidney Donor Medical Toolkit

As the next phase of this project, we are pleased to provide the Live Kidney Donor Medical Toolkit. Below you will find information for live donors to give to their medical providers. Stay tuned as a version for patients is well underway! As the Toolkit grows, it will be housed on its own website and will include Spanish versions multi-media options and to expand its accessibility for those wanting to learn more about living donation.

Medical Providers:

Section 1 - Risk of ESRD for Living Donors

Section 2 - The Risks of Donor Nephrectomy Surgery

Section 3 - Living Donors with Pre-diabetes

Section 4 - Hypertension in the Living Donor

Section 5 - The Obese Kidney Donor

Section 6 - Donors with Stones

Section 7 - Living Donors with Metabolic Syndrome

Section 8 - Live Kidney Donors with Microscopic Hematuria

Section 9 -  The Living Donor who is at Risk for PKD

Section 10 - Pregnancy Outcomes after Live Kidney Donation

Section 11 - Living Donation in Paired Exchange: How is it Different from Traditional Donation?

Section 12 - Non-Directed Living Kidney Donors

Section 13 - Psychosocial Risks of Living Kidney Donation

Section 14 - Live Donor Informed Consent Process - Regulatory Guidelines, Challenges, and Considerations in Protecting Donor Voluntariness


Live Kidney Donor Medical Toolkit Authors and Editors:

David Serur, MD (New York Presbyterian Hospital-Weill Cornell)
Sandra Taler, MD (Mayo Clinic)
Todd Pesavento, MD (Ohio State University)
Choli Hartono, MD (New York Presbyterian Hospital-Weill Cornell)
Krista Lentine, MD (Saint Louis University Medical Center)
Jane Tan, MD, PhD (Stanford University Medical Center)
Dianne LaPointe-Rudow, ANP-BC, DNP, CCTC (Mount Sinai Medical Center)
Rebecca Hays, APSW (University of Wisconsin)
Elisa Gordon, PhD, MPH (Northwestern University)
M. Amanda Dew, PhD (University of Pittsburgh)
Roxanne Taylor, RN, MSN (Maine Transplant Program)
Marian Charlton, SRN, RN (New York Presbyterian Hospital)
Didier A. Mandelbrot, MD (UW Health)