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Living Donation Forum / March and April 2024 Living Organ Donor Anniversaries

« Last post by Clark on April 19, 2024, 03:06:33 PM »

March and April 2024 Living Organ Donor Anniversaries

With World Kidney Day annually on March 14th, and April being National Donate Life month, more than usual attention to the needs of so many patients are in the news. We have responded personally to ameliorate the suffering of so many in need of transplants. Rosemarie 47 years ago! Christine, Stacey, and Daniel 25 years ago! Luis and Becky 10 years ago! Bravo to all for doing so much on behalf of another. Condolences to those of us still grieving, or suffering personally, still. Best wishes, all!

Forty-seventh anniversary:
Rosemarie Gower Kelley's older sister donated a kidney to her on March 17th, 1977

Thirty-eighth anniversary:
Grace donated a kidney to her daughter on March 17th, 1986

Thirty-seventh anniversary:
Andrew Drukker donated a kidney to his sister, Sue, on April 10th, 1987

Thirty-fifth anniversary:
Mychelle Rucker donated a kidney to her brother on March 9th, 1989

Thirty-fourth anniversary:
Chris Tomola donated a kidney to his brother on April 25th, 1990

Thirty-second anniversary:
Tony Fagan donated a kidney to his sister on April 8th, 1992
James D. Breyer donated a kidney to his sister, Susan K. Starcher, on April 22nd, 1992

Thirty-first anniversary:
Ronald E. Harper donated a kidney to his spouse, Barbara J. Harper, on March 23rd, 1993. "Kidney survived 18 years.”

Twenty-eighth anniversary:
John donated a kidney to his friend Anne on March 11th, 1996
Michalene J Dischinger donated a kidney to his sister, Judith Cleveland, on April 3rd, 1996

Twenty-seventh anniversary:
Dan donated a kidney to his daughter on April 4th, 1997
Barbara Day donated a kidney to her husband on April 9th, 1997
Christine Rowe donated a kidney to her nephew on April 10th, 1997

Twenty-sixth anniversary:
Gina Thor donated a kidney to her brother on March 3rd, 1998
Maxine Tierney donated a kidney to her sister, Hunter Mahon, on March 17th, 1998

Twenty-fifth anniversary:
Christine Hayes donated a kidney to her friend, Naomi Pollard, on March 18th, 1999
Stacey donated a kidney to her aunt, Cheryl, on April 1st, 1999
Daniel Lasater donated part of his liver to his sister on April 7th, 1999

Twenty-fourth anniversary:
Susan Molloy donated a kidney to her husband, James, on March 13th, 2000
Brent Jensen donated a kidney to his wife on April 6th, 2000
Rachel Bennett donated a kidney to her sister on April 27th, 2000

Twenty-third anniversary:
Marco Regnier donated a kidney to his cousin on April 11th, 2001
Kimberly Tracy donated a kidney to her nephew on April 12th, 2001
Lisa Clare donated a kidney to her cousin on April 23rd, 2001

Twenty-second anniversary:
Jeff Sears donated a kidney to his mother on March 2nd, 2002
Michelle Desler donated a kidney to her brother on April 2nd, 2002
Duchess Freeman donated a kidney to her husband on April 4th, 2002
Carol Bullard donated part of her liver to her sister on April 8th, 2002

Twenty-first anniversary:
Rebecca Miller donated a kidney to her father, Bob, on March 11th, 2003
Patricia DiClemente donated a kidney to a stranger on March 14th, 2003
Shandy Wheaton donated a kidney to her mom, Shirley Wheaton on March 24th, 2003
Patrick McGuire donated a kidney to his wife on March 26th, 2003
Michael Weil donated a kidney to his nephew on April 1st, 2003
Timothy A. Kimbirk donated a kidney to his son, Timothy B. Kimbirk, on April 16th, 2003
Father Jim Falsey donated a kidney to a stranger on April 21st, 2003
Dolores Barquera donated a kidney to her daughter on April 24th, 2003
Angela Rennick donated a kidney to her uncle on April 25th, 2003
Michele Walker donated a kidney to her son on April 30th, 2003

Twentieth anniversary:
Margaret Earnest donated a kidney to her husband on March 4th, 2004
Kay Rapien donated a kidney to her brother-in-law on March 9th, 2004
Marva Gresham donated a kidney to an unrelated person found on LDO! (since deceased) on March 25th, 2004
Jason Clipston donated a kidney to his brother on March 29th, 2004
Selena Hall donated a kidney to a friend on March 30th, 2004
Hillary Greene donated lung tissue to an unrelated person on April 7th, 2004
Howard Meyerson donated two lung lobes to his sister on April 7th, 2004
Jeani Vance donated a kidney to her sister on April 16th, 2004

Nineteenth anniversary:
Sally Reif donated a kidney to Shar Senor Carlyle on March 2nd, 2005
Michelle Makedon donated a kidney to her father, Paul Makedon, on March 8th, 2005
Erick Gray donated a kidney to his father on March 22nd, 2005
Kelly Stout donated a kidney to a co-worker on March 22nd, 2005
Melissa Breen donated part of her liver to her father on April 5th, 2005

Eighteenth anniversary:
Virginia Postrel donated a kidney to a friend, Sally Satel, on March 4th, 2006
Donna donated a kidney to her husband on March 14th, 2006
Linda Busby donated a kidney to her brother on March 24th, 2006
Anthony Hart donated a kidney to his niece on March 29th, 2006
Carrie Schwaderer donated a kidney to the son of a customer on March 29th, 2006
Diane donated a kidney to a stranger on April 6th, 2006
Fernando Torre donated a kidney to his wife on April 26th, 2006
Lisa K. donated a kidney to her brother on April 27th, 2006

Seventeenth anniversary:
Christy Lindell donated a kidney to her sister on March 5th, 2007
Holly Harrington donated a kidney to her sister on March 5th, 2007
RaChelle Wilkinson (Shell) donated a kidney to her friend, Sandra, on March 20th, 2007
Kelly Anne Astle donated a kidney to her father on March 22nd, 2007
Sunil Joseph donated a kidney to his brother on March 29th, 2007. His brother died seven days later, on Good Friday.
Patty Mack donated a kidney to her brother on April 12th, 2007
Peter G donated a kidney to his father on April 12th, 2007
Alexandria Holmes donated a kidney to a friend's mother on April 18th, 2007
Tom Simon donated a kidney to a stranger on April 19th, 2007
Jenny Bokeno donated a kidney to her brother, Darin, on April 23rd, 2007

Sixteenth anniversary:
Mindy-J Wise donated a kidney on March 3rd, 2008
Barbara Coleman donated a kidney to Alyssa, a 19 year old family friend, on March 6th, 2008
Michael von Wahlde donated a kidney to his mother, Carol, on March 10th, 2008
Denora Carpenter donated a kidney to a friend on March 19th, 2008
Anna Kidd donated a kidney to Jody on March 26th, 2008
David Schneider donated a kidney to his stepfather on March 27th, 2008
Brooke Bowen donated a kidney to her cousin on April 16th, 2008

Fifteenth anniversary:
James Roach III donated a kidney to his wife's cousin, Joe, on March 9th, 2009
Julie Sullivan donated a kidney to her brother, Clint, on March 31st, 2009
Kristen McLoughlin donated a kidney to a stranger, Cynthia Jacobson, now a friend, on April 15th, 2009
Veronica Rivas donated a kidney to her mother, Esperanza Alcauter, on April 23rd, 2009

Fourteenth anniversary:
Lisa Marie Kull donated a kidney to her friend, Heather Tucker, on March 5th, 2010
Erica Rodriguez donated a kidney to her brother, Anthony, on March 18th, 2010
Cindy Wittmier donated a kidney to her best friend, Gloria Thiessen, on March 23rd, 2010
Christine Lerchen donated a kidney to her Dad on March 24th, 2010
Scot Sandhoefner made a non-directed kidney donation on March 26th, 2010
Bonnie Goldberg donated a kidney to an unrelated person on March 30th, 2010
Sabrina St-Hilaire donated a kidney to her uncle, Luc, on April 20th, 2010
Patricia Ahearn donated a kidney through a NEPKE 4 way swap to benefit her husband on April 26th, 2010
Dr. Ekta Singh donated a kidney to Rajkumar, her father-in-law, on April 28th, 2010

Thirteenth anniversary:
Shari Newman donated a kidney to her older sister, Dawn Ahrens, on March 8th, 2011
Janice Dodge donated a kidney to her niece, Jennifer Verhoeven, on March 10th, 2011
Donna Holmes donated a kidney to her husband, Steve, on March 11th, 2011
Steve Windle donated a kidney to his brother, Tom, on March 15th, 2011
Amy Donohue donated a kidney to Anu (Tiny Mom) Dwivedi on April 19th, 2011

Twelfth anniversary:
Michael Eckman donated a kidney to his brother, Mark, on March 9th, 2012
Emilie donated a kidney to a friend on March 26th, 2012
Alyssa Stubblefield donated a kidney to Kristi, an unrelated person, on March 27th, 2012
Suzanne Frye donated a kidney to her mother, Barb, on March 27th, 2012
Jody Phipps donated a kidney to her cousin, Doug Henning, on March 29th, 2012
Johnny donated in a National Kidney Registry chain to benefit his girlfriend on April 3rd, 2012
Ray Mueller made a non-directed kidney donation April 3rd, 2012, through the National Kidney Registry
Terry McClelland donated a kidney to her sister-in-law on April 3rd, 2012
Michael Green donated a kidney to his friend, Trudy Thompson-Larkins, on April 6th, 2012
Jacqui donated a kidney to her brother on April 19th, 2012
Kris Madden donated a kidney to her cousin on April 19th, 2012
Shelly Pattinson donated a kidney to her brother, Curtis Phillips, on April 19th, 2012
Suzie donated a kidney to her friend, Kevin, on April 19th, 2012
Janice Gildow made a non-directed kidney donation on April 20th, 2012
Stephanie donated a kidney to her Dad on April 24th, 2012. Unfortunately, despite her gift working well, he passed away a month later.
Barbara Altizer donated a kidney to her friend, Nicole Hickey, on April 26th, 2012

Eleventh anniversary:
Elizabeth Castillo donated a kidney to her brother, Alex De La Torre, on March 15th, 2013
Chad Snodgrass donated a kidney to his friend, Joe Brown, on March 25th, 2013
Tammy Grindle donated a kidney to her friend, Warren Conary, on March 26th, 2013
Don Kraemer donated a kidney to a Canadian paired exchange on behalf of his wife, Lori, on April 3rd, 2013
Kevin Bernheisel donated a kidney to William Johnson, his sister's father-in-law, on April 4th, 2013
Laura Davis donated a kidney to her co-worker, Jenny DeLorenzo, on April 4th, 2013
Ashlee Edwards donated a kidney to her cousin on April 10th, 2013
Trudi Fenzel donated a kidney to her sister-in-law on April 11, 2013
Ayushi Datta donated a kidney to her mother, Anuradha, on April 15th, 2013
Ruth Crouch Watson donated a kidney to her 17 year old niece on April 15th, 2013
Jennifer Williams donated a kidney to her Dad, Leon, on April 16th, 2013
Anni Hanson donated a kidney to her friend, Eric Frahm, on April 23rd, 2013
Joseph Hoofnagle donated a kidney to his father, Martin, on March 29th, 2013. Martin passed away one and a half years later.

Tenth anniversary:
Luis Carlos Roblejo donated a kidney to his pastor, Fr. Philip Fabiano, on April 7th, 2014
Becky Cox donated a kidney to her brother, BJ Benton, on April 11th, 2014

Ninth anniversary:
Jim Mullins donated part of his liver to his brother, Tim, on March 9th, 2015
Christine Brock donated a kidney in a paired exchange to benefit her best friend's father on March 26th, 2015

Fourth anniversary:
Terri Herrington donated her left kidney to Jeffrey Granger, already a kidney-pancreas recipient of Terri's since deceased husband, on March 3rd, 2020. Jeffrey received 2 more years from Terri.

Living Donation in the News / Audio: The ethics of organ transplants and encouraging more live donors

« Last post by Clark on April 14, 2024, 01:11:07 PM »

https://www.wvxu.org/show/cincinnati-edition/2024-04-10/ethics-organ-transplants-donors

The ethics of organ transplants and encouraging more live donors
Published April 10, 2024 at 4:00 AM EDT
LISTEN • 48:09

Doctors at the Massachusetts General Hospital in Boston say they have transplanted a genetically modified pig kidney into a 62-year-old patient. The hospital said Thursday, March 21, 2024, it’s the first time a pig kidney has been transplanted into a living person.
News of the first-ever patient to receive a kidney from a genetically modified pig spread around the world. The procedure was a success, and Richard Slayman was discharged from the hospital. But the case has raised many questions about whether this is the answer to an organ shortage and whether it’s ethical.
As around 100,000 Americans wait on transplant lists, there’s a race to improve the transplant process. On Cincinnati Edition, we discuss the latest science and examine the ethical questions. We’ll also hear how a local program is raising awareness about living kidney donation and helping families identify donors.
Guests:
Michael Gusmano, Ph.D., professor of health policy, Lehigh University
Lenny Bernstein, former reporter, The Washington Post
Darci Gibson, founder and president, Off The List, Inc.
Tricia Monson, clinical manager for transplants, The Christ Hospital Health Network
Ways to listen to this show:
Tune in live at noon ET M-F. Call 513-419-7100 or email talk@wvxu.org to have your voice heard on today’s topic.
Catch the replay on 91.7 WVXU and 88.5 WMUB at 8 p.m. ET M-F.
Listen on-demand. Audio for this segment will be uploaded to this page by 4 p.m. ET., or subscribe to our podcast.

Living Donation in the News / 25-Year Risk of Fracture Among Living Kidney Donors

« Last post by Clark on April 13, 2024, 07:42:30 PM »

https://www.docwirenews.com/post/25-year-risk-of-fracture-among-living-kidney-donors

25-Year Risk of Fracture Among Living Kidney Donors
By Victoria Socha

Worldwide, the prevalence of living kidney donation is increasing; approximately 30,000 individuals become living donors each year. In the United States, of 459,849 transplants performed, 187,194 individuals have donated a kidney. In 2022, 29.2% of kidney transplants performed in the United States were from living donors.

According to Hilal Maradit Kremers, MD, and colleagues, there are health risks to the donor associated with living kidney donation. While the 15-year observed risk of end-stage kidney disease in kidney donors is low, it is reported to be 3.5 to 5.3 times higher than the projected risk in the absence of donation. Results of previous studies of markers of mineral and bone metabolism among kidney donors following kidney donation have suggested that bone quality may be impaired in kidney donors, due to reductions in kidney mass, lower concentrations of serum 1,25 dihydroxyvitamin D, and secondary increases in serum parathyroid hormone.
Dr. Kremers et al conducted a survey-based study designed to compare the overall and site-specific risk of fracture among living kidney donors. The survey included strictly matched controls from the general population who would have been eligible to donate a kidney but did not do so. Results of the study were reported in JAMA Network Open.
The study exposure was living kidney donation. The primary outcome of interest was a comparison of the rates of overall and site-specific fractures between living kidney donors and controls. Standardized incidence ratios (SIRs) were used in the comparison.
The survey was conducted between December 1, 2021, and July 31, 2023. Living donors (n=5065) at three large transplant centers in Minnesota were invited to participate in a survey regarding their bone health and history of fractures. Using the Rochester Epidemiology Project database, the researchers invited a nondonor control population of 16,156 individuals with no history of comorbidities to complete the same survey.
Survey questions were derived from validated surveys used in the National Health and Nutrition Examination Survey, Framingham Study, Women’s Health Initiative, Study of Osteoporotic Fractures, and the Nurses’ Health Study. The survey included questions on bone health and fracture history, self-reported race and ethnicity, height, weight, smoking, alcohol use, menstrual status, self-reported osteoporosis diagnosis, and use of medications known to interfere with mineral metabolism.
A total of 2132 living kidney donors and 2014 nondonor controls responded to the survey. Of the 2132 donors who responded, mean age was 67.1 years and 58.4% (n=1245) were female. Of the 2014 controls, mean age was 68.6 years and 56.6% (n=1140) were female. There was substantial variation in participation rates between the two groups: 42.1% (2131/5065) of donors responded versus 12.5% (2014/16,156) of controls. There were also variations in participation rates by age (rates were similarly highest among individuals 67 to 72 years of age for both donors and controls). Participation rates were highest among White participants compared with those of a racial or ethnic minority group or unknown race. Rates varied across donation medical centers as well.
Forty-two donors and 137 controls were excluded from analyses due to incomplete survey data. All further analyses comparing the observed and expected number of fractures were limited to the 2090 donors and 1877 controls with complete information on fractures. Among the final analysis cohort, mean time between donation or index date and completion of the survey was 24.2 years for donors and 27.6 years for controls. Controls were 1.5 years older than the donors (68.6 years vs 67.1 years).
Among the 2090 donors, the rate of all types of fractures was significantly lower than among the 1877 controls: 443.0 observed versus 499.8 expected fractures (SIR, 0.89; 95% CI, 0.81-0.97; P=.009). However, there were significantly more vertebral fractures among donors than among controls: 51 observed versus 36 expected vertebral fractures (SIR, 1.42; 95% CI, 1.05-1.83; P=.02). Among men, there were 21.0 observed vertebral fractures versus 12.5 expected (SIR, 1.67; 95% CI, 1.04-2.47; P=.04).
Results of two separate validation studies among the controls demonstrated that controls who returned surveys were similar to controls who did not return surveys in terms of frequency and types of fractures. The fracture survey instrument was validated among a random sample of 332 controls who returned surveys (166 who reported any fracture and 166 who reported no fractures). Overall agreement of fractures reported on the survey versus fractures found by a nurse in the complete historical medical records was good (89.5% raw agreement). The agreement was better than would be expected by chance alone.
The researchers cited some limitations to the study findings, including the historical nature of the study that resulted in an inability to screen nondonor controls for factors such as laboratory test and imaging results that would have precluded kidney donation. Other limitations included the inability to conduct stratified analyses by race and ethnicity due to small numbers of those groups, and the possibility of inaccurate recall among participants of the exact timing of fractures.
In summary, the authors said, “In this survey-based study, we observed a reduction in overall fractures but an excess risk of vertebral fractures among living kidney donors compared with controls after a mean follow-up of 25 years. Treatment of excess vertebral fractures with dietary supplements such as vitamin D3 may reduce the numbers of vertebral fractures and patient morbidity.”
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2814233

Original Investigation Nephrology
January 24, 2024
Fracture Risk Among Living Kidney Donors 25 Years After Donation
Hilal Maradit Kremers, MD1,2; Brandon R. Grossardt, MS3; Adam R. Miller, BS4; et al
Bertram L. Kasiske, MD5; Arthur J. Matas, MD6; Sundeep Khosla, MD7,8; Walter K. Kremers, PhD3; Hatem Amer, MD4,9; Rajiv Kumar, MBBS9,10
Author Affiliations Article Information
JAMA Netw Open. 2024;7(1):e2353005. doi:10.1001/jamanetworkopen.2023.53005

Key Points
Question What is the long-term risk of overall and site-specific fractures among living kidney donors?
Findings In this survey study that included 2132 living kidney donors and 2014 controls, the overall rate of fractures was significantly lower among donors than controls. However, there were significantly more vertebral fractures among donors than controls.
Meaning This study suggests that, although the overall fracture rate among donors was low, reductions in kidney mass and prolonged hyperparathyroidism may predispose living kidney donors to trabecular bone loss and vertebral fractures.
Abstract
Importance Living kidney donors may have an increased risk of fractures due to reductions in kidney mass, lower concentrations of serum 1,25-dihydroxyvitamin D, and secondary increases in serum parathyroid hormone.
Objective To compare the overall and site-specific risk of fractures among living kidney donors with strictly matched controls from the general population who would have been eligible to donate a kidney but did not do so.
Design, Setting, and Participants This survey study was conducted between December 1, 2021, and July 31, 2023. A total of 5065 living kidney donors from 3 large transplant centers in Minnesota were invited to complete a survey about their bone health and history of fractures, and 16 156 population-based nondonor controls without a history of comorbidities that would have precluded kidney donation were identified from the Rochester Epidemiology Project and completed the same survey. A total of 2132 living kidney donors and 2014 nondonor controls responded to the survey. Statistical analyses were performed from May to August 2023.
Exposure Living kidney donation.
Main Outcomes and Measures The rates of overall and site-specific fractures were compared between living kidney donors and controls using standardized incidence ratios (SIRs).
Results At the time of survey, the 2132 living kidney donors had a mean (SD) age of 67.1 (8.9) years and included 1245 women (58.4%), and the 2014 controls had a mean (SD) age of 68.6 (7.9) years and included 1140 women (56.6%). The mean (SD) time between donation or index date and survey date was 24.2 (10.4) years for donors and 27.6 (10.7) years for controls. The overall rate of fractures among living kidney donors was significantly lower than among controls (SIR, 0.89; 95% CI, 0.81-0.97). However, there were significantly more vertebral fractures among living kidney donors than among controls (SIR, 1.42; 95% CI, 1.05-1.83).
Conclusions and Relevance This survey study found a reduced rate of overall fractures but an excess of vertebral fractures among living kidney donors compared with controls after a mean follow-up of 25 years. Treatment of excess vertebral fractures with dietary supplements such as vitamin D3 may reduce the numbers of vertebral fractures and patient morbidity.

Living Donation Forum / Re: Does Low GFR Mean CKD in Living Kidney Donors?

« Last post by Michael on April 07, 2024, 09:10:25 PM »

The Consequences of Chronic Kidney Disease Mislabeling in Living Kidney Donors
https://www.mayoclinicproceedings.org/article/S0025-6196(14)00330-9/fulltext

This 2014 article presents two cases of living kidney donors harmed by being characterized as having chronic kidney disease (CKD), despite being in good health. The authors note that mislabeling donors has having CKD can be traced to problems with the current methodology for determining CKD. One problem is that the system does not recognize that "the reduction in GFR associated with unilateral donor nephrectomy is not a progressive disease process and, unlike CKD, is not associated with an increased risk of end-stage renal disease (ESRD), adverse cardiovascular outcomes, or death when compared with the general population," citing five medical research papers to back up the observations about donor health. A second problem is that "the use of GFR estimation equations in living donors frequently results in underestimation of GFR" because the formulas were created to estimate GFR "in a population of binephric [two kidney] patients with true CKD (emphasis added)."

The authors note: "Improved education about the limitations of CKD estimation equations for both physicians and insurance companies may save healthy kidney donors the stress of being mislabeled with a disease. Changes in the CKD classification system itself would be welcome."

Living Donation in the News / UNOS welcomes new seven-member board of directors

« Last post by Clark on March 13, 2024, 07:31:17 PM »

https://unos.org/media-resources/releases/unos-welcomes-new-board-of-directors/

UNOS welcomes new seven-member board of directors
March 12, 2024, Richmond, VA
On Friday, March 8, 2024, the United Network for Organ Sharing (UNOS) announced the seven members of its new Board of Directors, who begin their terms on March 30, 2024. For the first time in nearly 40 years, UNOS’ Board of Directors will be independent from the Organ Procurement and Transplantation Network’s (OPTN) Board of Directors. The new UNOS Board takes effect the day after UNOS’ current OPTN contract with the federal government ends.
The creation of a new, independent UNOS board eliminates any conflict of interest in the governance of the OPTN. Currently, the same 42 people oversee both UNOS and the OPTN. The board separation represents a significant change in governance structure, and it has received wide-ranging support – from HRSA, from members, and even from critics of the current OPTN system – as it benefits the entire transplant community. Board separation also is in line with HRSA’s own Modernization Initiative.
While HRSA is working to finalize plans for the OPTN board when the current contract expires, UNOS has followed through on its commitment to remove the conflict of interest that has been in place for decades by announcing its new Board of Directors. Now, after working on board separation plans with HRSA for years, UNOS remains confident that HRSA will act by March 30 to finalize this critical change that is best for the entire transplant community.
“Having independent and distinct boards will appropriately allow each organization to benefit from board members who have a singular focus on the mission of the organization they support without conflicts of interest that may cause unnecessary challenges,” said Maureen McBride, Ph.D., CEO of UNOS. “I look forward to working with our new UNOS board, as well as the OPTN board, to not only continue our lifesaving work within the U.S. donation and transplant system, but to also expand our reach as a company to help improve the health and lives of more people around the globe.”
UNOS’ new board members were selected for their diverse range of expertise and experience in business strategy, health care, information technology and information security, and the organ donation and transplant system. The members are:Sue Dunn, former CEO of Donor Alliance[/color]Bapu Jena, M.D., Ph.D., professor of health care policy at Harvard Medical School, internist at Massachusetts General Hospital[/size][/color]Maryl Johnson, M.D., professor at the University of Wisconsin School of Medicine[/size][/color]Irene Kim, M.D., director of the Comprehensive Transplant Center at Cedars-Sinai[/size][/color]Jake Kouns, founder of RVAsec[/size][/color]James Pittman, assistant vice president of transplant and dialysis services for HCA Healthcare[/size][/color]Marie Quintero-Johnson, retired vice president of corporate development for Coca-Cola and kidney recipient[/size]Establishing a UNOS Board that is distinct from the OPTN Board is aligned with HRSA’s Modernization Initiative, calls from Congress to separate the boards, and UNOS’ Action Agenda.
UNOS worked with HRSA as UNOS took action to establish its new governance structure separate from the OPTN:[/color]June 22, 2021 – UNOS met with HRSA to present on the establishment of a separate OPTN board.[/size][/color]January 10, 2023 – UNOS sent a letter to HRSA Administrator Carole Johnson expressing a shared desire to create two distinct boards of directors. The letter noted that UNOS sent the contracting officer a request for a “modification to the current OPTN contract. The proposed modification would assign UNOS a task to develop a plan to separate the OPTN Board of Directors from UNOS’ Board of Directors.” UNOS asked the administrator to approve the contract modification noting that “the end of the current contract, September 29, 2023, would be an ideal time to complete the separation of the boards.”[/size][/color]March 22, 2023 – HRSA announced its OPTN Modernization Initiative, which noted that as part of the effort, HRSA will work to ensure the OPTN Board of Directors “has greater independence.”[/size][/color]May 2023 – HRSA issued a contract modification directing UNOS to submit an OPTN Board Independence Plan that complies with the National Organ Transplant Act and the OPTN Final Rule and included required activities, with timelines and milestones, to incorporate the OPTN as an independent legal entity governed by the OPTN Board of Directors.[/size][/color]July 14, 2023 – UNOS submitted its OPTN Board Independence Plan.[/size][/color]July 20, 2023 – The Senate held a hearing focused on the Securing the U.S. Organ Procurement and Transplantation Network Act, which according to the bill’s sponsor will for the first-time mandate an independent Board of Directors to oversee OPTN separate from the contract holder.[/size][/color]July 27, 2023 – HRSA issued a statement on the OPTN reform law: “The Health Resources and Services Administration shares Congress’ goal of making the Organ Procurement and Transplantation Network (OPTN) work better for the more than 100,000 people on the waiting list for organs. Individuals on the wait list, organ donors, and their families deserve an OPTN governed by an independent, representative board…”[/size][/color]September 28, 2023 – HRSA executed a unilateral extension of UNOS’ contract through March 29, 2024.[/size][/color]October 30, 2023 – UNOS and HRSA met at UNOS’ request regarding board separation effective March 30, 2024, the day after UNOS’ contract ends. HRSA indicated it cannot dictate the corporate governance structure of a private entity.[/size][/color]November 29, 2023 – UNOS and HRSA had a follow-up meeting at UNOS’ request regarding board separation.[/size][/color]December 5, 2023 – UNOS Board voted to establish a new governance structure distinct from the OPTN Board, a decision made in the best interest of patients and the nation’s organ donation and transplant system. The Board made the effective date of this action March 30, 2024, to align with the end of UNOS’ 6-month contract extension.[/size][/color]December 13, 2023 – UNOS and HRSA had a follow-up meeting at UNOS’ request regarding board separation.[/size][/color]December 2023 – HRSA reiterated its commitment to an independent OPTN Board: “For nearly 40 years, the Board of Directors for the Organ Procurement and Transplantation Network (OPTN) has been comprised of the same individuals who serve as the Board of Directors for the private entity that has held the OPTN contract. No formal requirements existed to protect against conflicts of interest resulting from this shared role.”[/size][/color]February 22, 2024 – UNOS membership ratified the UNOS Board decision to establish a new UNOS governance structure.[/size][/color]March 29, 2024 – UNOS’ current contract with HRSA ends.[/size]Although the federal government’s timeline for implementing its OPTN Modernization Initiative has shifted, UNOS, under new leadership, has remained committed to being a good partner to the administration, Congress and stakeholders to change the current governance structure that requires UNOS Board members to serve as OPTN Board members. Effective March 30, 2024, OPTN Board members will not have a fiduciary duty to UNOS as a non-profit organization.

About UNOS
United Network for Organ Sharing (UNOS) is the mission-driven non-profit serving as the nation’s transplant system under contract with the federal government. We lead the network of transplant hospitals, organ procurement organizations, and thousands of volunteers who are dedicated to honoring the gifts of life entrusted to us and to making lifesaving transplants possible for patients in need. Working together, we leverage data and advances in science and technology to continuously strengthen the system, increase the number of organs recovered and the number of transplants performed, and ensure patients across the nation have equitable access to transplant.

Living Donation Forum / Re: Add Your Story to an Article I am Writing

« Last post by Clark on March 03, 2024, 03:20:22 PM »

Hi, Pauline!

We discourage folks from posting their personal contact info as our forums are public. If you don't take it down and request a direct message, we will. As you're a member of the press and writing to a deadline, we'll hold off for a while.

You don't list living donors as folks you want to talk to, odd as that's primarily who's here, and odd as we know more about the experience than either recipients or transplant surgeons. Also, is your interest specific to the Canadian Maritimes, or broader? Best wishes.

Living Donation in the News / Incorrect information before living kidney donation

« Last post by Clark on March 03, 2024, 03:13:39 PM »

https://www.breakinglatest.news/health/incorrect-information-before-living-kidney-donation-health-adhoc/

Incorrect information before living kidney donation
Berlin – In 2018, a healthy, young and sporty woman donated a kidney to her sister who had kidney disease. However, the procedure at the Berlin Charité did not go as planned. During the minimally invasive kidney removal, she suffered significant injuries that put her life in acute danger due to internal bleeding. Only an emergency operation and a blood transfusion saved the young donor’s life.
The donor, a former competitive athlete (professional boxer), still suffers from the physical consequences of kidney loss in addition to the traumatic experience. As a result of the donation, the woman is recognized as having reduced earning capacity and only works part-time. She had to give up her sport.
Since the doctors at the Berlin Charité were of the opinion that the severely damaged young living kidney donor was treating her incorrectly and had also not adequately explained the risks, she sued the doctors and the clinic for compensation and damages at the Berlin Regional Court (LG) (AZ 17 O 254/21).
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Living Donation Forum / Add Your Story to an Article I am Writing

« Last post by PaulineMilner on February 27, 2024, 04:54:32 PM »

I am a contracted writer for the Saltwire Network covering Atlantic Canada.

My current article assignment is to interview both organ recipients and doctors who perform transplants.

Are you an organ donor recipient?

Would you agree to tell your story for the article?

If you are agreeable, I can send you a short list of questions via email.

You may feel free to use just your first name and last initial or a complete psudenom. Your reason for doing so will not be questioned. If you want to be fully credited for the article that is okay too.

This article is due to be published during organ donor week from April 1st to April 8th.

Your story would definitely help readers better understand the organ donor process and assist others who are waiting for donor organs.

Thank you for your consideration and I hope you will be a part of this very special article.

I am available at your convenience.

Best regards,

Pauline Milner
milnerwriting@gmail.com
Phone 506 639 3738

Living Donation in the News / Questionable Content uses the kidney trope

« Last post by Clark on February 13, 2024, 05:42:49 PM »

http://questionablecontent.net/view.php?comic=5242

Living Donation Forum / February 2024 Living Organ Donor Anniversaries! Add yours to our calendar!

« Last post by Clark on February 13, 2024, 05:30:16 PM »

Happy Valentine’s Day! We all have that urge to give love and be loved. May you find love in this life, and love in return!

Happy National Donor Day! National Donor Day was started in 1998 by the Saturn Corporation and its United Auto Workers partners with the support of the U.S. Department of Health and Human Services and many nonprofit health organizations.

Thirty-second anniversary:
Robin Neill Payne donated a kidney to her father, Keith, on February 5th, 1992

Thirty-first anniversary:
Christopher B. Walker donated a kidney to his son, Brandon, on February 5th, 1993

Twenty-ninth anniversary:
Mae Menard donated a kidney to her daughter on February 15th, 1995

Twenty-fifth anniversary:
Pete Whitfield donated a kidney to his brother on February 2nd, 1999
Janet Troiano donated a kidney to her sister on February 17th, 1999

Twenty-third anniversary:
Jeffrey Looman donated a kidney to his step-father on February 18th, 2001

Twenty-second anniversary:
Chris Mason donated a kidney to his father on February 5th, 2002
Lea King donated a kidney to her mother on February 6th, 2002
Linda Bartalot donated a kidney to her mother on February 15th, 2002
Father Patrick Sullivan donated a kidney to a stranger on February 20th, 2002
Lana Schupbach donated a kidney to her mother on February 20th, 2002

Twenty-first anniversary:
Teddie Anderson was a non-directed kidney donor to Janet Grier on February 10th, 2003
Raoul Gomez, Jr., donated part of his liver to his father on February 27th, 2003

Twentieth anniversary:
Rita Kocian, a living kidney donor to her mother in August 2000, died on February 12th, 2004
Joyce Trivett donated a kidney to a friend on February 13th, 2004
Darcie Bjorgo donated a kidney to her mother, Judy Bjorgo, on February 23rd, 2004
Chris Dickenson donated a kidney to her sister on February 24th, 2004
James Muscat donated a kidney to his brother-in-law, David Vella, on February 25th, 2004

Nineteenth anniversary:
Jaime L. Smith donated a kidney to her aunt on February 10th, 2005
Iris M. Saltiel donated a kidney to her sister on February 15th, 2005
Steve Natalie donated a kidney to a friend on February 22nd, 2005
Jeffrey Padilla donated a kidney to his brother-in-law on February 25th, 2005

Eighteenth anniversary:
Patrick Goldon donated a kidney to his sister on February 2nd, 2006
Linda Shaffer donated a kidney to her father on February 15th, 2006
Shannon Irwin donated a kidney to her father on February 20th, 2006
Corry Rausch donated a kidney to her daughter on February 28th, 2006

Seventeenth anniversary:
Audra Burgess donated a kidney to her sister-in-law on February 15th, 2007

Sixteenth anniversary:
Sue Kosiorek donated part of her liver to her brother on February 5th, 2008
Terry Brown donated a kidney to a friend's husband on February 8th, 2008
Sara Anderson donated a kidney to her Dad on February 14th, 2008
Maureen Corcoran donated a kidney to her cousin, Mary Jane DiPaolo, on February 19th, 2008
Karl Smith donated a kidney to his sister, Danica, on February 29, 2008

Fifteenth anniversary:
Nicole Skelly donated a kidney to her friend, Julie, on February 4th, 2009
Carol Stangel donated a kidney to her daughter, Katie, on February 10th, 2009
Wendy Switzer donated a kidney to her hubby on February 18th, 2009

Fourteenth anniversary:
Stacy Rushton donated a kidney to her husband on February 3rd, 2010
Timothy Joyce donated a kidney to his sister, Mary Bridget Collins, on February, 8th, 2010
Ebony Vallance donated a kidney to her Dad on February 9th, 2010
Sandy Benning donated a kidney on February 10th, 2010
Neal Orsbon donated a kidney to his younger sister on February 12th, 2010
Patricia Childers donated a kidney to her brother-in-law, David Elrod, on February 12th, 2010
Ronda Peterson donated a kidney on February 15th, 2010
Todd Welden donated a kidney to Robbie Moore on February 17th, 2010
Cindy donated a kidney to her brother on February 22nd, 2010

Thirteenth anniversary:
Roger Ernest donated a kidney to his daughter's partner, Gary Bourton, on February 8th, 2011

Twelfth anniversary:
Luis G. Rivera donated a kidney to his brother, Ruben A. Rivera, on February 17th, 2012
Faith Bryant donated a kidney to Blaze Pagliarini, a stranger, on February 19th, 2012
Julian Cook donated a kidney to a total stranger, Mary Tompkins, on February 20th, 2012
Morgan Bush donated a kidney to her brother, Scott Briggs, on February 21st, 2012
Lauri Passeri donated a kidney to her friend, Kevin Beam, on February 24th, 2012
Bob Minteer donated a kidney to his friend, Jim, on February 28th, 2012
Jennifer MacIntyre made an unrelated kidney donation on February 28th, 2012
Heather donated a kidney to her older sister on February 29th, 2012

Eleventh anniversary:
Itty Beck donated a kidney to an unknown person on February 12th, 2013
Pauline donated a kidney to her spouse, Ken, on February 13th, 2013
Virginia Compton donated a kidney to her sister-in-law, Pam, on February 18th, 2013
Cori McManemon donated a kidney to Judy Mogel on February 19th, 2013
Mary Beth Wilkinson donated her left kidney to Donald Mark Lindsay, a complete stranger three states away, on February 20th, 2013 in memory of her twin brother who passed away from cancer
Lorie Swanky donated a kidney to her sister, Tammy Swanky, on February 25th, 2013

Tenth anniversary:
Danny Walker donated a kidney to his brother, Jimmy, on February 4th, 2014
Heather Hunt donated a kidney to her sister, Kristin Hunt Wolff, on February 26th, 2014

Ninth anniversary:
Phillip Gay donated a kidney to his daughter, Charlotte Archer Gay, on February 17th, 2015

Eighth anniversary:
Kristin Bramblett donate a kidney to her friend, Keith Kozel, on February 19th, 2016
Micki Stanley donated a kidney to his sister, Patricia Kopp, on February 19th, 2016
Pamela Woodward donated a kidney to her spouse, John, on February 25th, 2016

Seventh anniversary:
Marilyn Hulslander donated a kidney to her husband, Ralph, on February 7th, 2017

Fourth anniversary:
Ruth Esteban-Muir was a non-directed bridge donor on February 19th 2020