Dear Mac,

  So sorry to hear this! What a set of challenges for you all! I hope all five of you are able to talk candidly and supportively with each other about all your hopes. I hope you have someone outside your family with whom to air these worries, too. I'm sure your support of all of them, and your ongoing willingness to be a donor, even if to a stranger as part of a chain, overwhelms each and every one of them, too. Tragic life threatening situations are what we hope to ameliorate, as much as we can. Best wishes to you all!

Hi all. Quarterly run in the pooled donation system did not find a match for myself and my husband,  so onto the next run in a few months time.

Unfortunately in the last few months two of my adult sons have now also been diagnosed with PKD, and our third nearly adult son who's been having some symptoms is going to have initial ultrasound testing.

This has really thrown me. Of course my husbands illness and surgery prospects have been stressful, but knowing my children may go through similar is incredibly worrying. I have also been left with a huge emotional dilemma. My husband is obviously most in clinical need of a transplant which would hopefully last him a good while. My children may or may not develop severe kidney failure.  Our youngest is experiencing symptoms at quite a young age in comparison to his father and siblings.

Of course l still want to help my husband. But I'm absolutely torn knowing that if I do I obviously don't have the chance to help any of my children in the future should they need it. ( Although that brings yet again another cycle of concerns, how could l choose between them if a match, directly or through a paired programme?) As a parent l think instinctively you want to protect and help your children above anyone else.

I love my husband dearly and want him to have as good and as long a life as he can, but of course l want the same for my children, adult or not. It has turned what is a stressful situation into quite an emotionally overwhelming one and l just can't seem to find a way of how to realistically move forward. If feels as if whatever l do will be to someone's detriment.

https://abc13.com/post/memorial-hermann-transplant-former-surgeon-acknowledges-changing-patient-criteria-documents-state/19087941/

Former surgeon accused of altering patient records says he did it to 'help his patients,' docs state

A former surgeon, accused of manipulating a transplant list, said he did it to help his patients. This is all according to a new motion filed in the case.
ABC13 first reported on the allegations against Dr. John Bynon in 2024. This happened when Memorial Hermann suspended its liver transplant program over the allegations that Dr. Bynon altered several patients' medical records, making it impossible for them to get donor livers.
In February 2026, Bynon was indicted by a federal grand jury and accused of falsifying medical records.
Now, in a motion to dismiss the case, Bynon acknowledges he changed the acceptance criteria for five patients because he claims they were not healthy enough to undergo a transplant. The document adds that Bynon kept them on the "active" waitlist until their health improved.
According to the motion, the changes were "consistent" with COVID-19 guidance given by the "United Network for Organ Sharing" (UNOS), which maintains the organ database.
Dr. Bynon also faces three civil cases related to the scandal.

https://capitalanalyticsassociates.com/spotlight-on-giselle-guerra-executive-director-miami-transplant-institute/

Spotlight On: Giselle Guerra, Executive Director, Miami Transplant Institute

Key points:

• • Miami Transplant Institute is advancing transplant care through robotics, AI, and complex multi-organ procedures.
• • Leaders are pushing to expand living donation by breaking myths around donor safety and recovery.
• • MTI combines innovation with personalized, culturally aware care to improve patient outcomes.

As medical director of the living kidney donor program at the Miami Transplant Institute (MTI), a joint enterprise between UHealth—University of Miami Health System and Jackson Health System, Giselle Guerra leads a specialized program at one of the nation's most ambitious transplant centers, one that routinely takes on complex, multi-organ cases that other places decline. Guerra spoke with Invest: about MTI's focus on living donation, robotic surgery, artificial intelligence, and xenotransplantation. "There are significant myths and misconceptions about what it means to be a living donor. The reality is that you can live a full, healthy, productive life after donating," Guerra said.

...

https://www.healthcare-brew.com/stories/2026/05/05/launched-nonprofit-democratize-transplant-information

This couple launched a nonprofit to democratize transplant information
At 31, Tristan Mace needed a heart transplant, and the experience showed him how much the industry needed better information around care.

ByCassie McGrath
MAY 5, 2026

Five years ago, when he was 31 years old, Tristan Mace was in a coma in the hospital. The venture capitalist and tech entrepreneur had initially thought he had pneumonia but soon learned his heart was failing.
That left Jordan Mace, his wife who was three months pregnant with their first child at the time, to make a big decision: Should Tristan get a heart transplant?
She told us she was handed a binder with an overwhelming amount of information and given 24 hours to decide. It had answers to everything from whether a transplant recipient can get a tattoo or have a cat to if they can have children, she recalled.
The procedure was successful, but it left the couple with a new mission to make the transplant process easier for other patients and caregivers.
That's why on May 5 they launched the nonprofit transplants.org, a site that digitizes all those different binders to provide a one-stop shop for reliable, up-to-date transplant information.
...

https://www.healio.com/news/nephrology/20260505/qa-whats-new-in-living-kidney-donation-evaluation-and-counseling

Q&A: What's new in living kidney donation, evaluation and counseling


Key takeaways:

• Innovations in living donation counseling include genetic testing, a race-neutral eGFR equation and hypertension guidelines.
• Clinicians can ask patients with advanced CKD what they know about living donation.

Living kidney donation has received increased attention in clinical practice and in the media since the Kidney Disease: Improving Global Outcomes published clinical practice guidelines on living donation in 2017.
In a review published in the Journal of the American Society of Nephrology, Krista Lentine, MD, PhD, medical director of living donation at the SSM Health Saint Louis University Hospital Transplant Center, and colleagues highlighted insights that have emerged since the KDIGO guideline publication. Among these, genetic testing, use of a race-neutral eGFR equation and hypertension guidelines have led to changes that may be considered in future guideline updates, they wrote.


Outside of the review, recent news stories, such as actor Jesse Eisenberg's kidney donation, have also brought public awareness to the act of living kidney donation. Eisenberg made a nondirected kidney donation in late 2025.
In addition, policy-driven movements to expand access and support for living donation are being proposed at the federal level.
Healio spoke with Lentine about how clinicians can inform patients about the benefits and risks for living donation and the power of storytelling in building awareness.

...

https://www.niskanencenter.org/investigating-the-investigators-congressional-oversight-and-state-capacity/

Investigating the investigators: Congressional oversight and state capacity
Justin Cohen


...
What should the future of congressional oversight look like? One good model is the bipartisan coalition of Senators Chuck Grassley (R-IA), Ron Wyden (D-OR), Todd Young (R-IN), and Ben Cardin (D-MD), who in 2020 investigated the government's Organ Procurement and Transplantation Network (OPTN) program, which a single federal contractor, United Network for Organ Sharing (UNOS), had managed for 40 years. From numerous hearings and reports, the group of senators determined that UNOS's management had led to significant failures, including the discarding of organs that were viable for transplants.
The group's final report noted that experts estimated its recommendations to improve OPTN — chiefly, opening OPTN to more contractor competition — would allow 28,000 more transplants each year and save up to $40 billion over the next decade. The senators championed the Securing the U.S. Organ Procurement and Transplantation Network Act (H.R.2544), which incorporated many of their recommendations when President Joseph R. Biden signed it into law in 2023.
...

https://www.nature.com/nature-index/topics/l4/living-donor-liver-transplantation-techniques

Living Donor Liver Transplantation Techniques


Summary
Living donor liver transplantation (LDLT) has evolved into a life-saving procedure that relies on the careful selection of donor grafts, precise surgical planning and enhanced perioperative management. Donor safety remains paramount, guiding the choice between left lateral, left lobe and right lobe grafts according to recipient body size and underlying pathology. Preoperative imaging, notably computed tomography (CT) volumetry, establishes graft size and vascular anatomy, ensuring an optimal graft-to-recipient weight ratio and reducing the risk of small-for-size graft syndrome. Surgical refinements such as minimally invasive donor hepatectomy and refined parenchymal transection techniques have reduced postoperative morbidity. In the recipient, portal flow modulation strategies—including splenectomy, splenic artery ligation and portocaval shunting—are employed to prevent excessive portal hyperperfusion and shear injury to a marginal graft. Advances in machine learning and deep-learning algorithms now support donor–recipient matching and accurate graft weight estimation, further personalising care and improving long-term graft survival. Attention to graft regeneration kinetics, monitored through serial volumetry and liver function markers, underpins protocols for immunosuppression and rehabilitation. Collectively, these technical advances underscore a global trend towards precision LDLT, balancing donor risk and recipient benefit with ever greater fidelity.
...

https://spectrumlocalnews.com/nys/rochester/health/2026/04/27/national-kidney-foundation-holds-event-to-educate-people-on-becoming-a-living-organ-donor

National Kidney Foundation holds event to educate people on becoming a living organ donor
The National Kidney Foundation held an event Sunday in Irondequoit to inform people about how they can become a living organ donor.
Doctors say there are a lot of people who are unaware of the process of donating an organ. But one local doctor and a living organ donor both compare the process to donating blood. 
"So I think they just don't understand what the process is," said Dr. Jeremy Taylor, transplant director of nephrology at the University of Rochester. "You know, people know about donating blood, but they don't know about donating organs and I think it's something a lot of people can do."
Living kidney donation has traditionally had excellent outcomes for both the donor and the recipient.
According to a study published in JAMA, fewer than 1 in 10,000 donors die within three months of surgery. More than 98% of kidneys from living donors are still functioning one year after the procedure, according to Stanford Health Care. Living donor kidneys generally provide better long-term survival for recipients compared to deceased donor kidneys.

https://www.avera.org/news-media/news/2026/living-donor-employees/

Avera Supports Living Donor Employees

Avera Health is proud to announce they have joined the Living Donor Circle of Excellence. This program, an initiative of the American Society of Transplantation (AST) celebrates employers that provide salary support to their employees who choose to be a living organ donor.
"In keeping with Avera's mission and beliefs, we uphold human dignity, protect life and promote the common good, that includes the willingness to be a living donor," said Kim Jensen, Chief Human Resources Officer at Avera. "Avera's benefits include expanded leave pay to support our employees who choose to donate."
"As a health care system that offers solid organ transplant, we know the incredible difference transplant makes in the lives of our patients," said Glen Geditz, Director of the Avera Transplant Institute.
John Gill, MD, Founder of the Living Donor Circle of Excellence said, "Living donors are heros amongst us, their gift is lifesaving for patients in need of a kidney or liver transplant and has a huge positive impact on society. Patients facing life-threatening diseases are able to live normal lives, raise their families, and participate in their communities. By supporting living organ donors, we are also building stronger communities."
Today, more than 100,000 patients are waiting for a lifesaving kidney or liver transplant. Of the transplants performed in 2021, living donors accounted for 24% of kidney transplants and 6% of liver transplants. Financial disincentives are a barrier for many potential living organ donors. Living organ donation typically includes a four- to six-week recovery period and many will use their vacation time or take unpaid absences during this period to donate.
The Circle encourages other employers to help people in need of lifesaving organ transplants. You can learn more about AST's Living Donor Circle of Excellence here.