I don't have any insights into the organ transplant process that would be helpful to your project, but I posted a link to your message on the LDO Facebook page and the LinkedIn group. Hope that helps!

Thank you for the thoughtful questions. I appreciate the opportunity to clarify my perspective and intent.

I am not a transplant recipient, donor, or immediate family member of one. My connection to the community comes through professional and operational exposure rather than personal clinical experience. Over time, I have worked closely with healthcare systems and regulated clinical workflows, which has brought me into contact with transplant operations, coordination challenges, and the complexity of waitlist management. While I do not speak from lived transplant experience, I approach this work with respect for the community and an awareness that the stakes are exceptionally high.

The motivation came from observing how much of transplant coordination relies on complex, manual, and often opaque operational processes that sit alongside national systems. While allocation policy and national infrastructure appropriately remain centralized, there is a significant amount of day to day operational work that is handled locally and often with fragmented tools.

I was interested in exploring whether a transparent, auditable, and openly inspectable software model could help make those workflows easier to understand, reason about, and discuss. TransTrack began as a technical and conceptual exercise rather than a product initiative. The goal was to model waitlist state changes, readiness tracking, and audit trails in a way that makes assumptions explicit and workflows visible, not to automate decisions or replace existing systems.

The current shift toward a multi contractor model introduces both uncertainty and opportunity. In that context, I do not view adoption of TransTrack as a replacement for existing systems or as something that should be broadly deployed without careful evaluation. Instead, I see its role, if any, as incremental and collaborative. Potential paths forward would include use as a reference implementation, a training or modeling tool, or a platform for shared discussion about operational workflows rather than as a system of record. Any real world adoption would need to be guided by transplant centers and OPOs themselves, aligned with regulatory oversight, and responsive to the evolving governance structure under HRSA.

I believe the way forward involves transparency, interoperability, and open dialogue. Open source efforts can contribute by allowing the community to examine ideas, question assumptions, and explore alternatives without forcing premature decisions. Whether TransTrack itself is adopted is less important to me than whether it helps stimulate constructive conversation about how operational tools can better support donation and transplantation during a period of change.

Wow! This is amazing. I've got lots of questions, but let me start with just a few:

• Are you connected to the donation community in some way -- as a recipient, a donor, relative...?
• It obviously took a lot of time to write the program and supporting documentation, and it appears you have knowledge of the transplantation process. What motivated you to write this program?
• The U.S. transplantation system is in some turmoil right now as HRSA moves to a multi-contractor model. UNOS retained its contract but not all of the services it previously provided. In this context, what do you see as the way forward to get your program adopted?

Hi everyone,

I wanted to share a project I've been working on that's focused on improving how transplant waitlists are managed and understood, with the ultimate goal of supporting better coordination and transparency around transplantation.

The project is called TransTrack. It's an open-source transplant waitlist management program designed to model how transplant centers track candidates, status changes, and readiness over time, aligned with UNOS/OPTN-style workflows. It's not a replacement for UNet, and it does not make allocation decisions. Instead, it's meant as a tool for:

Understanding waitlist status changes

Improving internal coordination and record-keeping

Supporting transplant program workflows and audits

Exploring ways technology can reduce administrative friction that indirectly affects patients and donors

I'm sharing it here because living donors and recipients often experience the consequences of system complexity firsthand, and I believe your perspectives are incredibly important. While this is a technical project, it's being built with the real-world transplant experience in mind.

🔹 The code is public on GitHub
🔹 It's early-stage and evolving
🔹 Feedback, ideas, and critiques are genuinely welcome

If you're curious, here's the repository:
👉 https://github.com/NeuroKoder3/TransTrackMedical-TransTrack.git

If you'd rather not look at code but want to share thoughts about:

pain points in waitlist communication

delays or confusion around status changes

areas where better tools could help patients, donors, or coordinators

I'd really value that input as well.

Thank you for taking the time to read, and thank you — sincerely — to everyone here who donates, advocates, or supports others through transplant journeys.

https://natlawreview.com/press-releases/ultimate-act-service-three-female-veterans-become-living-organ-donors

The Ultimate Act of Service: Three Female Veterans Become Living Organ Donors

Pin-Ups For Vets, the nationally recognized nonprofit dedicated to supporting hospitalized Veterans and deployed troops, proudly announces that three of its female U.S. Veteran volunteer Ambassadors have taken their service to an extraordinary new level: each has become a living organ donor, giving the gift of life to others in need.
These remarkable women—who already volunteer their time to uplift their fellow Veterans through Veterans Hospital visits across the Country, have now made a deeply personal and life-changing commitment by donating organs while living. Their selfless actions have directly saved and transformed the lives of four individuals and their families.
"Pin-Ups For Vets has always been about service, compassion, and showing up for others," said Gina Elise, Founder of Pin-Ups For Vets. "But what our three Ambassadors have done goes far beyond anything we could ever ask. They didn't just raise awareness. They didn't just volunteer. They literally gave a part of themselves to save another human life. That is heroism in its purest form."
The three women are all military Veterans who have served their country in uniform and continue to serve their communities through Pin-Ups For Vets' mission. Their decision to become living donors reflects the same courage, selflessness, and commitment to others that defines their military service and their ongoing volunteer work with the nonprofit. Stephanie Larson, (4-year Marine Corps Veteran) donated her kidney in 2018. Lindsay Gutierrez (6-year Air Force Veteran) donated her kidney in 2022 and 40% of her liver in 2024. Jennifer Brofer (10-year Marine Corps Veteran) donated her kidney in 2025.
Double organ donor and Air Force Veteran, Lindsay Gutierrez explains, "Becoming a living organ donor is one of the most personal and profound decisions I've ever made—and I've had the rare honor of doing it twice. Both donations were acts of pure altruism—done not for recognition, but out of a deep sense of service and compassion. I'm now one of only about 280 people in the United States—just 0.000084% of the population—who have become dual living organ donors. It's a statistic that reflects not just rarity, but the incredible potential each of us has to give life. I've experienced firsthand how resilient the body is. After both surgeries, I healed fully and live a healthy, active life with no limitations."
Living organ donation is a rare act of generosity, requiring both physical sacrifice and emotional strength. By stepping forward, the Pin-Ups For Vets Ambassadors are also helping raise awareness about the critical need for organ donors in the United States, where thousands remain on waiting lists for life-saving transplants.
Marine Corps Veteran, Jennifer Brofer says, "I had considered becoming a living organ donor for years, but I was truly inspired after hearing (fellow Pin-Ups For Vets Ambassador) Lindsay Gutierrez's story. After learning about Donor Outreach for Veterans (DOVE), a non-profit organization that matches living donors with Veterans in need of a kidney, I felt called to give back to someone who has already sacrificed so much for our Country. It was truly an honor to be able to donate and help give a Veteran a second chance at life. I would do it all over again if I could."
Marine Corps Veteran, Stephanie Larson added, "Being a living donor is such an incredible honor that I am truly proud of. It had been something I had thought about for years before starting the process. Being in a position to help possibly change someone's life and give them more time with the people they love was something I just couldn't imagine not doing."
Pin-Ups For Vets honors these three Ambassadors not only for their continued dedication to the Veteran community, but for their extraordinary compassion and bravery in choosing to become living donors. Their stories stand as powerful examples of hope, humanity, and the enduring spirit of service.
For more information about Pin-Ups For Vets or to support its mission, visit www.pinupsforvets.com
About Pin-Ups For Vets
Founded in 2006 by Gina Elise, Pin-Ups For Vets is a nonprofit organization dedicated to supporting VA Hospital therapy programs, hospitalized Veterans, homeless Veterans, deployed Troops, and military families through fundraising, volunteerism, and community engagement. The organization has earned national recognition for its creative approach to honoring service and boosting morale among America's Heroes.

Best wishes, Mac! Michael said it well, what you're feeling now is quite normal and reasonable. Preparation for the possibilities might be calming, or not. I had a long interval between initial ABO compatibility blood draw and the full series of tests, than another long interval before surgery actually took place. That was 25 years ago that I started on the path to donation, and 23 years ago that I actually donated. My recipient, then an acquaintance, now a good friend, and I are both doing very well. I've had normal urinary and abdominal issues come up in my fifties and sixties since, and if anything my status as a living donor has meant more conservative, attentive care by medical professionals. There are very low probability negative outcomes, so do the appropriate planning for them. If you drive a car, your risks are about as great every time you get behind the wheel, so try and keep perspective. If anything, we should be a lot more careful driving, and be sure our will and end of life directives are in order before we do that. Would discussing specifics help, one on one? Check our our Donor Buddy list and see if that helps. Private messaging is possible, too. We're happy to help! Bravo for being on the path!

https://medicalxpress.com/news/2026-01-mistrust-linked-deceased-donor-donations.html

Public mistrust linked to drop in deceased donor organ donations and kidney transplants
by Lauran Neergaard
Organ donations from the recently deceased dropped last year for the first time in over a decade, resulting in fewer kidney transplants, according to an analysis issued Wednesday that pointed to signs of public mistrust in the lifesaving system.

More than 100,000 people in the U.S. are on the list for an organ transplant. The vast majority of them need a kidney, and thousands die waiting every year.
The nonprofit Kidney Transplant Collaborative analyzed federal data and found 116 fewer kidney transplants were performed last year than in 2024. That small difference is a red flag because the analysis traced the decline to some rare but scary reports of patients prepared for organ retrieval despite showing signs of life.
Those planned retrievals were stopped and the U.S. is developing additional safeguards for the transplant system, which saves tens of thousands of lives each year. But it shook public confidence, prompting some people to remove their names from donor lists.
Dr. Andrew Howard, who leads the Kidney Transplant Collaborative, said last year's dip in kidney transplants would have been larger except for a small increase—about 100—in transplants from living donors, when a healthy person donates one of their kidneys to someone in need. The collaborative advocates for increased living donations, which make up a fraction of the roughly 28,000 yearly kidney transplants.
With the exception of 2020, when the COVID-19 pandemic was raging, organ transplants have been rising year-to-year. Last year's decline in deceased donors didn't translate into fewer transplants overall: There were just over 49,000 compared with 48,150 in 2024. Transplants of hearts, livers and lungs continued to see gains, according to federal data. Howard said that was likely due to differences in how various organs are evaluated and allocated for transplant.
The Association of Organ Procurement Organizations wasn't involved in Wednesday's analysis but expressed alarm, calling on its members, hospitals and federal regulators "to unite in restoring public trust and strengthening this critical system."

https://rollingout.com/2026/01/18/america-just-hit-a-kidney-transplant/

America Just Hit a Kidney Transplant Turning Point

A troubling decline in deceased donations is slowing life-saving procedures, and nobody's really sure how to fix it
The number of kidney transplants in the United States fell in 2025 marking the first meaningful decline in decades and the reasons behind it reveal a broken trust system. The Kidney Transplant Collaborative analyzed national data and documented 28,377 kidney transplants in 2025, down 116 from the previous year. That number might sound small until you realize what it represents: 116 fewer people received organs that could extend or save their lives. The drop stemmed from a steeper decline in deceased donor kidneys, which account for about three-quarters of all donations. Living donor kidneys increased, but not enough to offset the loss. More troubling than the numbers themselves is what's driving the decline and how quickly public trust in organ donation collapsed in 2025.
"For the first time in decades, we are seeing a measurable decline in deceased kidney donations even as living donations continue to rise," Dr. Andy Howard, chair of the collaborative, said in a statement. "This is a serious signal for the transplant community and patients will feel the consequences quickly."


The trust breakdown happened fast
Transplant levels stayed stable through the beginning of 2025, then started declining noticeably in June. That timing isn't coincidental. Over the summer, federal officials announced that organ donations could be authorized for patients still showing signs of life. The revelation prompted immediate regulatory tightening including decertifying organizations that procure organs. Media reports about individual cases made things worse. One story involved a woman declared dead for organ procurement who was cut open when doctors discovered her heart was still beating. She survived.
That's exactly the kind of story that destroys public confidence instantly.


The heightened scrutiny "has likely unsettled participants in the deceased donor process," the Kidney Transplant Collaborative noted. Rather than reinforcing confidence in the system, the environment "may be contributing to hesitation among donors, families, and institutions at a moment when continued growth in deceased donation is critical." The collaborative documented something concrete: thousands of people removed themselves from organ donation lists in August 2025 alone.
This affects real people waiting right now
Over 100,000 people are currently on organ waiting lists. About 94,000 of those are waiting specifically for kidneys. Some people die waiting. Those aren't abstract statistics they're patients running out of time while the transplant system experiences its first meaningful decline in years.
The organ procurement organizations the institutions responsible for coordinating donations appear to have become more conservative as scrutiny intensified. That caution, while potentially understandable, directly reduces the number of organs available for transplantation.
The bigger system problem nobody's addressing
The national transplant system functions as a partnership between organ procurement organizations, the federal government, the United Network for Organ Sharing, and hospitals. It's complex, decentralized, and heavily dependent on public participation. When public trust erodes, the entire system suffers.
The Association of Organ Procurement Organizations acknowledged the problem directly, calling the 2025 transplant decline "alarming" and attributing it to collapsing public trust stemming from "widespread misinformation and confusion about how organ donation works and the role of each stakeholder in the process."
They're essentially admitting that confusion about the system itself is driving people away from participation.
The stakes are existential
What's actually happening is that legitimate concerns about organ procurement concerns that absolutely deserve investigation and regulation are getting tangled with misinformation, creating a situation where public trust collapses faster than solutions emerge. You need public participation for organ donation to work. When people lose confidence, they opt out. When they opt out, people die waiting for transplants. That's the direct consequence.
The collaborative and procurement organizations are calling for unity: "We call on all stakeholders in organ donation and transplantation from OPOs to our hospital partners and federal regulators to unite in restoring public trust and strengthening this critical system that has served millions of Americans and their families."
That sounds reasonable until you realize the system needs both trust and transparency, accountability and participation. It needs federal oversight that catches actual problems without creating panic. It needs public education about how donation actually works. And it needs to happen fast because every month that transplant numbers stay low, more people die waiting.

Mac, it sounds like you're having a perfectly normal reaction to the prospect of having surgery. Checking this site, Facebook groups, etc., you'll see that what you're experiencing is what happens as you approach the big day. If it didn't, we would worry about you!

The LDO website includes a full discussion of what is known today about the "long-term" health (and other) consequences of donation.  There's a long list of possibilities. But the good news is the likelihood of anything negative happening is small, and the vast majority (96%) of donors say they would do it again.

So maybe you can channel your nervous energy into getting prepared. Make sure you have your support system in place. Reach out to others (as you've done here) and talk things through. Find a guided meditation to listen to. Look into what others suggest you bring with you to the hospital, including a "care" package for yourself, and start packing. Maybe buy gifts for the recipient and the transplant team. Think about something you can do to reward yourself during recovery, like binge watching your favorite TV shows.

In the meantime, please let us know if there are other questions or concerns you'd like to discuss. Best of luck!

Hi again all. So I have spent some time reading through lots of posts having asked my question as I thought it would be beneficial.  I'm quite surprised at the level of difficulty many have experienced, and many echo my experience of having the risks glossed over.

Of course I'm sure there are many positive experiences that we don't hear about.

No one can give me the answer that we all want, which is that everything will be perfect!  I just hope that generally medical staff are being honest and not focused on targets/ reducing waiting lists!