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91



https://www.statesman.com/story/news/2023/04/23/austin-dell-seton-medical-center-helps-living-kidney-donor-celebrate-life/70088592007/

Why I chose to celebrate life by becoming a living kidney donor

Nicole Villalpando

The clapping follows me as my hospital bed rolls through the hallways on the second floor at Dell Seton Medical Center on March 21. Nurses, technicians, doctors, therapists and hospital administrators line the path and clap for me as I make my way to the operating room.
We pause in a hallway for me to ring the Living Donor Bell. I get teary.
This is really happening. I am donating my left kidney to a person in Massachusetts I do not know.
I am taking one of the 96,066 people in the United States currently waiting for a kidney off the list. Last year, only 25,499 people nationally received a kidney transplant, about a fourth of the people who needed one. My kidney recipient will not be one of 13 people a day who die waiting for a kidney.
Checking the box
When I got my first driver's license on my 16th birthday, I checked "organ donor" on the application form. Why? If I died in car accident, I would want my organs to help somebody after I'm gone.
I knew you could give a kidney while still alive but thought you had to give it to a family member or someone you knew. My kidney had to stay in place for my family or future family in case they needed one, I thought.
Then I became a health reporter in January 2022. I covered the first kidney transplants at Dell Seton as it began a program to join an existing one at St. David's North Austin Medical Center. One of those first surgeries in February 2022 was a woman giving a kidney altruistically, meaning she did not know her donor. She signed up through the National Kidney Registry to be a donor and then was matched with someone who needed a kidney.
I was inspired and asked myself: Would I ever do that? Could I ever do that?
The National Kidney Registry is a nonprofit that facilitates living kidney donations. Often, it helps people who need a kidney but don't have a relative or friend who is a match. The recipient and willing donor begin what is called a chain, with each going through a review process until the right donor and recipient are matched. It can take several pairs of donors and recipients until everyone is matched.

In September, I covered a story of another altruistic donor who made his donation at St. David's North Austin Medical Center. He was the first person in Texas to be part of a pilot program from Donate Life America, a nonprofit that registers organ donors. Instead of clicking a box when you get your driver's license or renew your car registration to be an organ donor, you click a box online noting that you are interested in being a living kidney donor.
Through this donor, I learned about the voucher system. A living donor can name up to five people to receive a voucher should they need a kidney. These people would have priority for a kidney because their loved one had donated one and could no longer donate to them. Donors also are given priority if they should need a kidney in the future. The chance of that, though, for my gender and age, is 0.2% at the 20-year mark after donation.
My fear that I needed to keep my kidney in case my family needed one dissipated with the voucher system.
State Sen. Kelly Hancock, R-North Richland Hills, has introduced Senate Bill 1249 to establish a Living Donor Registry Education Program, which would build on the pilot program and make education available on the Department of Public Safety's website. Rep. Tom Oliverson. R-Cypress, filed the companion House Bill 2826. Hancock said he expects no opposition to the bill.
Hancock received a kidney last July from his son-in-law after being told seven years ago that his kidneys were failing. By the time of his transplant, Hancock's kidneys were down to about 10% function.
"It changed my life," he said of the transplant.
The need in Texas for kidneys far exceeds the available supply. At the beginning of April, 9,640 people were waiting for a kidney. Last year, 2,394 people in Texas received a kidney transplant.
"There are 28 million people in Texas. We could get everybody off the list," said Dr. Jacqueline Lappin, the former surgical director of the Kidney Transplant Center at St. David’s North Austin, citing the potential of the new online button to register people to become living kidney donors.
People wait an average of six years after they are listed for a kidney transplant, sometimes longer if they have a difficult blood type or unusual antibodies. The longer people wait for a kidney and are on dialysis, the less likely a candidate they are for a transplant, Lappin said, citing a decline in health.
In Texas last year, 650 kidney recipients had living donors.
Most transplanted kidneys last seven to 20 years. A living kidney donation lasts about twice as long as a donation from a deceased person because a deceased donor's kidney has been through a trauma. Kidneys from a living donor tend to work right away, Lappin said.
Inspired by that story, and to test whether the pilot program worked, I went online Sept. 19 and checked the box at donatelife.net that I was interested in being a living donor. On the online form, I had to choose between two centers in Austin: St. David's North Austin and Dell Seton. I chose Dell Seton because it was closer to my house, and I was familiar with the surgical team from past stories. The form told me that the transplant center would contact me. It did a month later.
Getting the email
On Oct. 19, I received a questionnaire email from the National Kidney Registry. I had to outline my medical history, my family's medical history and what medications I take.
More than 50% of potential kidney donors don't qualify, often due to medical history or because of the intense health screening process.
I thought my dad's kidney troubles due to diabetes might knock me out; or my preeclampsia while pregnant with my son, now 22; or my high blood pressure, controlled via medication since I was 27.
None disqualified me.
Then I received an email with lab orders on Oct. 26 to do preliminary testing and scheduled blood work and a urine sample.
I began to casually mention my desire to donate a kidney to my family, including my husband and both children.
No one thought this was a good idea.
"I don't like this at all," my dad said.
"No, you're not," my daughter told me.
My mom, calling it "noble" and knowing I would do whatever I wanted, said she was concerned for my health.
Once the process started, the National Kidney Registry connected me with a peer support specialist and an independent living donor advocate through the Living Bank. Their jobs are to answer my questions and verify that I was doing this for the right reasons, not being paid for my kidney or pressured into donating.
The next test
At this point, I was in touch with Katie Mooney, a registered nurse and the living transplant coordinator at the Abdominal Transplant Center at Dell Seton, a joint program of Ascension Seton and UT Health Austin at Dell Medical School.
I made sure she knew that I was the reporter at the Statesman who had been covering the new transplant program and that Dr. Nicole Turgeon, the transplant director, and the rest of the team knew my affiliation. If it was too weird for them, I'd back off. I assured them I wasn't in this for a story. I just wanted to help someone.
I passed the initial blood and urine tests.
The next step: wear a blood pressure monitor for 24 hours, strapped around my waist with a cuff attached to my left arm. Every 15 to 20 minutes the cuff would inflate and take a reading. Sleeping was difficult. The only time I could take it off was to shower.
My blood pressure was fine. Another test passed.
The big workup
At the Statesman, I run the Season for Caring nonprofit program to help local nonprofit organizations and families with basic needs. My Decembers are a marathon of stories and coordination. When Mooney called to schedule my daylong workup in December, I knew I needed to put it off until the beginning of January. Being an altruistic donor means you get to set the timetable.
On Jan. 3, I walked into the Abdominal Transplant Center to spend half a day with the staff before being sent to Dell Seton across 15th Street for scans. It was a long day. I arrived at 8 a.m. and left around 4 p.m.
Mooney took more blood: 15 vials of it, and more urine.
One by one, therapists and doctors came in to ask questions about my life and talk about the risks of donating.
"There is no benefit to the donor," they repeatedly reminded me.
While done laparoscopically, the surgery would leave me with three tiny incisions on my left side and a larger incision below my bellybutton. They could become infected. I could need a blood transfusion. I could throw a blood clot that could go to my heart, lungs or brain. The risk is death, like any surgery.

Plus, no lifting anything heavier than 10 pounds for six weeks to avoid a hernia.
I met with a dietitian who let me know I would need to watch my protein intake. Too much protein could damage my remaining kidney because the kidneys filter protein.
The pharmacist went over my medication and let me know that I would need to avoid taking nonsteroidal anti-inflammatory drugs such as Advil for the rest of my life to protect my one kidney and liver. I could not take new medications including supplements without consulting the team about any impact to my kidney.
I met Dr. Brian Lee, a nephrologist, who talked about my medical care postsurgery and the risk of developing higher blood pressure in my case.
My remaining kidney, though, would grow in size, and instead of doing 50% of the work with two healthy kidneys, it would do 80% of the work. I would never get back to 100%.
I met with a psychologist to discuss my reasons for giving. I told her that not only was I thinking about the person on the other end who would be healthier because of me, but I saw this as a celebration of my health. Seven years ago, I lost 50 pounds, started exercising, got my high cholesterol into a healthy range and worked on improving my blood pressure. I accomplished that.
Now, turning 50 this year, I thought of giving a kidney as my birthday present to myself.
The psychologist wanted to ensure that I would have support at home from my family during my recovery.
I also met with a financial counselor. All the surgery costs, the presurgery workups and postsurgery care are covered by the recipient's insurance. I've seen only one bill, for $167, accidentally. I was instructed to send that to the financial counselor to have it billed correctly.
The counselor also informed me of programs to help offset loss of wages. Because I have paid time off, I would not need that help.
My next step was to go to the lower level of Dell Seton to get a chest X-ray, a CT scan with contrast and an ultrasound of my heart.
As a health reporter, I do a lot of stories about people who go in for a simple X-ray for a broken bone and find out they have cancer. I was convinced the scans would reveal something bad. They did not.
So many bodily fluids
My next step was to spend 24 hours collecting my urine into a large canister that looked suspiciously like an orange juice jug. I then had to bring that jug to the transplant clinic immediately.
By this point, with my son home from college, I told him of my intention to give a kidney. "Your body, your choice," was his response. He's kind of a matter-of-fact kid.
When Mooney called me Jan. 13 to tell me that all of my tests looked good, I was in disbelief.
Finally on Feb. 7, the transplant team — the surgeons, nephrologists, psychologist, dietitian, pharmacist and transplant coordinator — met to discuss my medical records and candidacy to be a living donor.
When Mooney called me the next day to say I was approved, I grinned ear-to-ear.
I had a choice of when to be listed. But once listed, I needed to have at least a three-week window of availability for surgery. I decided to get listed immediately.
There was still more paperwork. I had to sign a form with the National Kidney Registry that I understood how the voucher program worked. I had to list my five people who I wanted to get a voucher. I chose both children, my husband and my two brothers.
My chosen family members also had to file paperwork that they wanted to be part of the voucher program.
By this point, I had begun telling my employers and a few friends that I was going to be donating a kidney. The reaction was usually, "That's so cool!" followed by, "Are you sure you want to do this?" followed by, "What does your family think?" followed by, "Who is it going to?"
Getting listed
I became listed for donation Feb. 21. Mooney expected my kidney would go fast because my blood type is O-positive. This is the hardest blood type to find a kidney for because even though O-positive people are universal donors, they can receive only O-positive blood and organs. In the U.S., of the 96,066 people waiting for a kidney, 52,376 are Type O. In Texas, 5,767 people are waiting for a Type O kidney of the 9,640 people on the list.

Locally, the "vast majority" of people waiting for a kidney transplant are Type O, Turgeon said, and they have the longest waiting time. "We need a lot of O's," she said.
Getting a kidney for people who are Type O who also have a lot of antibodies is "like a needle in a haystack to find," she said.
For me, this scarcity of Type O organs was another reason to give the kidney now, while I'm healthy. All my family members and my husband are O-positive.
Making a match
Mooney called me Feb. 27. We had a match. The only thing she could tell me was that the recipient was in Massachusetts and we had a surgery date of March 21. Did I want to go ahead with this match? It was my choice.
I felt an almost overwhelming connection to this person immediately. I imagined what they and their family felt when they got the call. I just remember beaming and clapping and feeling overwhelmingly happy.
A friend who donated a kidney in October on behalf of her husband who was O-positive, and started a chain by donating, told me, "Someone right now is praying for you" — praying that my kidney would arrive on the registry and be a match for them.
I got teary just thinking about her family's struggle to find a kidney and the struggle of the person I was matched with. Our identities will be kept anonymous until both of us sign letters that we would like to contact each other.
I was listed for only six days, which "was very quick," Turgeon said. "That's a function of being a blood type O."
Prepping for surgery
That same friend gave me some good advice: Start doing abdominal exercises right now. So every night I did at least 15 minutes of ab work, which I did not grow to love.
On March 7, the phlebotomist returned to my house to take more blood — 12 fat vials this time. Some of it went to the Massachusetts hospital where the recipient would have the transplant. The rest went to a lab in California.
Again I got a phone call from an independent living donor advocate through the Living Bank to make sure I wasn't being paid or coerced into giving a kidney.
On March 16, I spent 2½ hours with the team at the Abdominal Transplant Center. More blood had to be taken to make sure my levels, particularly my creatine level, which is about kidney function, qualified for donation. My level had been 0.8 the first time and 0.7 another time, but once it was 1.0, which is normal but not good enough for me to give a kidney. It needed to be below 1.0.
I was convinced I would be knocked off. Even though I knew I could decide not to give at any point, I already felt responsible to this person to give them the healthiest kidney and not dash their hopes.
My number was 0.8.
I again met with the dietitian, the psychologist, a nephrologist and Turgeon.
She described the surgery in even more depth to me. I would be on my right side with my left side up. My abdomen would be pumped up with gas to create space to operate. Then she and fellow surgeon Dr. Joel Adler would carefully cut away the connective tissue using scissors that cauterize. They would lift up my bowels to move them out of the way to access my left kidney.
They would clamp off the renal artery, the vein and the ureter in my left kidney, all using laparoscopic tools. Then they would cut between the clips to disconnect them. Once everything was disconnected, she would grab my kidney with her hand and pull it through a 3-inch vertical incision below my bellybutton.
They would then prepare my kidney on a back table and take measurements and pictures of it. It would be flushed with saline to remove any blood. Then it would go in a plastic bag filled with saline and secured with a twist tie. The bag would go into a plastic container and be put in a garbage bag filled with ice. Everything goes into an insulated cardboard box.
The whole procedure would take about 90 minutes.
Because I had watched previous transplants, I didn't have a lot of questions, but somehow having her describe it and knowing it would be me on the table this time made me a little queasy.
Again and again, I was told I could back out at any time and no one would judge me.
Getting ready
My only presurgery instructions were to get lots of rest over the weekend.
That Monday, I also met with fellow kidney donors at a Donate Life event. They gave me great advice about my recovery: Wear your baggiest sweatpants, an oversized shirt and slip-on shoes to the hospital because you won't be able to fit in or want anything tight on your body after the surgery.
That night, I slept very little. It's like when you have to go to the airport for an early flight. You worry you'll oversleep so you don't sleep.
The day arrives
On March 21, I arrived at Dell Seton for the surgery. I was tired and excited but not scared. Really, I just wanted to get through to surgery. Turgeon had warned me that right up until surgery something could happen on either the donor side or the recipient side that would postpone it or disqualify me.
Even going through the motions of getting into the gown, answering an anesthesiologist's questions and giving more blood, I still had an underlying disbelief that it would happen.
And yet, I found myself being rolled through the hallways with clapping people lining the sides. Everyone thanked me for this gift, told me how amazing I was. For me, it felt like the right thing to do, the thing I was meant to do.
I rang the bell, arrived in the operating room and slid onto the table. It was 6:46 a.m., the clock on the wall said. And then I was sedated.
My kidney's next life
While I was sleeping, my kidney was boxed up with labels on it that said, "Living Donor Organ for Transplant" and "Handle with Care." Inside that box, along with my kidney, was a vial of my blood that would go to the center to make sure the recipient and I were still compatible. A GPS tracker was inserted for both centers to know exactly where that organ was at all times.
More of my blood will be stored for 10 years in case there is ever a problem with the donor or the recipient. There will be a record of my health at the time of donation.
The box was placed in the backseat of an organ recovery transport team SUV and driven to Dallas, where it was put on an American Airlines flight to Boston. Some airlines put organs in the cockpit; others put them in the cargo hold. Organs are given priority, but they don't have a person accompanying them. Think of them as an unaccompanied minor.
My organ arrived in Boston at 8:30 p.m. A kidney can stay outside the body for up to 36 hours, but the sooner the better, ideally within 24 hours.
The recipient received my kidney that night.
Turgeon later learned that everything had gone as planned with the recipient.
The day after I donated my kidney, the federal government announced a plan to overhaul the Organ Procurement and Transplantation Network. Some of the criticism is that the waiting list is too long and organs are having to travel too far, rather than staying close to the donor.
"We don't want to see the system dismantled," Turgeon said. "We want it improved."
She wants to see more funding to improve the technology and modernize the system. The goal is: "How can we get the kidney to the right patient all the time?"
For every possible transplant patient, she has to have the conversation about finding a living donor as their best bet for a kidney.
For people who give a kidney, the voucher system does elevate people on the list, and it makes sure that a donor's family members will be given priority in exchange for that donation.
Is all of this fair? I don't know, but I like to think my kidney went to the person in most need who matched me. It's also reassuring that my family will be prioritized because I gave this gift.
Recovering
When they woke me up and wheeled me to my room, I remember feeling as if I were on a roller coaster. I could hear my husband's voice asking the nurse something, but I was out of it. I just wanted to go back to sleep.
I didn't hurt, but I did have cramping from my side muscles where laparoscopic tools had been working. The nurse gave me a belly band — fabric that wrapped around my whole abdomen and held it in. That helped with the cramping. I wore it for about a week until my muscles improved. I was acutely aware that my abdominal muscles had taken a hit. I couldn't roll over or sit up, really.
Every six hours I got Tylenol, OxyContin if I needed it and Toradol.
That afternoon, the Abdominal Transplant Team came to visit. I was the 10th living donor for this program. They have done 12 transplants, and two pediatric transplants. They expect to be doing 75 transplants by year five, which is the same as what St. David's North Austin is doing.
The team at Dell Seton is also now approved to do pancreas transplants, which haven't been done in Austin. Liver transplants are expected to start in 2025 or 2026, which also will be a first for Austin.
To be able to go home, I had to eat something in the morning and get rid of the catheter. Then I had to show that I could urinate on my own, walk around safely and pass gas. If everything checked out, I could go home.
I passed those tests.
By 11:30 a.m. March 22, I was home.
Recovering at home
Here's what I discovered: I am a bad patient. I heard, "Take it easy," but I'm not good at that. I have followed the no-lifting rule, but it kills me every time I have to ask someone to carry this or hold that.
I started walking right away. That first day, I could barely make it to the mailbox halfway down the block and back. The next day, I made it to the end of the street. I added a quarter of a mile at a time until I had hit two miles twice a day. But I am tired all the time. Part of that is the surgery recovery and the anesthesia, but also my body is adjusting to one kidney. I need a daily nap.
At my two-week post-op visit, Turgeon declared that I was doing exceptionally well. My scars look amazing. My kidney is functioning well. We are watching my blood pressure because it has creeped up.
Not a day that goes by that I don't think of that person in Massachusetts who is living with my kidney. We are bonded forever. I wish them and their family only the best.
I have no regrets. Becoming a living donor has been such an honor.
How to become a living donor
You can contact a kidney transplant center directly at St. David's North Austin Medical Center or Dell Seton Medical Center, or you can go to donatelife.net.
92
https://onlinelibrary.wiley.com/doi/abs/10.1111/ctr.14968?campaign=wolearlyview

Advances and innovations in living donor liver transplant techniques, matching and surgical training: Meeting report from the living donor liver transplant consensus conference

Mark Sturdevant, Swaytha Ganesh, et al.
Clinical Transplantation
First published: 11 April 2023 https://doi.org/10.1111/ctr.14968

Abstract
The practice of LDLT currently delivers limited impact in western transplant centers. The American Society of Transplantation organized a virtual consensus conference in October 2021 to identify barriers and gaps to LDLT growth, and to provide evidence-based recommendations to foster safe expansion of LDLT in the United States. This article reports the findings and recommendations regarding innovations and advances in approaches to donor-recipient matching challenges, the technical aspects of the donor and recipient operations, and surgical training. Among these themes, the barriers deemed most influential/detrimental to LDLT expansion in the United States included:
prohibitive issues related to donor age, graft size, insufficient donor remnant, and ABO incompatibility; lack of acknowledgment and awareness of the excellent outcomes and benefits of LDLT; ambiguous messaging regarding LDLT to patients and hospital leadership; and a limited number of proficient LDLT surgeons across the United States. Donor-recipient mismatching may be circumvented by way of liver paired exchange. The creation of a national registry to generate granular data on donor-recipient matching will guide the practice of liver paired exchange. The surgical challenges to LDLT are addressed herein and focuses on the development of robust training pathways resulting in proficiency in donor and recipient surgery. Utilizing strong mentorship/collaboration programs with novel training practices under the auspices of established training and certification bodies will add to the breadth and depth of training.
93
https://health.economictimes.indiatimes.com/news/industry/all-living-donor-liver-transplant-will-be-robotic-surgery-in-near-future-dr-arvinder-soin/99606995

All living donor transplants will be done by robotic surgery in near future: Dr Arvinder Soin

Several toxic medicines and alternative therapy products cause liver damage. During the COVID pandemic, we saw several cases of liver failure due to excessive consumption of giloy juice and capsules.
94
https://onlinelibrary.wiley.com/doi/abs/10.1111/xen.12794?campaign=woletoc

Attitudes of patients with renal disease on xenotransplantation: A systematic review

Isabel DeLaura, et al.
Xenotransplantation
First published: 07 March 2023 https://doi.org/10.1111/xen.12794

Abstract
Background
Recent years have seen major advancements in xenotransplantation: the first pig-to-human heart transplant, the development of a brain-dead recipient model for kidney xenotransplantation, and the registration of the first xenokidney clinical trial. The attitudes of patients with kidney disease or transplants on xenotransplantation and an assessment of their reservations and considerations regarding the technology are crucial to successful clinical translation and eventual widespread implementation.
Methods
This systematic review was registered through PROSPERO (CRD42022344581) prior to initiation of the study and reported using the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) guidelines. We included studies that evaluated attitudes towards and willingness to undergo xenotransplantation in patients with end-stage renal disease (ESRD), including those who had already undergone transplantation. MEDLINE (via Ovid), Embase (via Elsevier), and Web of Science (via Clarivate) were searched from database inception to July 15, 2022 by an experienced medical librarian for studies on xenotransplantation and attitudes. Abstracts and full text were screened using Covidence software and data items regarding study methodology, patient demographics, and attitudes regarding xenotransplantation were extracted using Microsoft Excel. Risk of bias assessments were performed using the Critical Appraisal Skills Programmed and National Institute of Health study quality assessment tools.
Results
Of 1992 studies identified, 14 studies met the inclusion criteria. These studies were conducted across eight countries, four in the United States, for a total of 3114 patients on the kidney waitlist or with a kidney transplant. All patients were over 17 years old and 58% were male. Acceptance of a xenotransplant was assessed using surveys in 12 studies. Sixty-three percent (n = 1354) of kidney patients reported that they would accept a xenotransplant with function comparable to that of an allotransplant. Acceptance of xenografts with inferior function to allografts (15%) or as bridge organs (35%) to allotransplantation was lower. Specific concerns expressed by patients included graft function, infection, social stigma, and animal rights. Subgroup analyses showed higher acceptance in already transplanted compared to waitlist patients and white compared to Black Americans.
Conclusion
An understanding of patient attitudes and reservations is key to the successful execution of the first xenotransplantation clinical trials. This study compiles important factors to consider, such as patient concerns, attitudes regarding practical clinical scenarios for the use of xenotransplantation, and the impact of demographic factors on acceptance of this emerging technology.

95
Living Donation in the News / Dual living donor organ transplants
« Last post by Clark on April 16, 2023, 07:00:26 PM »
https://onlinelibrary.wiley.com/doi/abs/10.1111/ctr.14923?campaign=woletoc

Dual living donor organ transplants

Rainer W. G. Gruessner, Angelika C. Gruessner
Clinical Transplantation
First published: 26 January 2023 https://doi.org/10.1111/ctr.14923

Abstract
Introduction
Dual organ donation and transplantation from living donors (LDs) is a rare practice. Dual organ transplants can be done from the same LD or from different LDs and either simultaneously or sequentially. Simultaneous dual organ transplants from the same LD are of considerable concern due to the magnitude of the donor procedure.
Methods and Results
According to the UNOS/OPTN and IPTR databases, the US experience of LD dual organ transplants from 1981 to 2021 comprised 101 simultaneous or sequential dual organ transplants from the same LD and 111 transplants from different LDs for a total of 212 LD dual transplants. The first simultaneous or sequential dual organ transplants from either the same LD or different LDs were pancreas-kidney transplants (n = 92). Four additional LD organ transplant combinations have been performed in the United States: liver-kidney (n = 93), lung-kidney (n = 16), liver-intestine (n = 9), and intestine-kidney (n = 2). Only for dual pancreas-kidney (n = 49) and liver-intestinal transplants (n = 4), organs from the same LD have been procured simultaneously. Importantly, no donor deaths have been reported after any simultaneous or sequential procurement. LD dual organ outcomes in all recipient categories have been excellent.
Conclusions
LD dual organ donation and transplantation is safe and successful. Any potential dual organ LD candidate must be subject to the highest level of evaluation scrutiny. A (dual) organ donor registry is warranted for long-term follow-up.
96
https://onlinelibrary.wiley.com/doi/abs/10.1111/ctr.14927?campaign=woletoc

Donor's long-term quality of life following living-donor lobar lung transplantation
Kento Fujii, et al.
Clinical Transplantation
First published: 04 February 2023 https://doi.org/10.1111/ctr.14927

Social Media: Living lung donors in Japan maintained good long-term HRQOL after transplantation. However, some had risks of poor HRQOL, such as recipient death, lung allocation score, and donor and recipient age.

Abstract
Introduction
Living-donor lobar lung transplantation is an alternative procedure to deceased donation lung transplantation. It involves graft donation from healthy donors; however, only a few reports have discussed its long-term prognosis in living lung donors and their associated health-related quality of life. This study aimed to examine living lung donors’ health-related quality of life.
Methods
In our cross-sectional survey of living lung donors, we assessed health-related quality of life-based on three key aspects (physical, mental, and social health) using the 36-Item Short Form Health Survey. We also evaluated chronic postoperative pain and postoperative breathlessness using the numeric rating scale and the modified Medical Research Council Dyspnea scale, respectively.
Results
We obtained consent from 117 of 174 living lung donors. The average scores of the living lung donors on the 36-Item Short Form Health Survey were higher than the national average. However, some donors had poorer physical, mental, and social health, with lower summary scores than the national averages. Low mental component summary predictors included donor age (<40 years; odds ratio = 10.2; p < .001) and recipient age (<18 years; odds ratio = 2.73; p < .032). Low role-social component summary predictors included high lung allocation score (≥50; odds ratio = 3.94, p < .002) and recipient death (odds ratio = 3.64; p = .005). There were no predictors for a physical component summary. Additionally, many donors did not complain of pain or dyspnea.
Conclusions
Living lung donors maintained an acceptable long-term health-related quality of life after surgery. Potential donors should be informed of relevant risk factors, and high-risk donors should receive appropriate support.
97
https://onlinelibrary.wiley.com/doi/abs/10.1111/ctr.14908?campaign=woletoc

Factors enabling transplant program participation in the Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective: A national survey

Krista L. Lentine, Mary Amanda Dew, Huiling Xiao, Addie Wisniewski, Macey L. Levan, Fawaz Al Ammary, Asif Sharfuddin, David A. Axelrod, Amy D. Waterman, Bertram Kasiske
Clinical Transplantation
First published: 09 January 2023 https://doi.org/10.1111/ctr.14908

Abstract
Background
The Scientific Registry of Transplant Recipients (SRTR) Living Donor Collective (LDC), the first effort to create a lifetime registry for living donor candidates in the United States, requires transplant programs to register donor candidates while the SRTR conducts follow-up.
Methods
To better understand facilitators and barriers to program participation, we conducted a brief electronic survey of U.S. transplant program staff from October 26, 2021 to December 17, 2021.
Results
We received 132 responses, with at least one response from 87 living donor programs (46 kidney programs, 33 kidney and liver programs, and eight liver programs alone). We found 86% of program representatives strongly agreed or agreed that funding adequate to cover the cost of data collection would facilitate LDC participation, 92% agreed or strongly agreed with importance of electronic data submission options, and 74% reported that elimination of requirements to submit duplicative pre-operative information to the Organ Procurement and Transplantation Network (OPTN) would be helpful. Other potentially enabling factors include reduction in duration of OPTN postdonation follow-up requirements, ease-of-use, protection from data use for regulation, adequate data security, and equity in data access.
Conclusion
This survey identifies potential targets to strengthen participation in the effort to create a national living donor registry in the United States. Collaboration and investment to overcome barriers to LDC participation among transplant programs are vital to generate long-term data on living donation for donor candidates, donors, and patients in need of transplant.
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https://richmond.com/lifestyles/health-med-fit/unos-organ-transplantation-network/article_cdbcbc24-d87c-11ed-8607-5ba6d8f4eeed.html

Richmond's organ transplantation network sued over racial equity issue
   Eric Kolenich

A California man has filed a class-action lawsuit against the Richmond-based United Network for Organ Sharing, alleging UNOS failed to sufficiently address the racial equity problems of kidney transplantation.
For years, Black Americans have waited longer for kidney transplants than people of other races. Plaintiff Anthony Randall alleges that because UNOS was slow to change and implement a new policy, Black patients unfairly suffered with kidney disease for longer periods of time.
Randall, who is Black and awaiting a kidney transplant, filed the lawsuit last week in a federal court in Los Angeles. He is seeking at least $5 million from UNOS and Cedars Sinai Health Ventures, his transplant hospital.

The suit touches on a significant debate in transplantation. UNOS for years used an allocation policy now considered racially discriminatory. The organization announced plans last year adjust it, but UNOS is giving hospitals until 2024 to respond.
“Black Americans continue to suffer racial discrimination in the kidney donation process, despite all involved admitting that the current process is discriminatory to Black Americans,” the suit claims.

Kidney function is measured by estimated glomerular filtration rate, or eGFR. A patient’s eGFR score is used to determine when a patient can be placed on the national kidney waitlist.
When the tests for eGFR were developed, doctors noticed that Black Americans produce higher levels of creatine, a chemical the body uses to make energy for muscles. Doctors falsely assumed the high levels were the result of Black people having greater muscle mass than white people. A more recent study stated that it is unclear why Black people have higher levels of creatine.

Because of this flawed notion, the creators of eGFR added a race-based coefficient that inflates the scores of Black residents by 16-18%. In essence, the test makes Black Americans look healthier than they really are, pushing them further back in line for kidney transplants.



The National Kidney Foundation and the American Society of Nephrology recommended removing Black race as a factor in the calculation. The lawsuit calls the racial coefficient “junk science supported only by racial stereotypes and not any valid scientific studies.”

“It’s racially biased and means people of color are deprioritized in terms of access to the list,” said Molly McCarthy, vice chair of UNOS’ patient affairs committee. “That’s terrible.”

In June of last year, UNOS announced it would outlaw the use of the race-based coefficient when measuring eGFR scores. But for six months, it did nothing to move up Black patients closer to the front of the waitlist.
In January, UNOS instructed donor hospitals to investigate whether Black members of the donor list should be moved up. UNOS gave donor hospitals until January 2024 year to complete this process.

But people desperate for a kidney cannot wait that long, the suit claims.
Black Americans are “missing out on donor kidneys they rightfully should have been awarded, incurring significant economic losses, suffering from worsened kidney disease, and in some instances, dying,” the suit states. Black Americans are more likely to suffer kidney failure than any other race, according to the American Kidney Fund.
UNOS’ patient affairs committee brought up the matter to UNOS leadership three years ago, McCarthy said. The committee pleaded for a fast response, but UNOS has moved methodically.
The eGFR problem is emblematic of UNOS’ inability to respond to needed change, McCarthy said. The organization is under a Congressional investigation for issues in its technology, delivering organs to their destinations and disciplining struggling organ procurement organizations.

“It’s yet another symptom of the same problem and behavior we see way too consistently,” McCarthy said. “Nothing happens despite the urging of communities like ours driven by patients.”
Randall, the plaintiff, developed the symptoms of kidney disease 24 years ago. He took eGFR tests for years, but the results indicated he was not sick enough to join the kidney transplant wait list.

Patients wait an average of three or four years for a kidney, depending on their blood type and geographic location, McCarthy said. Kidneys are allocated depending on the length of a time a patient has waited and the health of the patient’s kidneys.
Randall has waited more than five years, the suit claimed. He asserted that, had his tests been conducted correctly, he would have received his kidney already.
Randall filed the lawsuit on behalf of the nearly 28,000 Black people on the national kidney waitlist. There are roughly 100,000 Americans on the list.


The suit claims there are 205 Black patients at Cedars Sinai waiting for a kidney. The hospital announced last month it would begin reviewing the waitlist and would re-order it if needed. But the process will take several months. A spokesperson for UNOS declined to comment.
Dr. Jayme Locke, head of transplantation at the University of Alabama at Birmingham, said last year that the process of changing eGFR is broader than organ transplantation and involves how hospital labs function and how they dose medication.
But McCarthy said there is no reason to wait to allocate kidneys in a fair manner.
“There’s no pass because it’s hard,” McCarthy said. “You do the work.”




https://bloximages.newyork1.vip.townnews.com/richmond.com/content/tncms/assets/v3/editorial/3/48/3485e2fc-d8b2-11ed-885e-43645fa98c78/6435d52322e1a.pdf.pdf

ANTHONY RANDALL, Plaintiff, vs. UNITED NETWORK FOR ORGAN SHARING; CEDARS SINAI HEALTH VENTURES, Defendant.

COMPLAINT FOR:
VIOLATION OF TITLE VI OF THE CIVIL RIGHTS ACT OF 1964;
VIOLATION OF THE UNRUH CIVIL RIGHTS ACT [CALIFORNIA CIVIL CODE § 51];
BREACH OF FIDUCIARY DUTY; AND
VIOLATION OF CALIFORNIA’S UNFAIR COMPETITION LAW [CAL. BUS. & PROF. CODE § 17200 ET SEQ.] Action Filed: April 5, 2023


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https://www.cnn.com/2023/04/06/health/doctor-donates-kidney/index.html

This Chicago doctor donated her kidney to a woman in Virginia she’d never met

By Kyla Russell

More than 90,000 people in the United States are waiting for a kidney donation, but Dr. Aleksandra Gmurczyk helped take two people off the waitlist when she donated her own kidney to Ginger, a woman she had never met, and launching a kidney-paired donation.
A kidney-paired donation happens when a person is willing to donate a kidney to someone in their life who needs it, but they aren’t a good match, so they swap recipients with another donor.
In this case, Gmurczyk’s kidney was donated in February to Ginger, who had “hard-to-match” kidneys. Ginger’s husband, Gary, was not a match for his wife. He donated his kidney to a Northwestern Medicine patient.

Ginger and Gary did not want their last name reported.
“I am so glad to meet you,” Gmurczyk, a nephrologist and associate professor at Northwestern Medicine, told Ginger when meeting her at a news conference Thursday. “I’m so glad you got my kidney, and I can tell you’re going to take really good care of it.”
“I did not want to donate specifically to one person,” Gmurczyk told CNN, adding that with a kidney-paired donation, she felt like she had a chance to help more people.
In 2020, there were 22,817 kidney transplants performed in the United States because of conditions like kidney disease or failure, according to the National Institutes of Health. On average, it takes about three to five years for a patient to be matched with a kidney donor, according to the National Kidney Foundation.
Doctors have donated their own kidneys to patients before: According to Maine Health, Dr. Aji Djamali, chair of the Department of Medicine at Maine Medical Center, donated his kidney to a former patient last year.
In 2002, Dr. Susan Hou, a nephrologist at Michael Reese Hospital, Rush University Medical Center and Loyola University Medical Center, donated her kidney to a patient, according to the Wednesday Journal of Oak Park and River Forest.
But Gmurczyk wanted to donate to help educate patients.
She often sees patients who have kidney failure, which renders their kidneys unable to filter waste and toxins out of their bloodstream. Many undergo dialysis, a taxing treatment that helps remove waste and extra fluids from the blood.

Although treatment varies depending on the level of care needed, dialysis is typically done three times a week for about four hours at a time, according to the National Kidney Foundation.
“It’s like a part-time job,” Gmurczyk said. “It is stressful, and it is sad, and they feel isolated and lonely. Many of them work, but not many of them can.”
Before the transplant, Ginger was undergoing dialysis.
“It would have been two years yesterday that I started dialysis,” she said. “About a week or two before I got my transplant … it started getting worse.”
Despite the long list of people awaiting donation, some of Gmurczyk’s patients are still leery of undergoing a transplant because of things like mistrust of the health care system or the requirements for donation.
Nine years ago, Gmurczyk began thinking about how she could change those people’s minds. She decided to donate one of her own kidneys to help increase the level of trust in the procedure and to inspire others to donate.
“The reason why I wanted to donate is that … I can go to them and say, ‘I donated my kidney, and I believe that people who receive a kidney transplant live longer, healthier lives, and I believe in this so much that I donated,’ ” she said.
Gmurczyk says kidney donations from living people usually begin working immediately and can function for twice as long as those from deceased donors: 15 to 20 years vs. 10 to 12 years, respectively.
She applied to join a donation pool, which led to the kidney-paired model.
After she was matched with Ginger in Virginia, Gmurczyk’s donor journey was a typical one, including things like kidney function tests and abdomen screenings to find the smaller kidney, which is ultimately donated.
Her care team included another nephrologist, a pharmacist, a surgeon, a social worker and a donor advocate.
Donor advocates work to ensure that donors are not being coerced or paid to have the procedure. Social workers help the donor set up the best social support to make sure they are taken care of at home after the procedure.
“People who get a transplant need a social support person, and a lot of people do not even have one person to help them after the transplant,” Gmurczyk said.
After she had the surgery and spent the night in the hospital, a friend came to help her get home, but Gmurczyk felt well enough to walk.
“I was able to take care of my dog the next day,” she said. “I was doing everything for myself.”
She took two weeks off work and did not have any problems returning.
Her decision to donate has already paid off, she says: One of her patients who had been skeptical of getting a kidney transplant was inspired to begin the evaluation process.
At Thursday’s news conference, Gary also met his recipient, Arturo “Art” Reyes.
Reyes was particularly emotional.
“I didn’t think there was any hope anymore,” he said. “There’s really no words to say thank you. You’ve given me life back.”
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https://unos.org/transplant/improve-organ-donation-and-transplant-system/

UNOS Actions to strengthen the U.S. organ donation and transplant system
Driving system-wide improvement to better serve patients

“Our national donation and transplant system saves thousands of people’s lives every year, but as long as there are patients on the waiting list, there is more we need to do.”
Maureen McBride, Ph.D.
UNOS Interim CEO
Introduction[/url][/font]
Patient empowerment
Equity
Data collection
Transparency
Transportation
IT improvement
Oversight
Governance[/font][/size]
More than 42,800 organ transplants were performed in the U.S. in 2022, an increase of nearly 1,500 over the previous year. The system’s success reflects its commitment to continuous improvement, which has driven 10 consecutive years of increases in the number of deceased-donor transplants performed. Thanks to the efforts of the national transplant network, 23 percent more deceased-donor transplants are performed today than five years ago.

But there is more work to do.

More than 100,000 people are waiting for a transplant. Every day, they count on the organ donation and transplant community to do everything it can to strengthen the system and ensure that patients have equitable access to lifesaving organs.

United Network for Organ Sharing (UNOS), the mission driven non-profit that serves as the Organ Procurement and Transplantation Network (OPTN) under contract with the federal government, is proposing reforms that will improve the U.S. organ donation and transplant system. We have also outlined changes to the OPTN contract that we believe will hold all parts of the system accountable to better serve the patients who rely on us every day. Below, we have detailed:
[/color]Actions we are taking now and will take soon, as they are currently within UNOS’ capabilities and/or within the authority of the current OPTN contract[/size][/color]Tasks UNOS recommends are added to and funded within future OPTN contracts[/size]
Actions and recommendations
How we plan to meet the needs of the broader donation and transplant community

1.
Patient empowerment
Increase direct services and resources to patients, donors, caregivers and families
2.
Equity
Improve equity in access to the transplant healthcare system
3.
Data collection
Enable the OPTN to collect donor potential data directly for hospitals to drive improvement in OPOs, diversify donor pool
4.
Transparency
Increase transparency in OPO, hospital and system performance by making more comparative performance data available publicly
5.
Transportation
Reduce risk of organ delay, damage or loss in transport
6.
IT improvement
Maintain a safe, modern and reliable systems and infrastructure
7.
Oversight
Enhance oversight and increase transparency of peer review process
8.
Governance
Make the OPTN an organization independent of the OPTN contractor

ALL STAKEHOLDERS, INCLUDING UNOS, SHARE A COMMON MISSION:
Get as many usable transplant organs as possible to patients who need them, fairly, equitably and efficiently.

All parts of the national system must be held accountable for making sure that this happens. The OPTN contractor must provide the highest level of service to patients and the greatest level of transparency to the public who has charged it with this lifesaving work.

“We can do better, we must do better, and we will do better.”
Maureen McBride, Ph.D.
UNOS Interim CEO
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