In this episode, Kent Bresler sits down with LJ Dong, a remarkable individual who shares her unique journey of overcoming Nutcracker Syndrome and becoming a kidney donor. LJ talks about surviving multiple surgeries on her spine and abdomen and how a diagnosis of  Nutcracker Syndrome has changed her life. Nutcracker Syndrome is a compression of the renal vein causing, pain and potential damage to the kidney. Corrective surgery was unsuccessful. This inspiring conversation sheds light on the complexities of kidney health and the power of resilience and generosity.

Stay up to date with LJ Dong at https://ljthemedium.com/

For more information on Kidney Solutions and to join their supportive community, visit https://kidneysolutions.org/

Host: Kent Bresler
Producer: Jason Nunez

Remember to keep breathing, and don’t miss the next amazing episodes of Kent’s Kidney Stories!

Tom And FSGS
In 1997, Tom was diagnosed with FSGS The first hint of ESRD came from a routine annual physical.  Tom managed to avoid dialysis for the next 16 years before his first of 2 preemptive kidney transplants by eating a sensible kidney friendly diet. (FSGS)  In 2011, he was put on the kidney transplant list and after 2.5 years he was transplanted. He did face many obstacles to transplant including 6 calls as an alternate before getting transplanted,  including one admission and discharge became the donor kidney was not “ideal.”

Tom’s Kidney Transplant
On November 17th,  2013, he received his first kidney transplant at Atrium Health in North Carolina.  He faced many challenges after his transplant including proactive testing, reactive procedures and medication adjustments.

First Kidney Transplant Failed
This first kidney transplant lasted 7 years, as the kidney slowly lost function over time due to  Transplant Glomerulopathy. Once his GET hit 20%, he was referred back to the transplant center for an evaluation for a 2d kidney transplant.

On The Inactive List
In March of 2000, he was once again approved for the transplant list, but he was placed on inactive status due to pulmonary hypertension. His doctors suggested dialysis to remove the excess fluid causing the high blood pressure in his heart and arteries in order to get on the active list,  but Tom refused.  With a healthier diet,  he lost 20 pounds, alleviating the PH, and placing him after retesting on the active,  ready to be transplanted list.

Back On The Active List, Tom Gets THE CALL!
After 6 months,  he got THE CALL in September of 2020. Tom accepted a high risk Hepatitis C antibody kidney,  because Hep C is now curable.  To date he has had no signs of Hep C.  He had his 2d preemptive kidney transplant on September 17th,  2020.

Post-Transplant Challenges
Tom has faced some challenges since his 2nd kidney transplant. His labs showed signs of kidney rejection in November of 2000 and at the same time they showed the presence of the BK Virus. It is changing because treatment for rejection requires you are highly immunosuppressive while treatment for the BK Virus requires you not to be immunosuppressive at all so the body can fight it off. (BK Virus)

After 8 infusions of Thymoglobulin and Solu-Medrol Steroid,  the rejection episode seems to be over. 50+ Infusions of Cidofovir and 12 infusions of Privigen in IVIg from,  a human blood product containing antibody,  Tom may have beaten the BK Virus as well.  He has also suffered from a dropped foot.

Tom The Advocate
Tom has also been a very active kidney advocate,  his activities are listed below He is particularly known for his comprehensive advice to Kidney Transplant List Candidates.

Advice For Kidney Transplant List Candidates

• Always present your best self. Providers are always watching and evaluating.
• Maintain a positive attitude. Attend to any emotional issues. Join a Support Group.
• Be thankful. Remember to appreciate and recognize your Healthcare Team for their care.
• Advocate for yourself. Ask questions.
• Own your disease. Educate yourself about it from reliable sources.
• Be completely compliant with all instructions and Doctors’ orders.
• Maintain your best overall general health.
• Work on improving any health issues that are sub par. Exercise.
• Follow a kidney-friendly healthy diet.
• Take your medications on time and never miss a dose.
• Operate on “Lombardi Time”. “If you’re not early, you’re late.”
• If you know you will need procedures don’t wait to be told. Get your colonoscopy, get your female exam, get dental clearance.
• Make all necessary evaluation appointments as soon as possible. If it means being inconvenienced or driving to a less convenient location; so be it. The goal is to shorten the process as much as possible, get listed, and begin accruing waiting time.
• Don’t take no for an answer. If you are initially declined or listed as “Inactive”, find out what you can do to resolve it.
• Make sure you have some form of insurance and/or private resources available to pay for the transplant and aftercare. (Help may be available. Ask your Transplant Center)
• Make sure you have a caregiver to attend appointments and assist you during recovery.
• Make sure you have adequate transportation.

Thomas B. Ottmann – Avocacy Activities
Kidney Disease Awareness and Organ Donation Advocacy

• Carolinas Medical Center Kidney Disease Support Group: Member 2011 to Present
• Save A Life Group: Organ Donation Outreach Advocate: 2014 to Present
• LifeShare of the Carolinas: Ambassador & Organ Donation Advocate: 2015 to Present
• National Kidney Foundation: Organ Donation Advocate, Peer Mentor: 2011 to Present
• Carolinas Medical Center, Transplant Center: Peer Speaker at Kidney Transplantation Group Training Sessions:
2015 to Present
• Carolinas Medical Center, Transplant Center Patient Advisory Council for Transplants (PACT):
Kidney Representative and Chairman, 2 Year Term  2015-2016
• Carolinas Medical Center, Transplant Symposium for Kidney Disease Professionals: Patient Guest Speaker, 2016, 2017 & 2018
• LifeShare Carolinas, Flag Raising Ceremony
at Artium Health Pineville Medical Center:  Patient Guest Speaker, April 2019
• Transplant Talk South Carolina Support Group:  Patient Speaker, May 2019

Conclusion
Tom has had some difficult issues to deal with in his life, FSGS,  2 Kidney Transplants and having a kidney rejection at the same time as dealing with the BK Virus.  He has overcome all obstacles and yet continues to raise awareness of kidney disease.  This is a great kidney patient.

Gwen’s Journey Begins with Hodgkin’s
Gwen ‘s journey began back in 2002 when she was diagnosed with Hodgkin’s Lymphoma at the age of 21. She was successfully treated with radiation therapy, sending her cancer into remission a year after her diagnosis.

Issues With Her Heart
This was just the start of a long list of health issues for Gwen.  Five years after the radiation for cancer,  she learned that same radiation had scarred her heart.

“After a two-week hospital stay with double lung pneumonia, I was diagnosed with congestive heart failure due to mitral valve prolapse,”Gwen said, “I managed to keep my heart problems in check over the next five years by maintaining a healthy diet and taking my prescribed medications.”

By May of 2013, Gwen went into end-stage heart failure. She felt very ill and was taken to the Advocate Christ Medical Center in Oak Lawn, where she had numerous surgeries,  blood transfusions, eventually receiving both a left ventricular assist device (LVAD) and a temporary external right ventricular assist device (RVAD).  After being sedated for 8 days she was told she would need a new heart and had been placed on the heart transplant waiting list.

Gwen’s Heart Transplant
After a two month hospital stay and three months waiting at home, she received the Heart Call in October of 2013 that a donor heart had been found.  The heart transplant surgery was successfully done at the Advocate-Aurora Heart Institute at Christ Medical Center in Oak Lawn, Illinois.

Gwen’s Kidneys Failed
Gwen’s health issues did not end there.  During that 3 months stay in 2019, her body endured a lot of trauma and the immunosuppressive medications she took caused her kidneys to fail in March of 2019. After 3 rounds of pneumonia that year & while undergoing treatment, she suffered an Acute Kidney Injury.  Without warning she was placed on dialysis.   She has currently been on dialysis for 3 years.

Gwen Is Seeking a Live Kidney Donor
She is currently listed for a kidney transplant at Advocate Christ Medical Center’s (Oak Lawn, IL) kidney transplant office at 708-684-7100, tell them you’d like to schedule an appointment for a donor talk for Gwendolyn Westlund.  Her post that you can share is referred to in the comments.  She is actively looking for a living donor.

In Gwen’s own words, “I’m particularly looking forward to travel. My mom and brother and twin nephews live in North Carolina and I can’t visit. There are also tons of places I’d like to go. Nieces and nephews I’d like to make better memories with.”

Link to Gwen’s request for a kidney
Link to Gwen’s Transplant Center
Please share and if you can, please consider donating to this generous advocate!

Gwen’s Advocacy Work
Despite all of her health issues,  Gwen still advocates for all of us with the Gift of Hope and Vitalant Blood. She also plans to walk for various organizations including the National Kidney Foundation of Illinois and ACS Relay for Life.

Gift of Hope
Vitalant Blood
National Kidney Foundation of Illinois
ACS Relay for Life

Conclusion:
Gwen is an example for all of us concerning her ability to persevere through the most adverse of circumstances. Please share this blog so we can spread Gwen’s story and help to find her a kidney donor!

Cancer Diagnosis
In June of 2019, he was diagnosed with Malignant Melanoma Cancer and had to undergo several surgeries in order to isolate and remove the cancer. In the process of recovery,  he found himself unable to think, confused and agitated with difficulty communicating.

After his wife scratched his back,  he saw a Dermatologist, Dr Epperson,  who did a screening and determined it was Cancer. Due to HBP, he was referred to a primary care physician.  In November of 2019, Dr Hess conducted a physical examination, determining the the bp was still high. Despite medication the bp remained high,  so in February 2020 additional tests were ordered.

On Valentine’s Day,  while out to dinner with his wife, Tina, Chuck received a phone call from Dr Hess. The doctor requested he hand the phone to Tina. He told Tina to take Chuck to the nearest hospital to be checked in.

Kidney Issues
At Waccamaw Community Hospital several tests and a kidney biopsy was performed. His condition continued to deteriorate to the point where he had to sell his business and move in with his mother-in-law.  Once in Florida,  he saw a Nephrologist,  who had some blood tests performed. This led to an admission into Mease Countryside hospital where a heart catheter was installed and Chuck was placed on dialysis. The diagnosis was Amyloidsis.  A fistula was later placed in his left arm.  Charles has had many complications since his kidneys failed. Charles has been on dialysis the last 2 years.  He also has suffered from brain fog.  Brain Fog and Kidney Disease Article 1
Brain Fog and Kidney Disease Article 2

Chuck is Currently Seeking A Kidney Donor.  Chuck is currently seeking a Kidney Transplant. Should you wish to donate your kidney to him please refer to Charles Richard Pecoraro, my Transplantation Coordinator in Nurse Stephanie at 904-956-8782(Mayo Clinic, Jacksonville, FL) You might not be an exact match for him but through the “Paired Match” program he could still get a kidney from the National Database and yours would save another person.

If you are healthy and between 18-65 years old please start the process by completing the on line health questionnaire to see if you qualify for the program.  Check Here

Conclusion
Charles Pecoraro has shown great patience in overcoming some very difficult obstacles.  Please share this blog to help him find his match.

Ben is an art historian and writer. He has worked as an art history lecturer and educator at a wide variety of institutions, including the Museum of Modern Art and the Solomon R. Guggenheim Museum, New York, and Tate and The National Gallery, London. He is author of a number of books on art, for both children and adult audiences. His most recent book is “How To Enjoy Art: A Guide for Everyone.”

Jasper is a British art historian and curator. From 1999–2005, Sharp worked at the Peggy Guggenheim Collection, Venice, and has lived in Vienna since 2006. He is Curator for Modern and Contemporary Art at the Kunsthistorisches Museum, for whom he is currently preparing exhibition projects with artists including Ed Ruscha, Lucian Freud, Richard Wright and Joseph Cornell.

Jasper Sharp is an advisor to the Outset Contemporary Art Fund, curator of the talks program at Frieze Masters, London, and a member of the advisory board of the Sammlung Lenikus which provides studio residencies in Vienna for Austrian and international artists.

Ben and Jasper met New Years Day, 2002 in Venice, Italy, where Jasper was working & Ben was doing an internship at the Peggy Guggenheim Museum. They became roommates and friends. They have been great friends and collaborators ever since.

The Beginning of Jasper’s Kidney Problems
In 2013, Jasper first received notice that his kidney were failing and at sometime in the near future,  he would need a kidney transplant. The goal at that time was to try for a preemptive kidney transplant and to avoid dialysis.  His doctor estimated that it would be 1-7 years before he would need a transplant. She recommended a living donor.  Jasper’s family was ruled out as his condition, Glomerulonephritis was hereditary and may have been present on both sides of his family.  Friends became the next group to consider as potential donors.

Rallying Friends As Possible Donors For Jasper
In 2015, Ben received a phone call in London from Alex Trewby, an old friend of Jasper’s. Alex tells Ben that Jasper is very ill and needs people to test for him to see if they could donate a kidney to Jasper. Jasper will need a kidney transplant sometime in the future. Would you consider being a donor for Jasper. Ben readily agreed to consider it.

And Then There Was One, Ben!
There was a group of people that Alex had phone and gradually one by one dropped off or were disqualified as donors. All except Ben. He became the only potential living donor left. From 2015 until 2021, Ben was steadfast in his determination to help Jasper. Jasper’s blood type is a B+

Ben Was Persistent and Committed To Donating To Jasper
Between 2015 and the Summer of 2021, Ben would have to come from London to Vienna, a distance of approximately 767 miles by air, a 2hr plus flight for tests, scans, bp  monitoring and x-rays. Ben had to make this journey 6-8xs,  at least once a year to update his medical condition.

Delay to Transplant #1 Due to COVID-19
Around 2019, it became clear that the transplant team wanted to go forward with the kidney transplant,  but about this time the COVID-19 virus became prominent,  causing delays in kidney transplants worldwide. Jasper’s doctors were aiming for April 2020, but the operation was pushed to the middle of August 2020.

The transplant group wanted Ben to update his cross-match study, as well as multiple other tests,   to make sure his kidney was still compatible for Jasper.  The virus restrictions made travel difficult. After Ben’s arrival,  all test were updated and then the men awaited the results.

Delay # 2 Jasper’s Intestines Rupture
About 48 hours before Jasper’s kidney transplant was to take place,  his intestines rupture in the middle of the night causing a postponement of his transplant surgery.  This did result in emergency surgery. This resulted in a 3 month delay.

Delay #3 Jasper’s Surgery
In December of 2020, Jasper needed a 2d operation on his intestines where they removed a section due to repeated infections.  This resulted in another delay.

Delay # 4 Jasper Starts Dialysis
In February of 2021, Jasper had to go on dialysis.  Jasper did 4 months of dialysis,  3 evenings a week. 3 evenings a week,  In Center, with a catheter. Despite the delays, Ben remained determined to donate.

Delay #5 First Transplant Attempt Doesn’t Go Forward
The transplant date was reset for June 4th,  2021.  Ben and Jasper shared a room in the hospital and were prepared to do the transplant that day. Hospital Medical University of Vienna. Ben was taken to the operating room,  but returned 45 minutes later.  Ben doesn’t understand German, but he knew something was wrong.  2 of the transplant teams had worked through the night on a complicated case, a new team could not be assembled,  so they cancelled Jasper’s kidney transplant for that day. This resulted in another 4 day delay.

Jasper’s Kidney Transplant Was Finally Successful!
June the 9th they went back to the hospital to try it again.  After repeating the pre-transplant preparations again,  Jasper’s Kidney Transplant finally was successfully completed!  Jasper has done well post-transplant. Ben had his kidney removed by a robot called the DaVinci Machine!

Conclusion
Ben and Jasper remain great friends and collaborators to this day.   As Jasper put it, Ben and his wife in their steadfast desire to get him transplanted were, “extraordinary!” “Short of laying down your life for somebody, it is the most extraordinary thing you can do in your lifetime!”  We agree, this was the greatest Kidney Story Ever!

References
Kent’s Kidney Stories,  Episode 78, Ben Street and Jasper Sharp,  Ice Cream,  Schnitzel and the Gift of Life

by Jim Meyers

Every once in a while, you run across a great kidney transplant story that is so good, you just have to share it. But the Kidney Story you’re about to read about involves not one, not two, not three but at least four kidney transplants with the possibility of more!

Shannon Mulroy has a young daughter, Julia who, at the age of 15, was living an idyllic life in suburban New York, going to high school, playing soccer and lacrosse and hanging out with friends. Suddenly, her eyes and legs began to swell and Julia was not feeling well.

After extensive testing and workup at New York-Presbyterian/Columbia and a biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease that attacks the kidney’ s filters causing permanent damage. Despite everyone’s best efforts, including her remarkable family and notable physicians, Julia ‘s kidneys failed. She was put on Hemo dialysis as a bridge to a kidney transplant.

That when Shannon, who calls herself the MOMster, kicked into overdrive. She took steps to help her daughter find a kidney donor. Shannon was initially ruled out as a direct donor to Julia because of possible genetic mutations, someone outside of the family would have to donate. Shannon reached out on social media and to her friends with a heartbreaking letter describing her daughter’s situation. A donor was found through Julia’s twin brother’s baseball team at St Anthony’s High School in Huntington, Long Island.

A baseball mom, Lisa Calla, who is also a lawyer, donated to Julia on June 27th, 2019 at New York-Presbyterian. This so inspired Lisa’s husband Guy, that he made an indirect, anonymous kidney donation. Later, Shannon herself through paired exchange, donated a kidney in return for a voucher in case Julia needs a kidney transplant again in the future. Shannon’ s husband is set to do the same thing in the near future.

Since that time Shannon has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend, Kent Bressler.

She, Lisa and Julia are also award winners!

I have been a kidney patient for over 41 years and an active kidney advocate for a decade. This is one of the most inspiring Kidney Stories I have ever encountered! Shannon Mulroy is a true kidney hero. I admire her so much. I think you will too.

Blindsided

Shannon is a happily married woman living in Long Island with her husband and 2 twin children. Julia, one of the twins, at the age of 15 was a happy, well-adjusted girl, who from all external appearances was healthy and normal. Suddenly, and without warning, her eyes and legs began to swell. Shannon took the normal steps to help her daughter, giving her Benadryl and taking her to the doctor. Nothing seemed to help

After extensive testing and workup at New York-Presbyterian/Columbia under the close supervision of pediatric nephrologist, Dr. Namrata Jain and Dr. Andrew Bomback, that included a kidney biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease than attacks the kidney’s filtering system, causing permanent, irreparable damage. There is no cure for FSGS and the course of treatment only works marginally at best. The best possible result for young Julia was a kidney transplant, that would take time and is no easy feat to achieve. Her Mother has told us that she and her family were totally “blindsided” by this diagnosis

Despite everyone’s best efforts, including her remarkable family and notable physicians, Julia’s kidneys failed and she was put on dialysis as a bridge to a kidney transplant. She was no longer a normal high school student, staying home, missing her prom and graduation.

Mom Can’t Donate to Her Daughter

Shannon is not the type to sit still when a family member is in crisis. Just the opposite, for Shannon, no stone would be unturned in an effort to save her daughter. Initially, Shannon offered to directly donate a kidney to Julia. The doctors turned her down. Shannon was ruled out as a direct donor to Julia due to possible genetic mutations, even after genetic testing. The most difficult way, the only way for young Julia to find her kidney match would have to come from a stranger, outside of the family. To say that the situation was frightening and desperate is an understatement.

The MOMster Goes to Work

A lesser person under these circumstances may have given up and let the fates take their course. Shannon Mulroy is not such a person. Her character is composed as a fighter, and Mom came out swinging. Shannon reached out on social media with a heartfelt letter describing Julia’s situation. She is normally a very private person, particularly when it comes to family matters. Not this time, she would speak to anyone who would listen, trying to find a donor. Anything to save Julia.

A Donor is Miraculously Found

Shannon’s efforts to reach outside of her comfort zone finally paid off. A passing conversation with another baseball mom from her son TJ’s team at St. Anthony’s High School led to a donor!

A Kidney Transplant for Julia

On June 27th, 2019 at New York Presbyterian, Baseball Mom, Lisa Calla, who is also a respected attorney donated to Julia Mulroy, saving her life. Julia now leads the life of a happy, independent college student because of Lisa’s gift.

This so inspired Lisa’s husband Guy, that he later make an indirect anonymous kidney donation.

Unfortunately, the FSGS came back an attacker the transplanted kidney. Julia has never been in full remission and continues to battle the disease

Insuring Julia’s Kidney Future

As many of you know, the kidney life of a pediatric kidney transplant patient is unlike most of our kidney lives. While those of us who are diagnosed later in life hope that one kidney transplant will last us a lifetime. A pediatric kidney patient does not have this luxury. Frequently, their parents or caretakers are told up front by their nephrologists or kidney transplant surgeons that the child will need multiple kidney transplants over the course of their lives

“In general, the estimated half-life for transplanted kidneys in children is 12–15 years, therefore children with ESRD often require more than one kidney transplant in their lifetime.”

Long-term Outcomes of Kidney Transplantation in Children, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251502/#S5title

As a responsible parent, how do you ensure your child’s kidney future, even after you are gone? Shannon and her husband found a way. Through paired donation (a donor swap), on August 12th, 2021, Shannon was able to donate a kidney to a complete stranger in return for a voucher for her daughter. What this means is that because of Shannon’ s charitable act, if Julia should ever need another kidney transplant in her lifetime, with the voucher, she would be moved to the top of the Kidney Transplant List.

• Voucher Program
• Family Voucher Donation 
• Innovative Kidney Donor ‘Voucher’ System Is Saving Lives 

Shannon’s husband will do the same thing in the near future to ensure his little girl’s kidney future.

Shannon The Kidney Advocate Gives Back

Many times, once a family member’s objectives are achieved on behalf of their loved ones, they quickly disappear and you never hear from them again. Shannon Mulroy is so grateful for her daughter’s gift, she has decided to honor it by giving back as a tireless kidney advocate. She has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend, Kent Bressler. Helping others to receive kidney transplant, including preemptive kidney transplants (transplant before dialysis) have joyfully become her obsession.

In Shannon’s Own Words

Some things I’m involved with:

• Volunteer with LiveOnNY
• Hold events at various places to register and educate people as to the importance and need for organ donors.
• Pre pandemic I would go to hospitals with one of their specialist to go on rounds with docs and nurses sharing our story
• Speak at universities for example to spoke to 600 resident med students sharing my story
• Volunteer with NephCure
• Volunteer with New York State Community Leader for support and patient engagement
• Host events to spread awareness for those affected by rare proteins spilling diseases
• Mentor and support patients and caregivers to help navigate this terrible disease
• Host a monthly support group via zoom for dialysis and transplant patients and caregivers
• Patient and caregiver advisory board for Goldfinch (If you scroll down, you can see me and Kent and this is where we met)  Guided by Amanda Grandinetti we assist ny providing their doctors, scientists, and researchers real actual patient and caregiver‘s point of view.   We have helped designed the Halo Survey. this was the first comprehensive patient perspective survey of its kind in the kidney disease space. They plan to use the survey’s findings to educate researchers, clinicians, and other stakeholders about kidney disease patients’ real-world experiences with treatment options.
• Part of NPACT – NEPTUNE Patient Advisory Council for Therapies.  NPACT is a participant advisory panel consisting of patients and parents of children with nephrotic syndrome.  We provide feedback on research study design, study materials, and to help develop study-specific patient reported outcomes.
• When giving the opportunity I speak to their doctors, researchers, and scientists from a caregiver’s point of view. This was one of my short talks with 95 of them:   ShannonsStory.mp4
• Patient/caregiver advisory board
• CureGN Study by providing insight from a caregiver‘s point of view to help with the study. My daughter is also a participant in the study.
• Living donor coordinator for Kidney Solutions – A Network of Transplant Experience. This is a new position and I will be developing this program into something spectacular! I work with the founder Kent Bressler to help support, mentor, and guide potential living donors.  I work to try to connect potential donors with recipients

Here are a few things I did:

• TV interview 10/2020
• Radio show 9/2020
• Newspaper article a few days post transplant. There was an article and a video they did. Typically if a thing pops up to subscribe you just X out and open

An article that New York Presbyterian Hospital runs throughout their entire system

Conclusion
Shannon Mulroy’s Kidney Story is inspirational. During the Broadcast, she disclosed that at least 2 more people were moved to donate a kidney because of her story. I am very proud to call her my friend. Shannon herself says it best, “I will always give everything but up. We need to find a cure, we deserve to find a cure…we will NEVER give up.” Gotta love a Mom who never gives up working for all of us kidney patients.

by Jim Meyers

This was a terrific, far-ranging interview with one of the more interesting kidney advocates from the DC, Maryland and Virginia (DMV) areas.

Austin Lee is a two-time kidney transplant recipient, who was born with a rare kidney disease, posterior urethral valve (PUV) and become one of the most active and influential kidney advocates in America.

He received his first kidney transplant at the age of 4 from a live donation made by his Mom in July of 1993, that lasted 14 years until late 2007. He had many challenges with kidney disease as a child.

He then did peritoneal dialysis at home until May of 2010 when by way of a paired exchange, he received a second kidney from a living donor on June 8, 2010.

After that point in time in Austin’s own words, “Since I received the gift of life for the second time, I’ve made it my purpose to give back to my community. I’m now a patient care volunteer at Children’s National where I have committed over 500 hours of my time volunteering with pediatric patients. I also serve as a new Patient Family Advisory Council (PFAC) member, and I am committed to improving the overall care and experiences for other patients and families of the hospital. Children’s National honored me with the Volunteer Excellence Award in 2014, and I continue to be a voice for kidney patients in my local community and worldwide. I’ve also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and I was chosen for the Working 4 The Community Award during Black History Month in 2017 too.”

Austin has recently been invited to the Kidney Health Initiative Patient and Family Partnership Council.

Currently, he is pursuing a career in Early Childhood and in the process of becoming a Child Life Specialist to help other pediatric kidney patients experiencing battles similar to his.

He is a member of the Transplant Quarter Century Club, for transplant recipients who have lived with their transplanted kidneys 25 years or more.

To conclude in Austin’s own words: “I want to continue to mentor young pediatric patients on the importance of taking care of their transplanted kidneys so that they may be able to live out their life dreams and goals.”

Kidney Background From Birth to Age 4

Austin was not supposed to be here. While still in the womb, during an ultrasound, they discovered a dark mass in baby Austin’s bladder, an accumulation of fluid.

They told Austin’s Mother that her baby suffered from Posterior Urethral Valve (PUV), or obstructive membranes that develope in the urethral (the tube that drains urine from the bladder. The valve can obstruct or block the outflow of urine the the urethral, causing the bladder, ureters and kidneys to become progressively dilated, leading to possible damage or eventual death. https://www.chop.edu/conditions-diseases/posterior-urethral-valves-puv.

As Austin’s Dad was in the Service and stationed in Germany, the military physician advised Mrs Lee to abort the fetus. She refused.

While still in his Mom, they went in through her bladder and into Baby Austin to remove fluid. After Austin was born, the cut holes in his back to drain the urine from his body. He was immediately placed on peritoneal dialysis after his birth. He became the family project to help keep Austin alive. Multiple challenges and hospitalizations characterized Austin’s first four years of existence.

First Kidney Transplant

Austin’s Father was in the process of being transferred from the base in Germany to one in Washington, D.C. Austin’s Mom had an opportunity to visit with a physician in DC concerning Austin, who immediately recommended a kidney transplant. Mom was a perfect match for Austin. Sacrifices again had to be made by Mrs Lee, who had to lose weight to qualify for her son’s transplant.

At the tender age of 4 years old in 1993, Mrs Lee gave Austin the gift of life in the form of a kidney transplant. This was the first time in WDC that an Afro-American Adult had a kidney removed in one hospital, , and move to Children’s National Medical Center in Washington DC. Austin also had both of his native kidneys removed at the same time. This was a painful procedure as laparoscopic surgery was not available at this time.

Although a kidney transplant is not a cute for kidney disease, and Austin would still have challenges in his life, the quality of his life was vastly improved.

Rejection

Unfortunately, after 14 years in 2007, Austin’s transplanted kidney went into rejection. Austin was in high school at the time and the rejection came as a sudden and unexpected shock.

Back on Peritoneal Dialysis

Initially, Austin had to undergo emergency hemo dialysis, before returning to PD after his rejection. He remained on peritoneal dialysis for a period of 3 years. Again, there were many challenges for young Austin. During this time, Austin elected to educate himself about kidney transplants, hoping and praying for second chance at life.

Second Kidney Transplant

On June 8th of 2010, he got his second chance at a living donor kidney transplant. As a result of a paired exchange kidney swap, he was able to receive a kidney from Stella Christian, that continues to function well to this very day.

Commitment to Kidney Advocacy With Emphasis on Pediatric Kidney Patients

After his second kidney transplant, Austin committed himself to giving back to the community, including the Kidney Community with a definite emphasis on Pediatric Kidney Patients, but also to the DMV General Community as well.

He made a 500 hour commitment to Children’s National, volunteering with pediatric kidney patients. He teaches pre-schoolers. He serves on the Patient Family Advisory Council (PFAC), committed to improving the overall care for patients and families of the hospital.

He is currently pursuing a career in Early Childhood to become a Child Life Specialist, helping other pediatric kidney patients to overcome obstacles similar to his experiences.

Kidney Advocacy Experiences

By far and away Austin Lee is one of the most active Kidney Advocates in the United States. Here are just a few examples:

• He recently published his story for UNOS News entitled, Austin Lee: Giving Back and Helping Others

• He is a member of the Kidney Advocacy Committee for the National Kidney Foundation and he made a video for the NKF & Donate Life America for National Minority Donor Awareness Month.

• He is an Ambassador for the American Association of Kidney Patients, a Member of their Speaker’s Bureau and a Peer Mentor to advise other kidney patients.

• Acts as an Organ Donation Advocate for the Washington Regional Transplant Community.

• Has participated in the Transplant Games of America.

• He is a Wish Granter for the Make-A-Wish Mid-Atlantic Foundation after having a wish granted as a child himself.

• He is a Patient Care Transplant Volunteer for Children’s National Medical Center in WDC in the Heart/Transplant Unit and is currently assisting with a Christmas Gift Drive.  Austin has now done over 500 hours of Service at Children’s National!;

• He has recently done a webinar for CARE DX.

• He is a member of the Transplant Quarter Century Club, an Organization of Organ Transplant Recipients Whose Transplanted Organ Has Survived and Functioned for Twenty-Five Years or More.

Community Volunteer

Austin’s work in the WDC Community is also notable. He is a volunteer for Senior Dogs, Martha’s Table, where 320+ bags of groceries were given away for the needy, and the DC Pantry.

Awards

Children’s National honored Austin with the Volunteer Excellence Award in 2014, as he continues to be a voice for kidney patients in my local community and worldwide. He has also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and was chosen for the Working 4 The Community Award during Black History Month in 2017.

Future Work

In the near future, Austin is doing a documentary concerning Pediatric Kidney Disease and his Transplant Journey as a Pediatric Nephrology Patient of Children’s National.

Conclusion

Austin Lee is a terrific kidney advocate and a become for the DMV region. We will continue to follow his advocacy with interest.

Jim Meyers

After all the testing my son and I went through, it was determined I was the better match. I was nervously excited as I had never had a surgery procedure in my life! After undergoing a final blood test in March, it was now determined I was not a match as Wendy’s immunity had changed. The first option was start dialysis and wait for a deceased kidney match. I asked my kidney coordinator how long will Wendy have to wait for a transplant? She told me it could take years. Feeling frustrated and a little angry to be honest I asked if there were any alternatives. She explained to me the Paired Kidney Exchange program. I had never heard of this before. I asked how it worked? My Coordinator explained I must be willing to donate a kidney to someone anonymous. We then would need to find a living donor for Wendy as she would be the most difficult to match. Upon finding her a match the others involved would donate to someone in need. How long would it take I asked? My Coordinator said it could be 3 months or more than a year to find Wendy a match. I liked the odds better.

Fast forward to the first week in May 2019. Although Wendy has her port in to begin dialysis, she has not had to do it yet. I received a call from my Coordinator that week with the news they had found a match for Wendy. I was so excited to share the news with everyone. The transplant surgery was scheduled for May 15^th. I would go in first to have a kidney removed. I did find out my kidney was flown out to Washington State. How ironic as my family lived there for 5 years. Wendy went into surgery after I was out. We found out Wendy’s kidney was flown in on a private jet thanks to the donor. How awesome.

The surgeries went extremely well. The recovery for me was about 2 weeks and for Wendy about 8 weeks. There were 5 donors in our chain that saved lives in those 24 hours. Simply amazing.

We would like to thank all involved taking care of us at UW Madison hospital in Wisconsin. Those people are incredible human beings. To help spread the word of live organ donation, I have started a Facebook page called Kidney Kindness Care. This page helps spread the word of donation and hopefully helps others to understand the process.

That’s our story, we are both doing well and enjoying my wife’s second chance of normality! #DonateLife.

Scott Wilcox