Dr. Nicole M. Ali is an assistant professor of medicine at the New York University School of Medicine, Medical Director of kidney and pancreas transplantation, and Director of Outreach. Following completion of her undergraduate degree at Brown University she joined the Americorp Program, Teach for America. She earned her Medical degree from SUNY – Stony Brook. She is board certified in Internal Medicine and Nephrology and is an AST/ASN certified transplant nephrologist, trained at Columbia University Medical Center, NY.
She has held positions as the Chief of Transplantation at Hackensack University Medical Center for the kidney and pancreas transplant programs and the Medical Director of the kidney transplant program at North Shore University Hospital. She has extensive experience working with programs that experienced outcome issues including system improvement agreements and structuring transplant quality programs. She has published many articles in peer reviewed journals and presents lectures locally and internationally. Her current areas of research include increasing access to transplantation, improving organ utilization and novel desensitization strategies.
Michael J. Goldstein MD FACS Dr. Goldstein is Director of the Division of Organ Transplantation at Hackensack University Medical Center and Hackensack Meridian Health. He is Professor of Surgery at Hackensack Meridian School of Medicine and the OPTN Surgical Program Director for adult and pediatric kidney transplantation, and pancreas transplantation. Prior to joining Hackensack Meridian Health, he served as Chief of Kidney Transplantation at the University of Miami Miller School of Medicine and the Executive Director, Life Alliance Organ Recovery Agency. With surgical, academic, and executive experience in both organ donation and transplantation, Dr. Goldstein focuses his career on improving patient access to organ transplantation with the goal of maximizing the utilization of living and deceased donor organs for transplantation. Dr. Goldstein is an advisor for the OPTN Expeditious Task Force, faculty member of the ESRD Treatment Choices Learning Collaborative, and active participant of the OPTN Transplant Center Growth Collaborative. In prior years, he served nationally with HRSA to improve transplant center quality on the Transplant Center Task Force and Co-Chaired the National Learning Congress for the Organ Donation and Transplantation Community of Practice. He also served as Vice-Chair of the UNOS Organ Availability Committee and the Medical Directors Council of the Association of Organ Procurement Organizations. Board-certified by the American Board of Surgery, Dr. Goldstein is a Fellow of the American College of Surgeons, member of the American Society for Transplant Surgeons, and American Society for Transplantation. He earned his Bachelor of Arts degree in neurobiology at the University of Pennsylvania and his Doctor of Medicine degree at Temple University School of Medicine. He completed his residency in General Surgery at New York Presbyterian Hospital-Columbia University Medical Center and transplantation fellowship at the Center for Liver Disease and Transplantation at New York Presbyterian Hospital-Columbia University Medical Center.
Dr. Newell came to Emory from the University of Chicago, where he had been serving as director of kidney and pancreas transplantation. Prior to joining the faculty of UChicago, he earned his PhD in immunology and completed an abdominal transplantation fellowship at the institution. He received his medical degree from the University of Michigan and completed his general surgery residency at Loyola Medical Center in Illinois.
Dr. Newell served as director of Emory’s living donor kidney transplant program from 2003-2014 and established Emory’s unrelated paired donor kidney exchange program in 2007. His various research pursuits have included optimizing belatacept as an immunosuppressant in renal transplantation, identification and mechanistic investigations of tolerant kidney transplant patients, and the development of transplant strategies uniquely responsive to the needs of children
Dr. Newell served as president of the American Society of Transplantation from 2014-2015, was an at large member of the OPTN/UNOS Vascularized Composite Allograft Transplant (VCA) Committee from 2013-2016, and chaired the Mechanistic Studies Subcommittee of the Clinical Trials in Organ Transplantation program of the NIH.
Dr. Katz has served as Chief Medical Officer of Eledon since November 2023. He joined Eledon Pharmaceuticals from eGenesis where he served as Chief Medical Officer. Prior to eGenesis, Dr. Katz was Vice President of Clinical Development first at Viela Bio and then at Horizon Therapeutics following its acquisition of Vielo Bio. At Horizon and Viela Bio, Dr. Katz led the clinical development of inebilizumab in multiple autoimmune indications and oversaw the regulatory submission and approval of UPLIZNA®(inebilizumab). Prior to Viela Bio, Dr. Katz served as Senior Director of Clinical Development at MedImmune Inc. and Senior Director of Transplantation with the Medicine Development Group at Pfizer. Before joining industry, Dr. Katz spent two decades as a transplant surgeon. He was director of the abdominal transplantation division at Integris Baptist Medical Center in Oklahoma City, and an associate professor of surgery and the director of the liver transplantation division at the University of Massachusetts Medical Center, Worcester, MA. Dr. Katz earned his M.D. at Hadassah Hebrew University Medical School in Jerusalem.
As chair of the Department of Surgery and director of the NYU Langone Transplant Institute, Dr. Montgomery oversees a diverse team of medical and surgical specialists who provide a wide variety of surgery and transplantation services. He is well placed to talk about the skilled, compassionate experts at the Transplant Institute not only as its director—but also as someone who received a heart transplant here.
The structure of the Transplant Institute enables us to offer the most advanced patient care in a hospital that has earned top rankings for overall patient safety and quality from Vizient, Inc., formerly the University HealthSystem Consortium.
We are focused on bone marrow, heart, kidney, liver, lung, and facial transplantation. Our transplantation services have consistently led to outstanding patient outcomes. We are poised to introduce innovative programs I’ve helped to develop that will make us unique among New York’s transplant programs.
My primary goal is to use state-of-the-art innovations and technology to eliminate barriers that may be preventing people who need transplants from getting them. I was a member of the team that developed the laparoscopic procedure for live kidney donation. This minimally invasive procedure allows for a faster recovery after kidney donation and has become the standard throughout the world.
I also developed and performed the first “domino paired donation,” which is when two or more donors and recipients are paired in a kidney swap. This is often used when a donor and recipient have incompatible tissue or blood types. By bringing together multiple pairs of donors and recipients, we can ensure that all parties receive compatible organs.
I was the lead surgeon in the first 2-way, 3-way, 4-way, 5-way, 6-way, and 8-way domino paired donations and in the first 10-way open chain donation. In 2010, I was credited in The Guinness Book of World Records with performing the most kidney transplants in one day.
I am considered the world’s authority on desensitization—the process of readying patients to receive incompatible tissue or blood type transplants—altruistic donation, antibody-mediated rejection, and kidney-paired donation. I have performed more than 1,000 kidney transplants and am often referred patients who have the most difficult and complex situations. This includes people who have had multiple transplants, are difficult to match with donors, have been on dialysis for a long time, have clotting disorders, or are at a high risk for transplant rejection.
I trained in general surgery and multi-organ transplantation at The Johns Hopkins Hospital. My research focuses on stem cell therapies and gene- and cell-based therapies in transplantation. I co-lead a clinical trial sponsored by the National Institutes of Health involving simultaneous donor bone marrow and live donor kidney transplantation. I also run multiple clinical trials for novel desensitization therapies.
I am honored to have received several awards recognizing my experience in patient care and research, including the American Society of Human Genetics’ Postdoctoral Basic Science Award, the Johns Hopkins Clinician Scientist Award, the Fujisawa Faculty Development Award from the American Society of Transplant Surgeons, the Champion of Hope Award from the National Kidney Foundation of Maryland, and the Terasaki Medical Innovation Award from the National Kidney Registry.
Recap
Lyfebulb’s patient summit, “Empowering Lives: State of Transplantation”, brought together everyone involved in the transplant journey—recipients, donors, care partners, doctors, and industry experts with the goal to improve the quality of life and outcomes for everyone. We shared stories, learned from experts, discussed challenges, and discussed solutions.
Our event on October 4, 2024 at NYU Langone Health in New York City included:
- Inspirational Talks: Experts in the field of transplantation
- Engaging Panels: Discussions on important topics from both the patient and provider perspective, such as new treatments, care management, and future innovations in transplantation
- Networking Opportunities: Connecting with others who understand your journey
- Contribute to the Future: Offering your perspective through questions to panels and responses to a survey
- Peer-to-Peer Meet-Up: Meeting your fellow transplant peers in a closed session led by our TransplantLyfe Community managers (patients, donors and care partners only)
Takeaways
1. The Need for More and Better Matched Organs
Transplantation has huge benefits over life on dialysis. We need to take charge and educate patients on the choices they have in organ selection and matching. A much larger population does not even make the list and could benefit from transplantation.
We need to continue to examine new organ pathways (such as xenotransplantation and artificial organs) as an alternative to dialysis to expand the available organ pool.
2. Changing the Perception that One Year Survival is the (Only) Outcome of Measurement
The existing 93-98% one-year survival of the graft is a bar that is virtually impossible to beat for any new drug or care pathway.
Many of the current drug regimens are harming the transplanted organ long-term, while causing serious side effects and complications that reduce quality of life and create the need for more transplants to survive.
3. Engaging the Community to Record and Share Symptoms to Demonstrate, Clinically, Quality of Life Issues
Patient reported data will be required, ultimately, to demonstrate long-term needs and side effects.
SPEAKERS
Nicole Ali, MD
Clinical Associate Professor, Department of Medicine at NYU Grossman School of Medicine; Director, Quality, Transplant Institute at NYU Langone Transplant Institute
Russell J. Crew, MD
Assistant Professor of Medicine at NewYork-Presbyterian / Columbia University Irving Medical Center
Michael Goldstein, MD
Director of Organ Transplantation at Hackensack University Medical Center
Mark A. Hardy, MD, PhD (Hon), FACS
Director Emeritus and Founder, Renal and Islet Transplantation, and Surgeon, Abdominal Organ Transplantation and Islets at NewYork-Presbyterian Hospital/Columbia University Medical Center
Karin Hehenberger, MD, PhD
Founder & CEO at Lyfebulb
Eliezer Katz, MD, FACS
Chief Medical Officer at Eledon Pharmaceuticals
Robert Montgomery, MD, PhD
H. Leon Pachter Chair and Professor of Surgery Director at NYU Langone Transplant Institute
Kenneth Newell, MD, PhD
Chief Medical Officer at Eledon Pharmaceuticals
Anne B. Lawler, CSW, LCSW, ACSW, BCD
Assistant Professor of Medicine at NewYork-Presbyterian / Columbia University Irving Medical Center
Agenda & Video Recordings
Welcome Remarks & Introductions with Karin Hehenberger, MD, PhD, Lyfebulb and Robert Montgomery, MD, DPhil, NYU Langone Transplant Institute (Watch)
My Transplant Journey by Jeanmarie Ferguson (Watch)
How to Own the Organ Selection Process by Michael Goldstein, MD, Hackensack Meridian Health (Watch)
Optimizing The Match by Bonnie Lonze, MD, PhD, NYU Langone Transplant Institute (Watch)
Best Use of Current Therapies by David Cohen, MD, Columbia University Irving Medical Center / NewYork-Presbyterian Hospital (Watch)
Celebrities As a Vehicle to Influence Change in Healthcare by Mark Hardy, MD, Columbia University Irving Medical Center / NewYork-Presbyterian Hospital (Watch)
Fast Tracking Treatment Options: Regulatory Environment and Clinical Endpoints with Eliezer Katz, MD Eledon, Ken Newell, MD, Emory University, moderated by Karin Hehenberger, MD, PhD (Watch)
Aiming High: Less Drugs, More Organs: Tolerance by Ken Newell, MD, Emory School of Medicine (Watch)
Aiming High: Less Drugs, More Organs: Xenotransplant by Robert Montgomery, MD, DPhil, NYU Langone Transplant Institute (Watch)
Treating Patients Today by Nicole Ali, MD, NYU Langone Transplant Institute, and R.J. Crew, MD, CUIMC / NewYork-Presbyterian Hospital (Watch)
Ups and Downs in Caring for Your Transplant, Recipient Panel: LaVise McCray, Taryn Servold, Jeanmarie Ferguson, and Sam Dey moderated by Leslie Brille, Lyfebulb (Watch)
Quality of Life Panel with Anne Lawler, LCSW, Joan Kelly, RN and Jeanmarie Ferguson, moderated by Mark Hardy, MD (Watch)
Mind & Body by Alisha Hiebert, RYT, MBC, TransplantLyfe Community Manager (Watch)
Empowering Patients via Technology by Leslie Brille (Watch)
Closing Remarks by Karin Hehenberger, MD, PhD (Watch)
Thank You To Our Supporters
Eledon Pharmaceuticals is a clinical stage biotechnology company with immunology expertise that is developing therapies to protect and prevent rejection of transplanted organs, as well as to treat amyotrophic lateral sclerosis (ALS). The Company’s lead compound in development is tegoprubart, an anti-CD40L antibody with high affinity for CD40 Ligand (also called “CD154”), a well-validated biological target with broad therapeutic potential.
Memo Therapeutics AG (“MTx”) is a late-stage biotech company translating unique human immune responses into superior medicines through the development of best-in-class antibodies to treat viral infections and cancer.
We are an innovative global healthcare company, driven by one purpose: we chase the miracles of science to improve people’s lives. Our team, across the world, is dedicated to transforming the practice of medicine by working to turn the impossible into the possible. We provide potentially life-changing treatment options and life-saving vaccine protection to millions of people globally, while putting sustainability and social responsibility at the center of our ambitions.
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Lyfebulb is a patient engagement platform. Our mission is to reduce the burden of living with chronic disease through the power of the patient.
Under the leadership of Dr. Robert Montgomery, the NYU Langone Health Transplant Institute is a national leader in organ transplantation, excelling in heart, kidney, liver, and lung transplants. According to SRTR data, the institute boasts the fastest heart transplant rate in the Northeast, the top kidney program in the country, a 100% one-year liver transplant survival rate, and the highest-ranked lung transplant program in the U.S. These achievements highlight the institute’s expertise in treating complex cases.
Karin Hehenberger hosted a happiness luncheon at the Transplant Games of America 2024 and gave an excellent speech. Join TransplantLyfe.com to become a part of our close-knit transplant community.
Join us for an inspiring conversation at the Transplant Games as Karin Hehenberger sits down with Alexis Hartman. Together, they delve into the transformative power of organ transplantation, sharing personal stories and insights that highlight the profound impact on individuals and communities.
Welcome to LyfeTalks, a podcast that intimately explores the experiences of transplant recipients. Join us for raw and real discussions about getting a new organ and life afterward. Featuring a new guest each episode, this is your go-to podcast on everything transplant-related.
Alisha, a two-time liver transplant recipient, sits down with Carswell, who received a kidney transplant at 19 and is now 21. Together, they discuss the transition from pediatric to adult care in the transplant journey.
LaVise McCray, a kidney transplant recipient, sits down with Inka Nisinbaum, who underwent double lung and liver transplants in Germany in 2002. Since childhood, running has motivated her to maintain happiness and health. Inka shares how she incorporates fitness into her routine to improve her well-being.
Alisha, a two-time liver transplant recipient, sits down with Jillian Best from The Move for Life Foundation. They discuss Jillian’s achievements at the World Transplant Games and her efforts to raise awareness for organ donation.
Jeanmarie, a 19-year kidney transplant recipient, sits down with LaVise McCray to discuss how LaVise progressed from using a wheelchair to walking 8,000 steps daily. She shares her year-long journey with the support of her physical therapist, Dr. Aleksander Kowarz.
Jeanmarie was diagnosed with Lupus Nephritis at 16, eventually leading to a kidney transplant in 2006. She sits down with Emmitt Henderson III, CEO of Male Lupus Warriors, to discuss his Lupus and transplant journey, which began in 1987.
Jeanmarie, a kidney transplant recipient, sits down with Kira Banks, a Community Outreach Coordinator from the Gift of Hope Organ and Tissue Network. Kira discusses the role of a local OPO, how to write a letter to a donor family, and ways to get involved with your local organ procurement organization.
Alisha, a two-time liver transplant recipient, and Taryn, a kidney/pancreas recipient, sit down to discuss their shared transplant anniversary date. Alisha reflects on her four-year transplant journey, while Taryn shares her experiences from the past two years.
Jeanmarie, a kidney transplant recipient currently back on the waiting list, sits down with Randy Simpkins, a living donor inspired by patients on the national waiting list. Randy has made it his mission to find a way to end the wait for transplants.
Alisha, a two-time liver recipient, sits down with Danny Hiles from the Transplant Strong podcast to discuss being inspired, connecting, and bonding with other transplant recipients worldwide.
Jeanmarie, 18 years post-kidney transplant, sits down with Angelo Reyes, a professional boxing and MMA trainer and liver transplant recipient. They discuss Angelo’s transplant journey and the importance of men’s health, emphasizing the need to break the stigma around men neglecting their well-being.
TransplantLyfe Community Managers, Jeanmarie and Taryn, had the privilege of attending the Transplant Games of America in Birmingham, Alabama. They share their unique experience of meeting many transplant recipients and recount stories from some of the individuals they met: Elsa, a heart transplant recipient; Jessi, the oldest surviving double lung transplant recipient; Emily, who underwent a modified multi-visceral transplant; Swapna, who received a small intestine; Janet, a 19-year heart transplant recipient; Kim, who received a heart and lungs; and Rhoda, who received a kidney/pancreas transplant. Each of them discusses their transplant experiences.
Dr. Karin Hehenberger, a kidney/pancreas recipient and founder of TransplantLyfe and LyfeBulb, gives a presentation on health and happiness at the Transplant Games of America in Birmingham, Alabama. What makes you happy?
Alex, who previously received a kidney transplant and is now on the waiting list for a second kidney, sits down with Advanced Nurse Practitioner Denise Goodman and LaVise McCray, a former dialysis patient and current kidney transplant recipient. With 39 years of experience as a dialysis nurse, Denise joins them as they discuss the journey from the dialysis chair to transplant.
Taryn, a kidney/pancreas recipient, sits down with Kristi Ouimet, a mother of two transplant recipients. Kristi shares how she balances being the best care partner for her children while also taking care of herself.
Alisha and Jeanmarie sit down with Gabriel, a kidney and pancreas recipient as well as a psychotherapist, to discuss the importance of seeking mental health support during the transplant journey. Alisha, a two-time liver transplant recipient, and Jeanmarie, a kidney transplant recipient, share their experiences and insights on the significance of mental health care throughout their transplant journeys.
Jeanmarie, a kidney transplant recipient, and Chloe Temtchine, a singer/songwriter who has received a double lung transplant, discuss their transplant journeys. They share how they cope with tough times and highlight the importance of maintaining a hopeful outlook on the future.
Taryn, a kidney/pancreas recipient, sits down with LaVise McCray to discuss the crucial role of peer support among transplant patients. They share personal experiences and highlight how connecting with others who have undergone similar procedures can provide emotional strength, shared knowledge, and a sense of community. Through their conversation, they emphasize the positive impact that peer-to-peer support has on the overall well-being for transplant recipients.
Alisha, a two-time liver transplant recipient, sits down with Jeanmarie, a kidney transplant patient of 18 years, to discuss navigating the complex emotions of gratitude and grief throughout the transplant journey.
Alisha, a two-time liver transplant recipient, sits down with Jamie Imhof, a liver and kidney transplant recipient, to discuss goal-setting after a transplant. They explore how to establish goals for taking medications, maintaining good health, and adjusting to everyday life post-transplant.
Jeanmarie, an 18-year kidney transplant recipient, and TransplantLyfe Community Manager, engages in a conversation with Dusty Atchison, who underwent a kidney transplant at the age of 17. They explore their distinct strategies for handling doctor appointments and emphasize the significance of self-advocacy when interacting with medical professionals.
Alex Berrios, a community manager at TransplantLyfe and patient advocate, joins Mark Eisen and LaVise McCray to discuss their experiences with receiving kidney transplants. They explore the transition from dialysis to transplant and offer insights on how to effectively advocate for oneself throughout this process.
Jeanmarie and Taryn sit down for an in-depth discussion about how and when to ask other people for help during the transplant journey. Jeanmarie is 18 years post kidney transplant and Taryn is a kidney/pancreas transplant recipient, transplanted almost 2 years ago. Together they explore the complex topic of not wanting to be a potential burden to others. However, it is imperative to acknowledge instances wherein external support becomes indispensable throughout this transformative process.
According to information from DonateLife.com, over 100,000 individuals are currently awaiting a life-saving organ. In 2023, the contributions of over 23,000 donors brought renewed hope and vitality to recipients and their loved ones. In this unique episode dedicated to Donate Life month, we engage in conversations with liver, kidney, heart, and lung transplant recipients and someone waiting on dialysis, as well as a caregiver, to explore what organ donation means to each of them.
As they transitioned into the transplant world, Alisha and Taiylor discovered a newfound purpose in their experiences. Rather than allowing their pain to define them, they transformed it into a driving force for positive change. Both recognized the importance of peer support and advocacy in helping others navigate the complex transplant journey.
Jeanmarie sits down with Gabriel, a kidney/pancreas recipient and psychotherapist to discuss how to manage anxiety while waiting for a life-saving organ. Gabriel recently went through the process, waiting on the list himself for 2 years. Jeanmarie was diagnosed at 16 with Lupus. She had a kidney transplant at 24 years old. Although Jeanmarie has had 18 successful years with her living donor kidney, she is now on the wait list waiting for her second kidney. Listen to the conversation between Jeanmarie and Gabriel about the best ways to manage the rollercoaster of feelings that come with waiting on the transplant list.
Alisha sits down with LaVise to discuss how she never lost hope even when life looked dim. LaVise received a kidney transplant in March 2023. She has faced many challenges throughout her journey. In 2023 she was told she wasn’t going to live to see 2024. It’s 2024 and she is thriving! Listen to her incredible story about how she persevered through the challenges and never gave up.
Written by Lisa and Michael Hehenberger
We have both donated a kidney to our sister / daughter Karin, in the years 2023 and 2009, respectively. Having donated and successfully recovered, we’d like to share our experience as well as proposing ways to increase the number of “live donors”, willing to help other patients in need.
Background
Karin has struggled for many years with the dire consequences of Type I diabetes. She was diagnosed before her 17th birthday and her diagnosis affected our family in significant ways. Karin and Lisa were very close growing up, playing together, traveling, playing tennis, and sharing an active family life. Little sister Anna, being 11 years younger than Karin (and 8 years younger than Lisa), was perhaps less affected, but still experienced that the mood had changed at home. Suddenly, Karin was no longer the person whose sisters and parents Ulla and Michael considered “invincible”. The diagnosis also coincided with a move to Paris where the family spent four years, from 1989 to 1993. Karin graduated from high school in Paris in 1991 and moved to Stockholm to study medicine. In 1993, Lisa joined her to study Economics. Karin & Lisa lived together and successfully earned their respective degrees. Karin’s goal was to get a deep understanding of the molecular mechanisms responsible for Type I Diabetes. She completed her MD Ph.D. at Karolinska, Stockholm. While her parents and little sister had moved to California, the two older sisters lived together in Sweden for a few years until they went their separate ways due to work, study, and eventually start their own families. Lisa got a Ph.D. in Venture Philanthropy and is now a Professor at ESADE, a Spanish business school. Karin & Lisa stayed connected and visited each other at least once a year although they lived in different countries, in the United States and Spain, respectively.
Karin’s Kidney Failure
In 2009, when Karin’s kidneys stopped functioning properly and she required dialysis or a transplant, her father Michael stepped up and volunteered to donate a kidney. Lisa was pregnant with her second child and living in Spain, but came over to New York to support the family for the surgery. Being pregnant, Lisa couldn’t be a donor but told Karin that if she ever needed a kidney again, she would be a candidate for another live donation.
Father Michael’s Donation in 2009
Being 63 years old, rigorous tests were needed to qualify father Michael for his kidney donation. As two complicated parallel surgeries are required, to extract a kidney and to transplant it into the recipient’s body, it is important to minimize all risks and to make sure the donor is healthy and that the kidney is in good enough shape to survive for many years in the recipient’s body. Two highly qualified surgeons have to team up to achieve this goal. Both patients recovered quickly. In fact, less than 2 months after his donation, father Michael participated in a hike to the Himalayan foothills at the border of India and Nepal, close to Darjeeling. As an avid runner, he measured his performance before and after his surgery: The decline in speed and endurance was about 9% about one month after surgery, not serious enough to give up his plan to see four of the world’s five highest peaks! He did the hike with four friends, all highly supportive. A highlight was his lighting of a candle in a Buddhist monastery. It was a memorable spiritual experience.
Sister Lisa’s Donation in 2023
While father Michael’s sole kidney was functioning very well, Karin’s transplanted kidney had suffered from the negative side effects caused by immunosuppressant drugs that have to be taken daily to avoid organ rejection. As a consequence, Karin was in need of a second transplant, 14 years after her first. Lisa donated a kidney to her sister in April 2023. In what follows she has tried to provide as much detail as possible so that others can understand what it felt like (although each experience will be different). Donating a kidney is not easy, but it is a unique and wonderful opportunity to save someone’s life – with relatively low risks for the donor. Lisa’s bond to her big sister has grown stronger through this shared experience, but also by the fact that Karin has a part of her sister inside her body. Donating a kidney is an act of love that generates more and stronger love. That is how Lisa feels.
Pre-Screening, Tests, Planning, and Surgery (as told by Lisa)
In 2022, Karin told me that her kidney values were alarmingly poor and that she had to start preparing for a new transplant. What I had once promised was suddenly a reality. I knew her health had deteriorated over the past years but I think I was too scared to start informing myself properly about the process. I decided to come over from Barcelona (where I live) to New York in the summer of 2022 to help Karin get through a hip replacement surgery and take care of Karin’s daughter Liv. It was also a good opportunity to undergo all the screening tests to become a donor.
At this time, I was put in touch with the kidney transplant team at Columbia Presbyterian Hospital in New York City. I was assigned a coordinator who took care of booking all my appointments and informing me of the general process. Apart from a number of blood tests, urine tests, a CT-scan, EKG and X-rays I also met with a psychiatrist, a financial advisor, a social worker, my surgeon and a nephrologist. All the tests and meetings took almost a week. It was a tiring experience but it felt important to be fully informed – and of course the hospital needed all the information about me to assess my suitability as a donor and the match with my sister. My children (then 15 and 12 years old) were worried for me and I wanted to feel confident that I could provide them with all the information they needed so that I could reassure them.
The first meetings were with the coordinator, social worker, financial advisor and psychiatrist. They asked a lot of questions about my motivation for donating a kidney, informed me about the risks and wanted to understand if I was mentally stable and fit to be a donor. They highlighted the potential health problems that could result from the surgery in the short term and from complications over time, as well as financial risks if I would lose income as a consequence. They wanted to make sure that no one had pressured me into becoming a donor. I was not fully prepared for all these negative aspects and I felt quite down after these meetings. The meetings with the surgeon and the nephrologist were much more positive. They explained how being a donor of course involves risks, but that most donors live long and healthy lives. They also explained how I was an ideal donor because of my healthy lifestyle, my health condition and my age (47). By the time you reach my age most people have developed habits and routines that normally are life-lasting. Seemingly healthy younger donors might still change and become smokers, alcoholics, etc. I felt more confident about the donation after these meetings. I also spoke to my dad about his experience and to another kidney donor who had donated her kidney to a stranger. I am in awe of people who decide to donate a kidney to someone they don’t know.
I also had an interesting conversation with a Jesuit priest who I consider to be a wise man and who has counseled me before. I told him about how I worried about my children. He said two things that stayed with me and were important in the process: He said that donating a kidney may involve risks but it is also an incredible opportunity to do good, to save my sister’s life. He also said that doing this act of kindness and generosity would be a wonderful example for my children. As a parent one tries to be a role model – by donating a kidney I could demonstrate my love for my sister and this could help bring my children closer together too. I think I was already convinced to go ahead with the donation, but this conversation and the subsequent reflection really changed my attitude towards the donation from sacrifice to gratitude.
A few weeks after the tests (in September 2022) we received the green light that the donation could proceed. We were a good match and I had fulfilled the necessary screening conditions. I would need to stay in the United States for a month for the procedure as I needed to be there at least a week before for additional tests and then at least two weeks after the surgery to heal and not to risk blood clots on the plane. Karin and I discussed potential timings considering her recovery from the hip replacement and my work schedule (I am a professor at a business school) and the children’s school holidays.
In February 2023, we finally were able to plan the transplant for April 2023. I had to prepare everything at home, cancel a class I was teaching and prepare the logistics at home so that the children would be well taken care of. I am divorced with full custody and my ex-husband agreed to be responsible for the children during my absence. Unfortunately, my son had surgery on his ankle in March so when I left him, he was still recovering from that.
I arrived in New York at the beginning of April and my sister was in very poor shape. She was admitted to hospital and had started dialysis. I wondered if we had waited too long. I had some additional blood and urine tests to do during the first few days. I caught a slight cold during those first days and it turned out to be COVID! I had avoided COVID during the pandemic so it felt like very unfortunate timing. My parents also got sick and we were confined in their house for a few days. We had to postpone the surgery another week to allow me to test negative. On the positive side, my sister was getting dialysis every other day and was starting to feel stronger.
When the date of the transplant finally arrived, we were all eager to put it behind us, but also worried. The psychiatrist had told me that I needed to separate the act of donating the kidney from the outcome (that the kidney would work for my sister). I found this difficult to do. My parents drove us to the hospital early in the morning and we were all nervous in anticipation of the event. I imagine that it must have been tough for my parents to send two of their (three) daughters off to surgery at the same time. At the hospital we registered and waited in the waiting hall. I was called first and went to the pre-operatory room with my dad. The nurses prepared me by taking my vitals and asking many questions. The surgeon and the anesthesiologists also stopped by to explain the procedure and prepare me. I then went to the operating room and I don’t remember anything else. I woke up about four hours later in the recovery room. The nurse told me that the first thing I said was: “Now I only have one kidney!”. As I was waking up, Dr. Mark Hardy who had founded the Columbia Presbyterian transplant unit, came to check on me. He told me that the kidney was already working for my sister – on the operating table! I was so happy I started crying and he cried too. It was a beautiful moment.
A few hours later I was sent up to my hospital room and my parents came to see me. I was tired but happy and did not experience pain yet. The day after was the worst – I had intense pain in my left shoulder and my stomach was bloated and full of gas. I felt terrible. It helped to start walking around and when they removed my catheter after 24 hours, I was more mobile. My sister and I were able to see each other and hang out. As we both felt better, we ended up having a positive bonding experience in hospital. The hospital staff was truly remarkable. The nurse team (especially nurse Annie) was very attentive and I felt totally cared for. I must admit I was a bit scared of leaving hospital and having to manage everything on my own. There was a comfort in the hospital routines and even the controlled food. When my dad picked me up from hospital on the third day I cried in the car and couldn’t stop crying when I came back to my parents’ house. Maybe it was just the relief that it was over.
Recovery Period
The surgery was laparoscopic meaning that the incision is small (just big enough to remove the kidney) with three other small incisions for the instruments they insert. They blow up your belly with gas so that they can operate without making a bigger cut. This means that it takes a while afterwards for all the gas to go away. It helps to walk around. I understood that the procedure also causes the lungs to compress which is why I found it difficult to breathe for at least a couple of weeks after the surgery. The shoulder pain was also due to the procedure. However, the advantage is that the surgical healing is faster.
After the surgery of course the donor feels much worse than before the surgery – while the transplant patient generally feels much better than before. Karin had a lot of energy and Lisa had very little. This may sound strange but makes sense since the donor has lost a kidney while the recipient has gained one. Walking a little more each day is very helpful. It helps to have a device that tracks your steps to keep your motivation going. Later, at home, the sisters had a pleasant recovery period at Karin’s house with her daughter Liv. It felt important to share the experience and to support each other. The sisters also received support from their parents. It helped to stay closely connected with family at home and speaking to them every day. Younger sister Anna also came to visit during the recovery, along with her baby boy Freddie. Supportive messages and calls from friends were helpful.
Once back home in Barcelona Lisa felt tired but also euphoric about the experience. She could walk around and felt like crying out of joy: Lisa felt grateful that everything went well and it somehow made her appreciate her loved ones and everything around her. Then it was tough to get back into a work routine as there was a pile of things to get on with, with somehow limited energy levels. In addition, the children also needed extra attention and care. The first two months went by in a haze and Lisa hardly had time to catch her breath. However, after two months, everything was starting to feel normal again. Lisa is back into her exercise routine. As her father, she measured her performance before and after the kidney donation: after a drop of about 10%, it took her 9 months to get back to her pre-op fitness level. Her renal parameters are also coming back to levels almost as strong as before.
Final Words About Kidney Donations
Donating a kidney is a big decision, but ultimately an incredibly positive experience. Both Michael and Lisa felt good about their donations. They have recovered nicely and do not experience a diminished quality of life. By sharing their respective stories, they hope that their experience will be helpful for others who are considering a donation. Donating a kidney to a family member should not be a very difficult decision: the Pros dominate the Cons.
Donating a kidney altruistically, to a stranger, is a much bigger deal. We believe that society should consider some kind of compensation for such an act, to increase the number of live donors. There are important ethical arguments that are made in such situations, but the benefits for society should outweigh arguments against. If financial compensations are unacceptable, there may be other ways to reward donors, perhaps by means of free healthcare benefits and free life insurance. Since survival rates are statistically unchanged after donation of a kidney, a free life insurance as guaranteed by government should not be an extra burden to other tax payers. Still, it would reassure donors.
As to deceased donors, Spain seems to have created a system that should be emulated by other countries. Kidneys received from live donors will be generally healthier and have a better chance to last a long time, but, compared to dialysis, organs from deceased donors are still a better choice.