Our Monthly Podcast
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Media Producer Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
Episode 40: Going Through a Liver Transplant: A Conversation Between a Husband & Wife
In episode 40 of the Living with PSC Podcast, Host Niall McKay and his wife Marissa Aroy give us a rare peek behind the microphone as they discuss Niall's recent liver transplant.
"We're doing a very unusual podcast today, because we're talking about myself," says Niall. "We don't really like to be on camera or in front of the microphone anymore, but we will make a special occasion of this for you to tell you what it was like for me to go and have a transplant."
Niall, who is just a couple of months into his recovery, started as an alternate for an available liver, and, after hours of testing, prep, and waiting, went home. Both he and Marissa fell into a deep sleep.
"Both of us sleep through our phones ringing like nine times, until the police bang on the door," says Niall, adding that it felt like it was happening in a dream. "So I get up. There's a cop at the door. He's like, 'Are you Niall McKay?' I was like, 'Yeah,' and he said, 'Will you answer your phone? (The hospital is) trying to get ahold of you!"
"It was a very abrupt and very startling thing to say and happen in the middle of the night," adds Marissa.
"My first thought was that I hope I hadn't missed it," states Niall.
Thankfully, he hadn't missed it, and Marissa and Niall share their feelings, memories, and more during this unique, special Living with PSC episode.
See links below for more information about Liver Transplants:
- Liver Transplant Surgery
- Acute and Chronic Rejection After Liver Transplantation: What A Clinician Needs to Know
- Liver Transplant Journey, PSC Partners Website
Episode 39: Post-Liver Transplant Recurrence of PSC: A Conversation with Dr. Palak Trivedi
In episode 39 of the Living with PSC Podcast, Host Niall McKay has an in-depth conversation with Dr. Palak Trivedi, BSc (hons), MBBS, MRCP Gastro (UK), PhD, Associate Professor, and Honorary Consultant Hepatologist, Birmingham University, UK. They discuss the recurrence of PSC in people who have received a liver transplant. Click HERE to listen to Episode 39.
"PSC has certain features of it which tell us it's an immune-mediated, and some people say autoimmune, disease. We are not changing the immune system when we do a liver transplant. We're changing part of it, because the liver has lots of immune cells, but not the immune system in the whole body, and that's why we believe that people with auto-immune liver diseases, including PSC, (may) develop recurrence," says Dr. Trivedi.
In this episode, McKay and Dr. Trivedi also talk about the differences between PSC and PBC, clinical trials searching for treatments and a cure, studies exploring the cause of PSC, and how IBD, particularly ulcerative colitis, may reduce the risk of post-transplant recurrence.
"In retrospective studies, our group and others around the world have found that people who have colitis and have had their large bowel removed (and have kept their stoma), lower their risk of developing recurrence of PSC."
Episode 38: When Your Husband is Your Living Liver Donor: A Conversation with Jessica and Ian Travis
In episode 38 of the Living with PSC Podcast, Host Niall McKay has an illuminating conversation with Jessica and Ian Travis about Jessica's journey with PSC, her search for a liver, and how her husband Ian became her live donor.
"I had alot of issues when I was first listed (for a liver transplant). I was having alot of panic attacks. I couldn't figure out why I was having them. I think alot of it was not having control over the situation." says Jessica.
According to the couple, their story involves lots of assistance and kindness from others along the way.
"You think you have to do this alone," says Jessica. "What you don't realize it that there's actually alot of people around who can help. You just have to ask for it, and that's a really hard thing to do."
Jessica's path to transplant was complicated ending with her husband secretly getting tested to be her donor, which she discovered while viewing a message on their shared online medical portal.
"I said (to Ian), 'So, you applied? When were you planning on telling me?' (He responded) Today," Jessica recounts to Niall with a giggle.
"Post-transplant, I have my wife back," says Ian.
For more information about Jessica and Ian's journey, including their revealing social media posts, Click HERE.
Episode 37: Improving PSC Diagnosis, Expediting Research, Facilitating Clinical Trials, & More: A Conversation with Dr. Laura Cristoferi
In episode 37 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Laura Cristoferi, hepatologist, clinical research fellow, and PhD candidate, at Milano Bicocca University in Italy. They discuss PSC diagnosis and disease progression, the importance of PSC registries to share knowledge and improve research, various PSC therapies, and more.
"We are building a national PSC registry in Italy," says Dr. Cristoferi. "We are trying to build a network in order to improve knowledge for diagnosis and management of this disease...and in order to have a rapid connection in case of clinical trials. Using this registry, we will have precise epidemiological data."
Dr. Cristoferi highlights various research endeavors including her project aimed at discovering biomarkers to enable a more precise determination of PSC disease progression over time.
Episode 36: Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska
In episode 36 of the Living with PSC Podcast, Host Niall McKay talks about drug repurposing with Ania Korsunska, MA, Biomedical Leadership Fellow and ROADMAP Project Lead, Castleman Disease Collaborative Network (CDCN).
"(Drug repurposing) is an opportunity to utilize existing drugs that are in development or already approved and redirect for the rare disease space," says Korsunska. "It's potentially cheaper than novel drug development, potentially faster. It's potentially easier to get these drugs into a position that a doctor can actually prescribe them."
Episode 35: Identifying and Mitigating Health Inequalities in PSC: A Discussion with Dr. Kidist Yimam
In episode 35 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Kidist Yimam, MD, Medical Director of the Autoimmune Liver Disease Program at California Pacific Medical Center. She is leading the PSC Partners Diversity, Equity, and Inclusion Working Group. In this podcast, they discuss health inequalities in PSC, including provider bias, lack of access to care, delay in diagnosis, importance of diversity in clinical trials, and more.
"It is not unusual to hear from some of our minority patients that they've been told by other providers that PSC affects people who are Caucasian, and they shouldn't be affected by the disease, leading to a delay in diagnosis of PSC, and even putting them at risk of poorer outcomes," says Dr. Yimam.
McKay and Yimam also discuss how including a diverse group of people in PSC natural history studies will allow researchers to better understand how genetics, socio-economic factors, cultural biases, and more affect the search for treatments and a cure for PSC. To make that happen, diversity is needed within the PSC Partners Patient Registry.
Episode 34: PSC Symptoms, Living Donor Transplant, and More: A Discussion with Nicola Tessier
In this episode, Host Niall McKay talks with Nicola Tessier, a post-transplant PSC patient, about her PSC diagnosis, dealing with symptoms, MELD score issues for PSC patients, receiving a living donor liver transplant from her brother, having children post-transplant, and much more.
"The need for a liver transplant was heavily driven by my (increased) risk for cholangiocarcinoma," says Tessier. "On paper, I looked less sick than I really was. So, the option of a living donor was a better fit for me."
She received 56% of her younger brother's liver. "It was a very special day," she says.
Episode 33: NIH Team Recruiting Patients for PSC Study: A Discussion with Dr. Theo Heller and Dr. Gracia Viana, NIH Clinical Center
In episode 33 of the Living with PSC Podcast, Host Niall McKay talks with Hepatologist and Senior Research Clinician Theo Heller, MD, and Hepatology Fellow Gracia Viana, MD, National Institute for Health (NIH) Clinical Center, about their primary sclerosing cholangitis (PSC) study. CHECK OUT EPISODE 33!
"We want to study the evolution of PSC," says Dr. Heller. "We're proposing a study that has the potential of unraveling some of the most fundamental aspects of the disease."
Dr. Viana adds, "We want to bring answers to these patients. (We hope to) explain the pathogenesis and try to (develop) new therapeutics for this disease that currently doesn't have an effective treatment."
Information about this study will be sent to PSC Partners Registry participants. If you are a PSC patient but have not yet joined the Patient Registry, now would be a good time. Click here for more information, or email firstname.lastname@example.org.
Episode 32: New Scientific Findings Point to Role of Contaminated Bile in the Onset of PSC: A Discussion with Dr. Espen Melum, MD, PhD, Norwegian PSC Research Center
In episode 32 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Espen Melum, MD, PhD, Norwegian PSC Research Center, about a new discovery in PSC research. Dr. Melum and his colleagues have discovered antigens that activate T cells, or MAIT cells, that are present in a number of PSC patients participating in the study. These findings point to the role of contaminated bile in the onset of PSC.
"I am optimistic. When it comes to these kinds of studies, you never know what concepts they will drive into and which will be the relevant one," says Dr. Melum. "I think it’s very important that there is a broad level of studies looking into different aspects of understanding the disease"
Dr. Melum will be one of the presenters at upcoming 2022 Annual PSC Partners Conference. He will be part of the Meet the Professor panel on Friday, June 3, 10:40-11:10 a.m., MT. Bring you questions!
Episode 31: What to Expect at the PSC Partners 2022 Annual Conference Part 2: An Interview with Conference Co-Hosts Dr. Korzenik and Dr. Pratt
In episode 31, Host Niall McKay talks with Josh Korzenik, MD, Brigham and Women's Hospital, and Dan Pratt, MD, Massachusetts General Hospital, about the upcoming 2022 Annual PSC Partners Conference, June 2-5, now in a virtual format. This is the second of two conversations about this Conference.
"It's going to be a slightly different and very exciting conference," says Dr. Korzenik. "It's envisioning a very different kind of future for PSC where there's a broader engagement of everybody, and it's really becoming much more of an international community, which is very exciting."
Dr. Pratt agrees, adding, "An exciting research initiative that will be rolled out at the conference is the WIND Initiative (Worldwide Integration of Natural History Databases), which will, hopefully, accelerate our identification of new therapies for PSC."
Episode 30: What to Expect at the PSC Partners 2022 Annual Conference Part 1: An Interview with PSC Partners Medical Science Liaison Joanne Hatchett
In episode 30, Host Niall McKay talks with Joanne Hatchett, Medical Science Liaison for PSC Partners, about the upcoming 2022 Annual PSC Partners Conference, June 2-5, now in a virtual format. This is the first of two conversations about this topic.
"Dr. Josh Korzenik of Brigham and Women's and Dr. Dan Pratt of Mass General Hospital have been working with our PSC Partners team to plan an amazing conference this year," says Hatchett. "Sessions will focus on featuring the patient's voice, because that's at the heart of the conference, (and we're also planning) many ways to meet, (learn), and socialize before during and after the (virtual event).
Episode 29: The Future of PSC Research and PSC Partners Research Priorities: An Interview with PSC Partners Former Director of Research Strategy Dr. Ruth-Anne Pai
In this episode, Host Niall McKay talks with Dr. Ruth-Anne Pai, PhD, PSC Partners Former Director of Research Strategy. They discuss the future of PSC research, the importance of patient voice and participation, PSC Partners research priorities, and more.
"We, as a community, with the patient voice, are prioritizing the most important questions," says Pai, adding that three primary areas of focus have been identified, so far. "Having a Patient-Reported Outcome Measure (PROM), surrogate endpoints, and an external control arm (will), we hope, accelerate and improve the rate of success for clinical trials."
- Epidemiology, Natural History, and Outcomes of Primary Sclerosing Cholangitis: A Systematic Review of Population-based Studies
- Population-Based Epidemiology, Malignancy Risk, and Outcome of Primary Sclerosing Cholangitis
- PSC Partners Annual Research Grant Awards
- We Are Not Immune: Racial and Ethnic Disparities in Autoimmune Liver Diseases
Episode 28: The Relationship Between PSC & IBD, the "Leaky Gut" Hypothesis, Microbiota, and more: A Discussion with Dr. Steven O'Hara
In episode 28, Host Niall McKay talks with Dr. Steven O'Hara, PhD, Associate Professor of Medicine, Assistant Professor of Biochemistry and Molecular Biology, and Research Scientist, Division of Gastroenterology and Hepatology at Mayo Clinic. They discuss the search for treatments and a cure for PSC.
"We're interested in the gut microbiome, of course, because we know there's a link between inflammatory bowel disease and primary sclerosing cholangitis," says Dr. O'Hara. "The multitude of microorganisms in the gut certainly influence many different diseases. There's increasing evidence that it may influence PSC, as well. So, our link would be what's happening in the gut...How does it actually affect the biliary epithelial cell function in this disease?"
Episode 27: The PSC Partners ROADMAP Initiative, Value of the Patient Voice, and more: A Discussion with PSC Partners Medical Science Liaison Joanne Hatchett
In episode 27, Host Niall McKay talks with PSC Partners Medical Science Liaison and PSC Caregiver Joanne Hatchett. They discuss her role at PSC Partners, the value of PSC Partners efforts to represent the patient voice, the current and future state of PSC research, the aim of the PSC Partners Roadmap Initiative, and more.
"Researchers have said that PSC is the black box of liver diseases," says Hatchett. "So little is known, and we need to delve deep, so that we discover the unknown aspects of (this rare disease)."
The two discuss the purpose of the ROADMAP Initiative and the role attendees and presenters play in moving PSC research forward.
"The purpose of (this series of webinars) is to bring together patients and researchers with the purpose of building PSC research knowledge and education for PSCers and their caregivers," says Hatchett, adding that the value goes both ways. "The researchers have told us how much they have learned from the PSC community. Nothing is too minute, because somebody may ask or say something to a researcher that sparks a connection or a new idea, and who knows what that may mean to research."
Episode 26 -- Fecal Microbiota Transplantation and Link Between Gut & Liver: A Discussion with Dr. Cyriel Ponsioen
In episode 26, Host Niall McKay talks with Dr. Cyriel Ponsioen, senior staff member at the Department of Gastroenterology & Hepatology at the Academic Medical Center (AMC) in Amsterdam, about research being done to determine the benefits of fecal microbiota transplantation in PSC patients with IBD. During the conversation, McKay and Ponsioen also speak about antibiotics, bacteriophages, the creation of the International PSC Study Group, and more.
"In PSC, there's only very limited data on the effect of (fecal microbiota transplantation)," said Dr. Ponsioen. "We used to think that we should look for the bad bugs, but, nowadays, we're more inclined to think that we should look for the good bugs. If we are able to identify which good bugs you need that are lacking in people with ulcerative colitis or Crohn's disease who also have PSC, then we're on a good track."
Episode 25 -- Use of Antibiotics for Clinical Treatment of Cholangitis in PSC: A Discussion with Dr. Gideon Hirschfield
In this episode, Host Niall McKay talks with Dr. Gideon Hirschfield about the use of antibiotics for the treatment of infection in primary sclerosing cholangitis (PSC). Hirschfield says that antibiotics are used for the treatment of intermittent, symptomatic cholangitis in patients with PSC.
"There's no evidence that the long-term use of antibiotics will change what ultimately happens to PSC patients," says Dr. Hirschfield. "But there's definitely evidence that, once you've got an infection, that drives PSC progression, which makes sense. Once the biliary tree is inflamed, it's never the same."
Dr. Hirschfield is the inaugural Lily and Terry Horner Chair in Autoimmune Liver Disease Research at the Toronto Centre for Liver Disease, Toronto General Hospital, and Professor of Medicine in the Division of Gastroenterology at the University of Toronto.
Episode 24 -- PSC Recurrence After Transplant and the Importance of Support: A Discussion with Post-transplant PSC Patient Mónika Aldarondo
"It's been interesting to learn that recurrent PSC does not follow the same trajectory or path as your original PSC," says Aldarondo. "So far, for me, this has been a really different experience."
In the podcast, McKay and Aldarondo cover several interesting topics, including:
- Long-term Prognosis and Recurrence of Primary Sclerosing Cholangitis After Liver Transplantation: A Single-Center Experience
- Ring Theory
- Spoon Theory
- But You Don’t Look Sick
- PSC Partners Mentor Program
Episode 23 -- PSC & Diet, Understanding IBD/PSC Relationship, and MORE, A Discussion with Dr. Josh Korzenik
In episode 23, Host Niall McKay talks with Dr. Josh Korzenik, gastroenterologist, director of the Resnek Family Center for Primary Sclerosing Cholangitis Research, and director of Brigham and Women’s Hospital Crohn’s and Colitis Center at Harvard Medical School.
"In order to understand PSC, we need to understand (IBD). That's the best clue we have, and in order to understand (IBD), we need to understand PSC. We think that (they) hold valuable insights for the other," says Dr. Korzenik.
Episode 22 -- The Importance of the PSC Partners Registry: A Discussion with Registry Director Rachel Gomel
In episode 22, Host Niall McKay talks with PSC Partners Patient Registry Director Rachel Gomel about the value of the PSC Patient Registry and the importance of this database in the search for treatments and a cure for PSC.
"The collected information helps in our understanding of where our rare patients are located. The registry also shows us who could be a match for a specific clinical trial, and how aggregated data collected on patients can show disease trends and unmet needs," says Gomel. "The privacy of the patients is of utmost importance to PSC Partners," she adds.
Episode 21 -- Microbial Metabolism and PSC: A Discussion with Dr. Hov
In episode 21, Host Niall McKay talks with Dr. Johannes Hov, professor of gastroenterology, University of Oslo, Norway, member of the Norwegian PSC research group, and member of the PSC Partners Scientific/Medical Advisory Committee (SMAC). They discuss research being done on PSC and the microbiome.
"What we have been doing, so far, is really to study the composition of the microbiome in patients with PSC. What we have found is that it's a lot different from individuals who are healthy, but what does this mean? That's really the big question."
Hov and McKay explore this in this episode of the Living with PSC Podcast.
Episode 20 -- Liver Transplants and PSC: A discussion with Dr. Julie Heimbach, transplant surgeon and surgical director of Liver Transplantation at Mayo Clinic
In episode 20, Host Niall McKay talks with Julie K. Heimbach, M.D., transplant surgeon and surgical director of Liver Transplantation at Mayo Clinic. They discuss various aspects of PSC and liver transplants. "Ideally, we could provide (liver transplants) at the exact time when it is appropriate for the patient. Unfortunately, there are not enough donor livers available for that to happen," Dr. Heimbach tells McKay in this podcast.
Episode 19 -- Pediatric PSC with Cara Mack, MD, University of Colorado School of Medicine and Children's Hospital Colorado
In the 19th episode, Host Niall McKay talks with Dr. Cara Mack, University of Colorado School of Medicine and Children's Hospital Colorado, about pediatric primary sclerosing cholangitis (PSC). They discuss treatments being investigated, symptoms, liver transplant, the hygiene hypothesis, and more.
Episode 18 -- Discussion with Dr. Nathan Baggett, PSCer, Medical Resident, and Multiple Liver Transplant Recipient
In the 18th episode, Host Niall McKay talks with Dr. Nathan Baggett, medical resident and PSCer who has undergone multiple liver transplants.
“I never wanted PSC to put limits on how I live my life,” says Dr. Baggett.
Episode 17 - Dr. John Eaton, Current and Future Prospects in PSC Research and Treatments
In the 17th episode, Host Niall McKay talks with Dr. John Eaton, MD, transplant hepatologist and gastroenterologist at Mayo Clinic, about the future with regards to discovering new treatments and, eventually, a cure for PSC. “I am more optimistic than I have ever been about the future prospects of caring for people with PSC,” states Dr. Eaton.
Episode 16 – Dr. Jerome Schofferman, PSC: A Patient-Doctor Perspective
In the 16th episode of Living with PSC, Niall McKay talks with Dr. Jerome Schofferman, MD, about his dual role as PSC patient and physician and what it has taught him about living with a chronic illness, treating patients, and including caregivers in the process.
Dr. Schofferman, MD., is a retired Internist and Pain Medicine Specialist from Sausalito, CA. Check out this episode!
Episode 15 – Dr. Christopher Bowlus, Drug and Clinical Development for Treatment of PSC
In the 15th episode of Living with PSC, Media Producer Niall McKay talks with Co-Chair of PSC Partners Medical Advisory Committee Dr. Christopher Bowlus, Division Chief of Gastroenterology & Hepatology and Professor at UC Davis School of Medicine, about drug and clinical development in the search for treatments and a cure for primary sclerosing cholangitis (PSC). Check out this episode!
Episode 14 – Dr. James Tabibian, Vancomycin as a Treatment for PSC
In the 14th episode of Living with PSC, Media Producer Niall McKay has a conversation with Dr. James Tabibian, a gastroenterologist and director of endoscopy and resident research director at Olive View-UCLA Medical Center, about the possible use of Vancomycin as a treatment for primary sclerosing cholangitis (PSC).
Episode 13 – PSC Partners Conference Conversations
In the 13th episode of Living with PSC, Niall McKay talks with attendees, presenters, and hosts at the 15th Annual PSC Partners Conference. Check out this episode!
Episode 12 – John Crowley: Living Donor Transplants and PSC
In the 12th episode of Living with PSC, Niall McKay discusses living donor liver transplants and PSC with John Crowley, whose brother was his living donor. Check out this episode!
Episode 11 – Monika Aldarondo: Motherhood and PSC
In the 11th episode of Living with PSC, Niall McKay discusses motherhood and PSC with Monika Aldarondo, a PSCer juggling parenthood and her rare disease. Check out this episode!
Episode 10 – Dr. Valentina Medici: Nutrition and PSC
In the tenth episode of Living with PSC, Niall McKay discusses nutritional guidance for PSC patients, with Dr. Valentina Medici, Associate Professor, University of California Davis. Check out this episode!
Episode 9 – Dr. Konstantinos Lazaridis: The Interaction Between Genetics and Environmental Exposures in PSC
In the ninth episode of Living with PSC, Niall McKay discusses the interaction between genetics and environmental exposures in PSC, with Dr. Konstantinos Lazaridis from Mayo Clinic Rochester. Dr. Lazaridis has received multiple PSC Partners research grants. Check out this episode!
Episode 8 – Dr. Heather Francis: Impact of URSO on PSC
In the eighth episode of Living with PSC, Niall McKay discusses the influence of the medication Ursodiol (aka URSO and UDCA) on PSC, including the impact of combining it with antihistamines, with Dr. Heather Francis, PhD, associate professor at the Texas A & M College of Medicine and recipient of a PSC Partners research grant. Check out this episode!
Episode 7 – Dr. Julie Heimbach: Liver Transplantation and PSC
In the seventh episode of Living with PSC, Niall discusses liver transplantation and PSC with Dr. Julie Heimbach, transplant surgeon and surgical director of liver transplantation at Mayo Clinic in Rochester, MN. Check out this episode!
Episode 6 – Trish Stoltzfus: The New ICD-10-CM Code for PSC
In the sixth episode of Living with PSC, Niall McKay interviews Trish Stoltzfus, professional medical coder and mother of a PSC patient, about the new ICD-10 code for primary sclerosing cholangitis (K83.01). Check out this episode!
Episode 5 – Dr. Cyriel Ponsioen: Fecal Microbiota Transplantation
In the fifth episode of Living with PSC, Niall McKay interviews Dr. Cyriel Ponsioen about Fecal Microbiota Transplantation (FMT). Dr. Ponsioen is a senior staff member at the Department of Gastroenterology & Hepatology at the Academic Medical Center in Amsterdam, and is a member of PSC Partners’ Scientific/Medical Advisory Committee. Check out this episode!
Episode 4 – A Conversation with Dr. Gideon Hirschfield
In the fourth episode of Living with PSC, Niall McKay interviews Dr. Gideon Hirschfield about a variety of topics related to PSC. Dr. Hirschfield is a member of PSC Partners’ Scientific/Medical Advisory Committee. Check out this episode!
Episode 3 – Dr. Scott Bea: Living with the Uncertainty of PSC
In the third episode of Living with PSC, Niall McKay interviews Dr. Scott Bea about the uncertainty of living with PSC. Dr. Bea is a Clinical Psychologist at the Cleveland Clinic. Check out this episode!
Episode 2 – Dr. Chris Bowlus: Diet & Emerging Trends
In the second episode of the Living with PSC podcast, Niall McKay interviews Dr. Chris Bowlus about diet and some of the emerging treatments for PSC. Dr. Bowlus is a Professor and Division Chief of Gastroenterology and Hepatology at the University of California, Davis, and was co-host of our 2018 Conference in Sacramento. He is also co-chair of PSC Partners’ Scientific/Medical Advisory Committee and scientific head of the PSC Partners Registry. Check out this episode!
Episode 1: Ricky Safer: A Patient’s Perspective
In Episode 1, Niall speaks with Ricky Safer, Founder and CEO of PSC Partners Seeking a Cure. Check out this episode!
Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure. Find information about clinical trials.