Primary sclerosing cholangitis (PSC) is a rare disease that affects the bile ducts inside and outside of the liver. There is no cure, and no treatments exist to slow the progression of PSC. This podcast, moderated by Niall McKay, 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! PSC Partners Seeking a Cure is a nonprofi ...
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I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because ea ...
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The On-Air Advocate podcast provides education, advocacy and support for special needs parents, caregivers, those with disabilities and complex medical conditions.
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Dr. Morris Salem is a pediatric congenital cardiologist and adult congenital heart disease specialist at Kaiser Permanente in Southern California. He takes care of patients of all ages, from fetuses to elderly individuals. Dr. Salem's primary focus is interventional cardiac catheterization, specifically the closure of holes in the heart. He also de…
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Episode 482 - Claire Champion, MSN, APRN, CPNP
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Claire Champion is a nurse practitioner at Texas Children's Hospital, specializing in pulmonary hypertension. As a nurse practitioner, she has the opportunity to see some of the patients as outpatients, which allows her to witness positive outcomes and the resilience of children. She also highlights the need for nurses to have a support system to c…
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2024 PSC Partners Annual Conference, Cutting-Edge PSC Research, and the Search for a Cause: A Conversation with Dr. Tom Karlsen
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In episode 45 of the Living with PSC Podcast, Host Niall McKay talks with Tom Karlsen, MD, PhD, Co-Chair of the 2024 PSC Partners 20th Anniversary Annual Conference, and Clinical Specialist in Internal Medicine and Gastroenterology, Oslo University Hospital, Norway. "I've worked on PSC for more than 20 years, and that aligns nicely with the 20-year…
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In this episode, Dr. Charles Burger, the medical director of the Pulmonary Vascular Center at Mayo Clinic in Jacksonville, Florida, discusses the importance of patient registries, specifically the Pulmonary Hypertension Association’s PHA Registry (PHAR) for pulmonary hypertension. This registry collects clinical information and surveys from patient…
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In this episode, Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and cho…
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In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis …
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Tina Proulx was diagnosed with pulmonary hypertension at the age of 19. She experienced difficulty breathing and chest pain, leading to a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by blood clots in the lungs. Tina eventually underwent transplant and celebrated eight years post-transplant, surpassing the …
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Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sa…
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Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon lea…
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In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance med…
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Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension,…
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Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending …
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In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to d…
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Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to liste…
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In this episode, Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic la…
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Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make t…
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Early Detection of Cholangiocarcinoma: A Conversation with Dr. Jesse Kirkpatrick
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PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…
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Haley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works a…
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Dr. Jason Weatherald, a pulmonologist at the University of Alberta, discusses a study on the socioeconomic burden of pulmonary arterial hypertension (PAH) in Canada. The study, conducted through PHA Canada, surveyed PAH patients and their caregivers to understand how the disease affects their ability to work and perform daily activities. The result…
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Karen Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections amon…
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In this episode, Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joell…
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In this episode, Chelsea Price shares her experience living with pulmonary arterial hypertension (PAH). She emphasizes the importance of having a good support system, including her church community and connecting with other friends with PAH. Chelsea is grateful for the good days she has and strives to be an active mom for her children. Discover eve…
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In this episode, Dr. Rajan Saggar, a pulmonologist at the University of California in Los Angeles, discusses the complications of pulmonary hypertension in various lung diseases. He explains that pulmonary hypertension can either be its own disease or can complicate other conditions such as heart disease or lung tissue diseases like emphysema or fi…
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In this episode, Dr. Sandeep Sahay, a pulmonologist at Houston Methodist Hospital, discusses the concept of disease modification in the treatment of pulmonary hypertension (PH). He explains how traditional PH therapies focus on vasodilation, reducing pressure in the pulmonary artery by dilating blood vessels. However, newer therapies, such as sotat…
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Dr. Lewis Romer discusses his work on the PPHNet's Kids MoD PAH Trial: Mono- vs. Duo-Therapy for Pediatric PAH patients. The Kids Mod PAH study is a research project funded by the NIH that aims to determine the best initial therapy for children with newly diagnosed pulmonary hypertension. The study compares the effectiveness of one medication (sild…
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In-Depth Look Inside the 2023 PSC Partners Conference: A Conversation with Medical Science Liaison Joanne Hatchett
20:53
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PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…
…
continue reading
In this episode, Dr. Morris Salem, a pediatric cardiologist, discusses his involvement with Camp del Corazon, a camp for children with congenital heart disease. Dr. Salem emphasizes the importance of addressing the emotional well-being of these patients, in addition to their physical health. He believes that the camp helps boost their self-confiden…
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In this episode, Brittany Valim shares her experience with pulmonary hypertension and her journey towards a heart and double lung transplant. She now lives a fulfilling life as a mother, student, and aspiring nurse. Brittany encourages others to embrace life and ride the wave, appreciating the rarity of their experiences. Learn more about pulmonary…
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In this episode, stroke survivor and journalist, Cam Wells, discusses his mission to change the way disability stories are portrayed in the media. Cam also discusses his work in the disability community, including his involvement with the Italian Canadian HandiCapable Association, which provides sports and recreation opportunities for people with d…
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Rejection and PSC Recurrence After Liver Transplant: A Conversation with Dr. David Goldberg
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PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…
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continue reading
Harm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the use of magnetic resonance imaging (MRI) in monitoring pulmonary hypertension patients. Dr. Bogaard explains that MRI is a valuable tool for assessing the function and structure of the right heart, which is crucial in determining the prognosis an…
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Pulmonary hypertension patient, Dawn Clarke, a resident of the Mississaugas of the Credit First Nation in Southern Ontario. Despite her rare disease diagnosis, Dawn decided to focus on her mental health and explore her creative passions. She emphasizes the importance of looking after all aspects of one's well-being, including physical, mental, emot…
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New Jersey patient, Linda Wimmer, shares her experience with idiopathic pulmonary arterial hypertension. Linda discusses the various medications and lifestyle changes she has had to make to manage her condition. She also mentions dealing with depression and anxiety, as well as the challenges of accepting help from others. Learn more about pulmonary…
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In this episode, Drs. Patricia George and Harrison "Hap" Farber from Team PHenomenal Hope discuss takeaways and learning from PHenomenal Hope 2023. This symposium offered a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collaboration and a deeper exploration of patient-centered res…
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Lia Barros, a nurse practitioner at the University of Washington, discusses the role of nurse practitioners in caring for patients with pulmonary hypertension. She emphasizes the importance of nurse practitioners in meeting the unique needs of patients with pulmonary hypertension and suggests that adopting collaborative care models can improve pati…
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Meet Dr. Stephen Rossi: A Conversation with the PSC Partners Chief Scientific Officer
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PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…
…
continue reading
Dr. Sam Rayner is an assistant professor and pulmonary hypertension specialist at the University of Washington. In this episode, he discusses the different ways physicians can get involved in pulmonary hypertension research. He explains that he is a physician scientist, dividing his time between patient care and scientific research focused on PH. L…
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Harm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the role of genetic testing in the treatment of patients with pulmonary hypertension at its role in clinical research. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cur…
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Six years ago, Canadian pulmonary hypertension patient Sharon Tokonitz was rushed to the hospital with a massive bilateral unprovoked pulmonary embolism. She discusses her road to recovery from being bedridden to returning to an active life thanks to pulmonary rehab. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrial…
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Episode 448 - Saire Gonzalez, RN and Kimberly Hudson, RN
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10:37
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Kimberly Hudson and Saire Gonzalez are registered nurses with CVS Specialty Pharmacy who work with patients with pulmonary hypertension (PH). They provide support, education, and guidance to patients who are newly diagnosed with PH and help them navigate their drug therapies and lifestyle changes. They also highlight the role of caregivers and the …
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In this episode, Dr. Raymond Benza, a Professor of Medicine at the Icahn School of Medicine at Mount Sinai, discusses dual therapy in the treatment of pulmonary hypertension (PH) through the concept of risk stratification. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a …
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In this episode, pediatric cardiologist, Nancy Halnon, MD, discusses treatment goals for pulmonary hypertension, the various routes of administration and the importance of using combination therapy to improve survival. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure…
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In this episode, Angela Bates, MD from Stollery Children’s Hospital, discusses the importance of incorporating quality of life into the management strategies for pediatric pulmonary hypertension patients. Dr. Bates also talks about the importance of allowing patients to engage in activities they enjoy, even with limitations imposed by their conditi…
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In this episode, Vinicio de Jesus Perez, MD discusses some of the most recent clinical developments in the field of pulmonary hypertension, highlighting new and ongoing clinical trials that are of great interest to the medical community as well as caregivers and patients looking forward to novel ways of treating their condition. Learn more about pu…
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In this episode, Peter Leary, MD talks about factors that might lead to over-treatment, under-treatment, or "just-right" treatment and emphasizes that guidelines are important but there is no "one-size fits all" approach to treatment of pulmonary hypertension. Peter Leary is the director of the pulmonary vascular disease program at the University o…
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In this episode, PHA Canada Board Director, Sanjay Mehta, MD discusses the recently updated 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension, the gaps in understanding and the reasons why. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a c…
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In this episode, pulmonary hypertension pediatric care partner, Karina Macias, discusses her son Tito's PH journey and why she dedicated her life to becoming a certified nurse assistant. Tito was named Stanford's Race Against PH 2023 Pediatric PH Courage Award recipient. #raceagainstph @phaatstanford Learn more about pulmonary hypertension trials a…
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Mitesh Thakrar, MD is a Clinical Associate Professor at the University of Calgary and the current Deputy Medical Director of the Southern Alberta Transplant Program. In this episode, Dr. Thakrar discusses titration of pulmonary arterial hypertension therapeutics. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. F…
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Former pulmonary hypertension patient, Sarah Sizemore discusses life 1 year post-lung transplant surgery. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com…
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Kristina Kudelko, MD, is the Director of Education and Stanford's Vera Moulton Wall Center. She discusses the 23rd annual #RaceAgainstPH, how it raises awareness and funds for this devastating rare disease and the importance of PH Courage Award winners. Don't miss the 23rd Annual Race Against PH at November 5 hosted by the Vera Moulton Wall Center …
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