Living Transplant is a podcast that takes you behind the scenes at the transplant program at Toronto General Hospital with the goal to educate, inspire and fuel your passion about transplant, with your host, Candice Coghlan, an Education & Outreach Coordinator at the Centre for Living Organ Donation and kidney transplant recipient.
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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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Hall Skaara, a resilient PH patient and founder of the Norwegian Association for Pulmonary Hypertension, recounts his 19-year journey living with idiopathic pulmonary hypertension. He shares how he transformed the challenges of the pandemic into an innovative opportunity by helping create the Bel Air Center, a virtual global PH community space. The…
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Cynthia Neilson shares her journey as a mother raising her daughter Claire, who was diagnosed with pulmonary arterial hypertension (PAH) at a young age. Cynthia recounts the challenges she faced navigating the medical system, the emotional toll of dealing with an unexpected diagnosis, and the difficulties of balancing family life while ensuring her…
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In this episode of the Living Transplant podcast, host Candice Coghlan is joined by Winne Jerome who talks to us about her journey as a living donor to her sister through the Kidney Paired Donation Program, making that decision after having a premature newborn baby at home. She spoke about how when she found out she was able to donate a kidney to a…
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Natalie Roy is a double lung transplant survivor living in Canada. She was diagnosed with pulmonary arterial hypertension (PAH) in 2005 and received her transplant in 2017. . After her successful transplant seven years ago, Natalie experienced a difficult initial recovery but felt amazing once she started healing. The first two years were cautious,…
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Maureen Harper, a CTEPH patient from Canada, shares her journey with this rare condition. She initially thought she had an infection in her leg, but further tests revealed enlarged pulmonary arteries and multiple blood clots in her lungs. After being diagnosed with pulmonary hypertension, she underwent a complex surgery in Toronto to attempt to rem…
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Lynette Chambers, a 9-year PAH (pulmonary arterial hypertension) patient, has also been diagnosed with pulmonary fibrosis (PF). She shares her journey, from struggling with daily activities to being admitted to the hospital with severely low oxygen levels. Lynette discusses the emotional challenges of facing a terminal illness and the difficulty of…
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Episode 493 - John Kingrey, MD and Nicole Fitzgerald
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John Kingrey, MD, Director of the @integrishealth Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study). #GossamerBioPartner #sponsored Learn mo…
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Canadian patient, Kathy Downey, recounts her four-and-a-half-year journey with pulmonary hypertension (PH). Kathy shares the challenges of living with the condition, including reliance on high-flow oxygen and the emotional toll it has taken. Despite these obstacles, she has become a passionate advocate, educating others about PH and serving as an a…
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Sarah Stone shares the story of her family's journey with rare medical conditions in North Central Minnesota. Sarah's life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family's genetic predisposition to HHT. As their medical challenges unfolded wi…
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Maria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventual…
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In this episode, David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His …
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Lori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a "blue baby" and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diag…
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PAH patient and Chicago-area support group leader, Sue Liss, discusses her pulmonary arterial hypertension diagnosis. Sue is involved with multiple PH related advocacy groups. Through these groups, she offers support and guidance, particularly in navigating medication funding challenges and accessing the right care, emphasizing the importance of co…
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In this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for Cure HHT, discusses hereditary hemorrhagic telangiectasia (HHT), a genetic disease characterized by abnormal blood vessel development. HHT can cause bleeding in various parts of the body, with nosebleeds being the most common symptom. In some cases, HHT can le…
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Eric Borstein, who lives with pulmonary arterial hypertension, is walking from Los Angeles to San Diego to raise funds and awareness for the benefit of Team PHenomenal Hope. On September 21st, 2020, while at home, he collapsed from massive right heart failure and almost died. On September 22nd, 2024, four years after his PH diagnosis, he begin his …
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In this episode of the Living Transplant postcast, host, Candice Coghlan was joined by Stephanie Dyriw, a living liver donor to her son. Stephanie was put in a situation no parent could ever imagine, when her healthy, three and a half year old son crashed into liver failure with no warning. Within days, Stephanie and the UHN team worked tirelessly …
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In this episode, Thekla McGinley, a PAH patient and advocate, shares her journey with pulmonary arterial hypertension (PAH) and the changes she has witnessed in the treatment options and education for medical professionals. She emphasizes the importance of raising awareness and ensuring that patients have access to proper treatment. Thekla also dis…
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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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In this episode of the Living Transplant podcast, host, Candice Coghlan, was joined by Manuel Escoto, the Patient, Family, Donor Partnerships and Knowledge Mobilization Director at CDTRP, the Canadian Donation and Transplantation Research Program alongside Sadia Baig, the Programs Coordinator at the Kidney Foundation of Canada, Ontario branch. What…
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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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It's Not Outrageous: Jillian Best's Epic Swim Across Lake Ontario
1:01:31
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In this episode of the Living Transplant podcast, host Candice Coghlan was joined by Jillian Best, the first organ transplant recipient and one in only 72 people to ever swim across Lake Ontario in all of recorded history. Jillian trained, swam and built her mental fortitude so she could swim across Lake Ontario in 18 hours and 36 minutes. She fini…
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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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I Don’t Want to Just Survive, I Want to Live
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In this episode of the Living Transplant podcast, host Candice, was joined by Dawn Ethier, a police officer and mother of four. Dawn had thyroid cancer over 10 years ago. The cancer was treated, but she was left with hypoparathyroidism, which caused horrible side effects, changed her lifestyle, and took a lot of time away from her family, her work,…
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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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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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In this episode of the Living Transplant podcast, host Candice Coghlan was joined by Kelsey Hannah, an OR nurse and mother who went on a journey of health and wellness to lose weight to save her mother's life by donating a portion of her liver to her. We talked about her journey of self reflection, empowerment, dedication, and what it felt like to …
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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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WELCOME TO SEASON 5! In this episode, host Candice Coghlan was joined by Vanessa Tait, a Cree woman from O-Pipon-Na-Piwin Cree Nation who put her heart and soul into supporting her father, Kenneth, through his kidney health journey. She uprooted their lives to move from her father's home community of O-Pipon-Na-Piwin Cree Nation, over 700km north o…
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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 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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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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