PHAware

Canadian resident, Stephen Gariepy, was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) in 2018. After initially being active in senior hockey, his condition worsened, leading to difficulty breathing and performing daily tasks. Gariepy continues to live with this rare and terminal disease, adapting to the limitations it imposes on his daily life.

Nurse Practitioner Janette Reyes from the Pulmonary Hypertension Program at the Hospital for Sick Children shares her extensive experience caring for pediatric patients with pulmonary hypertension. Reyes discusses the unique challenges and developmental considerations involved in treating children from infancy through their teenage years, as they transition to adulthood. Reyes also touches on the emotional and social struggles these young patients face, such as bullying and anxiety, and highlights the role of the multidisciplinary team in supporting their mental well-being.

Dr. Lisa Mielniczuk, a cardiologist at the Mayo Clinic in Rochester, shares her personal journey of becoming interested in pulmonary hypertension and the challenges faced by patients in accessing care. Dr. Mielniczuk emphasizes the importance of building connections with patients and involving them in decision-making. She discusses the CRAVE study, which aims to test novel and repurposed therapies for right heart failure using a platform trial design. She highlights the importance of patient involvement in the trial design and its upcoming feasibility study.

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 daughter received the best possible care. Cynthia emphasizes the value of connection, resilience, and advocacy for families dealing with rare diseases.

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 balancing work and family time. Despite the hard reality, Lynette emphasizes the importance of gratitude, making others feel better, and being the best version of oneself. She finds strength in her family, especially her grandchildren, and strives to create lasting memories and make a positive impact on those around her.

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 average lifespan post-transplant. Tina emphasizes the importance of advocating for oneself in the healthcare system and encourages others to trust their instincts and fight for their needs.

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.

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.

On the 14th anniversary of her son’s life-saving lung transplant, Canadian pulmonary hypertension care partner, Jennifer Gendron discusses how the PH landscape has changed over the past 20 years and life post-surgery.

Canadian pulmonary hypertension patient, Colleen Carroll was wrongly diagnosed with severe anxiety and asthma before she ever heard the words “pulmonary hypertension.” Now she faces each day with a positive attitude, a good diet, exercise regimen, and the power of her faith.

Canadian pulmonary hypertension patient, Kaitlyn Salonga discusses the impact PH has had on her job, her relationship and her mental wellbeing.

Canadian pulmonary hypertension patient, Susan Cosenzo discusses her PH diagnosis, the struggles of being a single mom living in government housing and how she overcame alcohol addiction.

PHA Canada Board Director, Dr. Sanjay Mehta, discusses the 2022 ESC/ERS Guidelines for diagnosing and treating pulmonary hypertension, highlighting gaps in understanding and areas for improvement.

Canadian pulmonary hypertension patient, Stacy Physick was diagnosed with PH in 2011. She immediately got her affairs in order, believing she only expected to survive 1–3 years. Now, 10 years post-diagnosis she shares her journey and her conscious decision to lead a normal life.

In this episode Derek discusses is road to diagnosis with a rare form of pulmonary hypertension, the mental challenge of PTE surgery and the misconceptions of Canada’s socialized medicine program.

Darren Bell is a former PHA Canada President and Chair of the Board of Directors. One of PHA Canada’s founding board members, Darren joined the PH community when his son Dylan was diagnosed with IPAH in 1998. Dylan lost his battle with PAH in 2007 at the age of 12, two years after his younger brother Hunter passed away from an acute intestinal illness at the age of 7.

Dr. Angela Bates is pediatric PH specialist from Stollery Children’s Hospital. She is committed to conducting research in pediatric patients in the areas of critical care, specifically those with congenital heart disease and those affected by infectious diseases in the critical care arena, as well as patients presenting with pulmonary hypertension of all etiologies. Her research is focused on improving diagnosis, treatment, outcomes and resources available to these patients. In this episode, Dr. Bates discusses the importance of early diagnosis.

Pediatric PH caregiver Kristine Ritchie discusses her son Brendan’s pulmonary hypertension diagnosis. Kristine talks about the importance of advocating for her child, the power of online support groups and struggle of navigating a new normal.

Canadian caregiver Jennifer Gendron has been working with the pulmonary hypertension community since 2003, when her son Braden was diagnosed at the age of five. She discusses Braden’s PH journey that ultimately led to him having a double-lung transplant at The Hospital for Sick Kids in September 2009.

Canadian Natalie Roy is a former pulmonary hypertension patient who received a double-lung transplant in September 2017. She discusses having an identity crisis post PH.

Canadian Pulmonary Hypertension Patient, Marion Roth discusses the importance of clinical trials, fearlessly tackling her bucket list and educating the world about #phaware-ness.

Jamie Myrah joined PHA Canada as the organization’s first Executive Director in January 2016. She is responsible for overseeing all of their operations, including providing support and guidance to the staff in delivering programs and services. She also works closely with the Board of Directors on governance, strategic planning, public and government relations, and fund development. She works closely with Canada’s PH community to create changes that improve the lives of all those affected by pulmonary hypertension. In this episode, Jamie discusses PHA Canada’s 10 year anniversary.

Dr. Tilman Humpl is the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children in Toronto, which is part of the Pediatric Pulmonary Hypertension Network (PPHNet). One focus of Dr. Humpl’s clinical work is the management of children on a ventricular assist device. As the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children, he runs an outpatient clinic with referrals from several Canadian provinces. He discusses his contribution to the Pediatric Pulmonary Hypertension Guidelines.

Canadian pulmonary hypertension patient, Jenn Lalonde discusses her road to diagnosis, the need for PH awareness and how she is using writing as a therapeutic tool that not only benefits her but others as well.

Allison Feenstra shares her transformative journey from being an active, independent young woman to navigating life with pulmonary hypertension (PH). She recounts how a sudden blackout led to hospital visits and the discovery of the condition, stemming from complications related to prolonged bed rest and birth control medication. Allison candidly discusses how she underwent a significant surgery and persevered through a high-risk pregnancy, ultimately becoming a mother.

Jennifer Howard’s inspiring story is one of resilience and hope in the face of immense challenges. Diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in July 2019 after a long and frustrating path to answers, Jennifer faced the daunting reality of living with a chronic illness requiring continuous IV medication through a pump. Despite the overwhelming nature of her diagnosis, Jennifer discovered an inner strength she never knew she had. With a focus on living life to the fullest, she learned to navigate both the bad days and the good, embracing moments that brought her happiness and refusing to let despair take root.

In our 500th episode, Dr. Jason Weatherald, a pulmonologist at the University of Alberta in Canada, discusses a project called CRAVE (Canadian Right Ventricular Failure Adaptive Platform) to address the lack of treatments for right heart failure in patients with pulmonary hypertension. He explains that platform trials, which allow for multiple interventions to be tested simultaneously, are more efficient and offer a higher chance of receiving a potential therapy compared to traditional clinical trials. Dr. Weatherald emphasizes the importance of patient involvement in research and highlights the use of phaware’s HeartWorks mobile app, which allows patients to measure their walking distance at home, as a potential endpoint in the trial.

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, but she was able to achieve many milestones she never thought possible, including getting married, playing sports, and changing careers.

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 ambassador for PHA Canada. Throughout, Kathy highlights the crucial support from her husband and the difficulties caregivers face.

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 results showed that a significant number of PAH patients were unable to work or had limited career options due to the disease. The study also highlighted the impact of PAH on caregivers, with many having to assist patients with daily activities. The findings emphasize the need for healthcare professionals to discuss the implications of PAH on patients’ ability to work and access support. Read the report here: https://phacanada.ca/burden

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 condition, and the need for a multidisciplinary team to provide comprehensive care.

Canadian pulmonary hypertension care partner, Joan Gibson discusses her daughter Jane’s path to diagnosis, decision to embrace surrogacy, and her road to recovery after two PH related strokes.

Canadian pulmonary hypertension care partner, Don Downey, discusses his wife Kathy’s road to diagnosis — which was confirmed on Friday March 13, 2020 — the day the world shut down and how they navigated her new normal during lockdown.

Canadian pulmonary hypertension and scleroderma patient, Jane Macleod is a retired RN. She discusses reasons for her delayed diagnosis, the importance of pulmonary rehab, and the challenges of living a her new normal.

PHA Canada Patient Ambassador, Jane Sernoskie discusses her pulmonary hypertension diagnosis and becoming a mom through surrogacy.

Canadian Pediatric PH Care Partner, Kristine Ritchie, discusses her son Brendan’s 10 plus year journey with pulmonary hypertension, the importance of self-care and the impact PH has on her entire family.

Pulmonary Hypertension patient and PHA Canada former Board Chair, Nicole Dempsey, celebrates 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9–10 in Ottawa, ON.

Canadian pulmonary hypertension patient, Tarya Morel discusses parenting in times of a pandemic.

Kaarina Wilson is a self-described Canadian patient, leader, chronic illness defeater from Canada. She discusses her PH, CTEPH, and scleroderma diagnosis as well as the road to lung transplant, rehab, recovery and self-isolation in a time of coronavirus. This episode was recorded from her Toronto hospital bed on 4/2/20. Kaarina lost her rare disease battle 3 days later.

PHA Canada ambassador Judith Moatti discusses the importance of early diagnosis and awareness. Judith was first diagnosed with Pulmonary Arterial Hypertension (PAH) in 2009, at the young age of 25. After a long road to stability and coping with her new reality, she has become a strong advocate and spokesperson for those affected by PAH. Locally, she became a patient representative for Foundation HTAPQ (a Québec-based patient support organization) in 2012. And she also works as a support group leader for patients living or affected by PH in her region.

Dr. John Granton the head of Respirology at University Health Network, Mount Sinai Hospital and Women’s College Hospital. He is a consultant in respirology and critical care at the Toronto General Hospital and Professor of Medicine at the University of Toronto. He established and remains the director of the pulmonary hypertension (PH) program at the University Health Network. In this episode, Dr. Granton discusses the importance of early diagnosis.

Diagnosed with IPAH almost 16 years ago, Canadian Sonya Collins discusses spending about four years questioning her shortness of breath (SOB) and severe fluid retention. Sonya details why she became a PHA Canada Ambassador and how her short and long term goals have shifted over the years thanks to her PH therapies.

Janette Reyes, NP has provided comprehensive care for children with Pulmonary Hypertension at the Hospital for Sick Children since the development of the Pulmonary Hypertension Service in the year 2000. She is involved in research and strives to improve pediatric patients’ quality of life. Janette discusses Child to Adult Transition Guidelines specific to the pulmonary hypertension patient population.

Canadian Pulmonary Hypertension Patient, Brooke Paulin discusses her road to PH Diagnosis.

Dr. Humpl discusses pediatric pulmonary hypertension patients transitioning to an adult PH program. Tilman Humpl, MD is the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children in Toronto, which is part of the Pediatric Pulmonary Hypertension Network (PPHNet). One focus of Dr. Humpl’s clinical work is the management of children on a ventricular assist device. As the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children, he runs an outpatient clinic with referrals from several Canadian provinces.

Tarya Laviolette is a pulmonary hypertension patient from Canada. She is a former Community and Relations Coordinator for Pulmonary Hypertension Association of Canada. Tarya now serves as a Research/Health Policy Officer for the BC Nurses’ Union. She discusses how her nursing team is absolutely integral to her care.

Jas James is a pulmonary hypertension patient and long-term survivor from Canada. She discusses the moment she realized there was something more than pneumonia that was causing her breathlessness.

On the 28th anniversary of her PH diagnosis, Jodi Berry shares her journey of living with pulmonary hypertension. Despite facing an initial prognosis of only a few years to live, Jodi’s determination and the support of her family, friends, and healthcare professionals helped her manage her condition while maintaining an active lifestyle. Over time, advancements in treatments and her proactive participation in clinical trials provided hope and improved her quality of life.

Kaitlyn Salonga shares her journey of resilience and advocacy while living with pulmonary hypertension (PH). Kaitlyn recounts her fight for personal autonomy, including a successful battle to secure surgery for her reproductive health after initial denials due to weight and health concerns. Through her triumphs, she highlights the importance of advocating for oneself in the face of medical and societal challenges. Her story is a powerful testament to embracing one’s identity, breaking down stigma, and showing that life with PH can be fulfilling and bold.

Tanya Stinson shares her journey of being diagnosed with pulmonary hypertension (PH) after persistent symptoms and misdiagnoses. Her struggle highlights the difficulty of finding the right diagnosis and the emotional toll of living with a rare, chronic disease. Tanya’s experience underlines the fear, mental challenges, and hope intertwined in navigating PH, inspiring others to seek support and find solace in community, showing that even in isolation, they are not alone.

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 remove the clots. Maureen continues to work full-time as a pharmacy technician, remains active with her family and Girl Guide unit, and maintains a positive outlook, choosing to focus on the positives rather than dwell on the negatives.

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 eventually linked to pulmonary hypertension. Her story reflects on the psychological impact of chronic illness and the empowerment gained from community support and self-advocacy.

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, emotional, and spiritual health. She encourages others to find their purpose and make positive changes in their lives, even in the face of challenges.

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.

Pulmonary hypertension patient, Jo-Anne Mainwood, is a Canadian school teacher who couldn’t keep up with her students, friends and family. After a long journey of misdiagnosis, Jo-Anne details why PH is not a one-size-fits-all disease.

15 years ago, after the birth of her 2nd child, Canadian pulmonary hypertension patient, Carol Doyle Ploughman was told she had only two years to live. Now, a decade and a half later, on her birthday, Carol discusses how she has maintains a healthy and active lifestyle and the importance of clinical trials for PH patients.

Canadian pulmonary hypertension patient, Vanda McLean was forced into early retirement due to her diagnosis. She discusses how she navigates depression, the importance of support and how she faces an uncertain future.

PH patient Jas James shares her long-term survival journey and how she realized her breathlessness was more than pneumonia.

PHA Canada Ambassador and pulmonary arterial hypertension patient, Brin Marks, discusses her road to diagnosis, her strategies for staying positive and why she wants to be a voice for change for pediatric PH patients everywhere.

Dr. Bernard Thébaud is a clinician-scientist with a focus on the clinical translation of stem cell-based therapies for lung diseases. Dr. Thébaud is a senior scientist with the Ottawa Hospital Research Institute (OHRI) and Children’s Hospital of Eastern Ontario Research Institute (CHEO RI), and a neonatologist with the Children’s Hospital of Eastern Ontario (CHEO), where he provides care to critically ill newborns. Dr. Thébaud discusses the importance of innovative cell-based or gene therapies to lessen pulmonary hypertension.

Pulmonary Hypertension Patient Allison Wells is a substitute teacher from Gander Newfoundland. In this episode, Allison discusses self-diagnosing her PH and her decision to adopt.

Sisters Paisley Dempsey (10) and Carys Dempsey (11) discuss their mother Nicole’s PH diagnosis and their roles as caregivers. Nicole served as a PHA Canada Ambassador from 2014–16, before being elected to the Board of Directors in 2017. She was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in 2013. Prior to her diagnosis, Nicole worked as an elementary school teacher for 12 years. The Dempsey family resides in Cambridge, Ontario.

Dr. Marc de Perrot joined the Division of Thoracic Surgery as a staff surgeon and Assistant Professor at the University of Toronto in 2005. In 2009, he was appointed Associate Professor of Surgery based on his research and clinical work. Dr. de Perrot’s surgical expertise focuses on surgery for end-stage lung diseases such as lung and heart-lung transplantation as well as pulmonary endarterectomy for chronic thromboembolic pulmonary hypertension. He is also the Head of the Toronto Mesothelioma Program and is involved in basic science research, new treatment with immunotherapy and combined modality therapy. In this episode, Dr. de Perrot discusses the importance of early diagnosis in CTEPH patients.

Sanjay Mehta, MD, FRCPC, FCCP, is PHA Canada’s Chair. He is additionally Professor of Medicine at the University of Western Ontario, and Director of the Southwest Ontario Pulmonary Hypertension Clinic at the London Health Sciences Center in London, Canada. He is also Chair of the Pulmonary Vascular Disease Committee of the Canadian Thoracic Society. Dr. Mehta has been caring for patients with PH and doing research in PH since 1989. In this episode, Dr. Mehta discusses the importance of early diagnosis.

Pediatric PH caregiver Shannon Reitor discusses her son Adam’s pulmonary hypertension diagnosis. Shannon details lobbying the Canadian government, the challenge of navigating side-effects of unapproved treatments for children with PH and how Adam became the first child in Canada to go on IV therapy.

Sam Bowker is a pulmonary hypertension patient on triple therapy from Canada. Ken Porter is her partner and caregiver. They discuss Sam’s diagnosis and creative ways they work together to manage her PH treatment regimen.

Canadian Pulmonary Hypertension Caregiver Darren Dempsey discusses the impact rare disease has had on his family and how stress impacts the entire family.

Sanjay Mehta, MD, FRCPC, FCCP, is PHA Canada’s Chair. He is additionally Professor of Medicine at the University of Western Ontario, and Director of the Southwest Ontario Pulmonary Hypertension Clinic at the London Health Sciences Center in London, Canada. He is also Chair of the Pulmonary Vascular Disease Committee of the Canadian Thoracic Society. Dr. Mehta has been caring for patients with PH and doing research in PH since 1989. In this episode, Dr. Mehta discusses PHA Canada’s 10 Year Anniversary.

Dr. Bernard Thébaud is a clinician-scientist recruited to Ottawa from Edmonton in 2012 to accelerate the translation of stem cell-based therapies for lung diseases. Dr. Thébaud is a senior scientist with the Ottawa Hospital Research Institute (OHRI) and Children’s Hospital of Eastern Ontario Research Institute (CHEO RI), and a neonatologist with the Children’s Hospital of Eastern Ontario (CHEO), where he provides care to critically ill newborns. In this episode Dr. Thébaud discusses the importance of early detection and novel approaches to pediatric PH research efforts.

Canadian Nicole Dempsey is an awareness ambassador for PHA Canada. Diagnosed with pulmonary hypertension only a few years ago, Nicole describes the road that led to her PH diagnosis and how this rare disease impacts her family life and parenting.