Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 2025

Anna Jeter, is an artist, writer and photographer living in Excelsior, Minnesota, USA. She was diagnosed with pulmonary arterial hypertension at the age of 4 but only received a heart-lung transplant 19 years later, in 2018. In a recent article for Pulmonary Hypertension News she expresses gratitude for surviving long enough to receive the transplant […]

Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 2025 Read Post »

“I had a double lung transplant then won silver”, the incredible journey of Catherine Makin, BBC News, August 22, 2025

On BBC News on 22 August 2025, Emma Stanley tells the incredible story of Catherine Makin, a double lung transplant patient. Catherine Makin, 42, a National Health Service (NHS) clerical worker from Great Harwood, Lancashire, has won 10 medals in swimming and table tennis at the British Transplant Games after receiving a double lung transplant

“I had a double lung transplant then won silver”, the incredible journey of Catherine Makin, BBC News, August 22, 2025 Read Post »

Award-Winning Singer-Songwriter Chloe Temtchine Releases New Song Featuring Hip-Hop Icon Freeway to raise awareness of pulmonary hypertension and organ transplant

Award-winning singer-songwriter Chloe Temtchine has released a new single “Heaven in the Darkest Place” featuring rapper Freeway. The song is inspired by Temtchine’s own near-death experience and life-saving double-lung transplant. Key collaborator: Freeway brings personal significance to the track – he received a kidney transplant in 2019. Broader purpose: The song serves as the official

Award-Winning Singer-Songwriter Chloe Temtchine Releases New Song Featuring Hip-Hop Icon Freeway to raise awareness of pulmonary hypertension and organ transplant Read Post »

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025

In an article for Pulmonary Hypertension News Colleen Steele reflects on her co-experience with her husband, Brian, concerning caregiver stress syndrome, a condition of overwhelming physical, emotional, and mental fatigue, often referred to as caregiver burnout. They describe progressing through three stages of the syndrome. Stage 1 began with their son Cullen’s diagnosis of pulmonary hypertension

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025 Read Post »

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025

Sarah Riggae is a researcher and educator who suffers from Parkinson’s disease,  In a recent article on her blog she defines what is meant by “patient engagement” and distinguishes between “primary” and “secondary” engagement.  Short summary: Primary Patient Engagement focuses on individual patient empowerment in their own healthcare journey. This includes: It’s essentially about patients having

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025 Read Post »

“Beyond Survival: 11 Years, 2 Lung Transplants, and the Quiet Miracle of Breathing”, Alena Adarbehova

Alena’s journey transcends ordinary resilience. After battling pulmonary hypertension for a decade, surviving two double lung transplants, and undergoing over 200 photopheresis sessions, she now embraces life with just 34% lung function—yet lives it fully. Her story bridges cultures, identities, and the profound gift of donated organs. As she marks 11 years since her first

“Beyond Survival: 11 Years, 2 Lung Transplants, and the Quiet Miracle of Breathing”, Alena Adarbehova Read Post »

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families

This week (12th-18th May) is Mental Health Awareness Week in the UK. Over the years the UK pulmonary hypertension association, PHA UK, has built up a range of services and resources to help patients that are struggling with anxiety, depression, or general mental wellbeing, you can find all the details at here.

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families Read Post »

How tech improvements can benefit the chronic illness community, a testimony from Anna Jeter for Pulmonary Hypertension News, March 17, 2025

Anna Jeter, author of a recent article for Pulmonary Hypertension News, underwent a heart and lung transplant in 2018, and has since embraced smartwatch technology, and discovered valuable health management applications: Her smartwatch and phone helps track: Additional technology benefits include: Anna says she is thankful to live in a time of technological advancement that

How tech improvements can benefit the chronic illness community, a testimony from Anna Jeter for Pulmonary Hypertension News, March 17, 2025 Read Post »

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out!

The latest issue of the quarterly Pathlight magazine of the US Pulmonary Hypertension Association, the PHA, celebrates pulmonary hypertension heroes. As National Volunteer Month approaches, the association acknowledges the people who make this organization a success. This issue also includes articles about imaging innovations, managing medication side effects and swimming with subcutaneous therapy.  To receive

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out! Read Post »

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025

A study published on March 18 2025 in Pulmonary Therapy provides a comprehensive view of pulmonary hypertension in Japan through a nationwide survey of 160 patients (119 with pulmonary arterial hypertension (PAH) and 41 with chronic thromboembolic pulmonary hypertension (CTEPH) and 211 physicians. We are particularly pleased to publish this article as one of the

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025 Read Post »

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog

Maleen Fischer, whose “blue lips” in infancy were dismissed by doctors for nearly four years before receiving a diagnosis of pulmonary arterial hypertension at age four. In a recent article for Cambridge Network News and in a blog for electronRx she shares how despite years on continuous IV medication and isolation during childhood and adolescence,

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog Read Post »

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025

Hall Skaara is a pulmonary arterial hypertension patient. His article about life as a patient has been published in the International Journal of Cardiology: Congenital Heart Disease. Hall was diagnosed with idiopathic pulmonary hypertension after cardiac issues and two ablations, but has transformed his diagnosis into an opportunity to help others. Despite physical limitations, he

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025 Read Post »

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025

This article by Jen Cueva, a pulmonary hypertension patient, reflects on the challenges of managing setbacks, particularly for those with pulmonary arterial hypertension and other chronic conditions, emphasizing that setbacks are not failures but may represent opportunities to adjust and persevere. It highlights the importance of self-compassion, rest, and leaning on support systems to navigate

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025 Read Post »

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025

Natalia Maeva, a patient diagnosed with pulmonary arterial hypertension in 2009, shares a deeply personal account of living with the condition, focusing particularly on the harrowing experience of dyspnoea crises for Breathe. Natalia says that these crises, characterized by a visceral feeling of suffocation, fundamentally transformed her life, forcing her to recalculate every action and

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025 Read Post »

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024

During a hospital stay described in her December 4, 2024 article for Pulmonary Hypertension News, Jen Cueva, a pulmonary hypertension patient, discovered potentially dangerous errors in her medication records. Her experience, detailed in “Organizing health information is crucial to rare disease management,” demonstrates why maintaining accurate, up-to-date medication lists is essential for patient safety, particularly

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024 Read Post »

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024

A very touching and inspiring article by Jen Cueva was published in a recent edition of Pulmonary Hypertension News. This piece beautifully emphasizes gratitude as a transformative practice, even amid adversity. Jen effectively balances acknowledgment of the hardships of living with PH with a constructive approach to fostering positivity. The actionable advice—such as empathetic listening,

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024 Read Post »

How music can affect intimacy and sex while living with pulmonary hypertension, Jen Cueva, Pulmonary Hypertension News, September 18, 2024

Jen Cueva, who is a pulmonary arterial hypertension patient and former nurse, serves as a forum moderator for “Pulmonary Hypertension News”, where she has weekly column. In an article published on September 18, 2024, Jen addressed the very important but little talked about issue of intimacy and sexuality in pulmonary hypertension. Companionship and physical intimacy

How music can affect intimacy and sex while living with pulmonary hypertension, Jen Cueva, Pulmonary Hypertension News, September 18, 2024 Read Post »

New European Lung Foundation (ELF) and ERN-LUNG booklet highlights patient perspectives on lung transplantation

During the European Respiratory Society 2024 Congress in Vienna, which was held 7-11 September 2024, the European Lung Foundation and ERN-LUNG lung transplantation group presented a new booklet sharing the patient perspective on transplantation. The booklet features an introduction by the European Lung Foundatiion Chair Dimitris Kontopidis and testimonials from lung transplant patients Natalia Maeva

New European Lung Foundation (ELF) and ERN-LUNG booklet highlights patient perspectives on lung transplantation Read Post »

“Make-A-Wish” grants a young Dutch woman waiting for a lung transplant a dream day with her family

Lot is a vibrant young woman with an incredibly positive outlook on life, despite the fact that her daily routine is heavily influenced by her health. Born with a congenital heart defect, Lot was diagnosed with pulmonary arterial hypertension (PAH) at just six years old. Reflecting on her wait for donor lungs, Lot shares: “About

“Make-A-Wish” grants a young Dutch woman waiting for a lung transplant a dream day with her family Read Post »

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