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 »

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship

Natalia Maeva, a dedicated pulmonary hypertension advocate and double lung transplant recipient, has accomplished an incredible milestone as part of the Bulgarian transplant team. Eight years after her life-saving operation, she won a gold medal in badminton at the European Transplant Sports Championship in Lisbon, Portugal, becoming the European champion in the 50-59 age category.

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship Read Post »

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor

Chloe Temtchine is an award-winning singer, songwriter, speaker, and the creator of “Super Brave,” an interview series that features both kids and adults who are living with a chronic illness. Her dedication to the cause includes “The Chloe Temtchine Foundation” (TCTF) which supports those living with pulmonary arterial hypertension and other serious conditions. Through TCTF,

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor Read Post »

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension!

A recent study suggests that Italian composer Antonio Vivaldi, known for his musical genius, may have suffered from pulmonary hypertension. The study was led by the esteemed Italian oncologist, and accomplished musician, Prof. Giuseppe Gullo, and was published in Studi Vivaldiani, the annual journal of the Istituto Italiano Antonio Vivaldi (founded in 1947), which has

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension! Read Post »

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out!

The patient booklet on lung transplant by AIPI, Italian Pulmonary Hypertension publication “Guida al Trapianto di polmoni” has been adapted and translated into English by Pisana Ferrari, President of AIPI. You can now translate the entire booklet directly from here using the orange button at the bottom of the page: 40 languages are currently available

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out! Read Post »

Anne-Marie Amilhat, one of the world’s longest-living heart-lung transplant recipients (36 years!) was among the 11,000 people who carried the Olympic flame from Athens to Paris

Anne-Marie Amilhat, who is one of the world’s longest-living heart-lung transplant recipients (36 years post surgery!) was among the 11,000 people who carried the Olympic flame from Athens to Paris. On May 17th Anne-Marie carried the torch between Toulouse and Auch. The news was reported in the April 2024 edition of the French pulmonary hypertension

Anne-Marie Amilhat, one of the world’s longest-living heart-lung transplant recipients (36 years!) was among the 11,000 people who carried the Olympic flame from Athens to Paris Read Post »

Former pulmonary arterial hypertension patient shares her transplant journey and stresses the importance of education, Pulmonary Hypertension News, May 16 2024

Anna Jeter is an artist and writer living in Excelsior, Minnesota. She was diagnosed with pulmonary arterial hypertension in 1999 at the age of 4 and received a lifesaving heart-lung transplant in 2018. In an article published recently in Pulmonary Hypertension News, Anna encourages other pulmonary arterial hypertension patients to conduct thorough research and familiarize

Former pulmonary arterial hypertension patient shares her transplant journey and stresses the importance of education, Pulmonary Hypertension News, May 16 2024 Read Post »

The remarkable journey of two individuals with hand transplants, Theo Kelz and Vasyly Rohovyy, testifies to the huge progress made in the field in past decades

Two exceptional people feature in this photo: on the left Mr. Theo Kelz, the first patient to have a hand transplant in Austria in the year 2000, and on the right Mr Vasyly Rohovyy, who had both hands transplanted in Vienna in 2006.  The photo was taken under the portrait of Professor Raimond Margraiter, the

The remarkable journey of two individuals with hand transplants, Theo Kelz and Vasyly Rohovyy, testifies to the huge progress made in the field in past decades Read Post »

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