Living with pulmonary hypertension
Over the past 25-30 years, remarkable advancements have transformed the landscape of pulmonary hypertension. These advancements encompass a deeper comprehension of the disease, the approval of novel therapies, surgical breakthroughs, the establishment of expert centres, the development of clinical guidelines, and more effective disease management strategies. Consequently, there has been notable progress in symptom control and slowing the progression of the disease. Nevertheless, living with pulmonary hypertension continues to pose challenges for patients, their families, and caregivers, encompassing physical, practical, psychological, and social dimensions. Achieving optimal management of pulmonary hypertension necessitates a comprehensive and coordinated approach, involving a multidisciplinary team of healthcare professionals and specialists such as physicians, nurses, social workers, psychologists, and patient organisations.
Difficulties in reaching a diagnosis
The patient journey, from first symptoms to diagnosis, can often be delayed, as pulmonary arterial hypertension is a rare disease with non-specific symptoms which may be mistaken for other common illnesses. Patients are often not aware of the existence of the condition and may not associate the initial symptoms with a potentially fatal disease. Lack of knowledge among the general public and health care professionals has been identified as a cause for major concern. Early detection and diagnosis are key to improving patient outcomes.
Everyday life challenges
Living with pulmonary hypertension transforms even the simplest daily tasks into challenges. As the disease progresses, activities most take for granted—climbing stairs, carrying groceries, bending to pick something up, or holding a child—can leave patients breathless with racing hearts. The impact extends far beyond physical limitations. Many patients struggle to maintain employment or manage family responsibilities. Financial stability and life plans may require significant adjustments as the condition advances and limitations become increasingly severe.
Mental health issues
The mental health burden is equally significant. Patients live with constant uncertainty about their future while gradually losing independence. This psychological strain is compounded by medication side effects and the demands of ongoing medical monitoring—frequently requiring travel for specialized care and check-ups. The pulmonary hypertension journey represents a complex balance of managing both physical symptoms and emotional wellbeing while adapting to a new normal that continues to evolve with the disease. A 2021 study which included 217 patients with pulmonary arterial hypertension, found that over one third had mental health issues, mainly depressive disorder and panic disorder, exceeding the prevalence of these disorders in the general population. The study found that these mental health issues had a substantial impact on quality of life.
Role of patient associations
Patient associations provide invaluable support to patients and their families in many different ways including practical and emotional support and the provision of timely and easy-to-understand information. They also play a vital role in raising awareness of the disease and advocating for patient rights.
Patient and carer testimonials
Patient testimonials are a powerful tool in raising awareness and in gaining a true understanding of the impact of the condition on people’s lives. Different patients choose to live with the same condition in very different ways, of course, so that each story is unique and special. A number of patient stories has been uploaded to our PH Stories section.
Sources
“My life with pulmonary arterial hypertension: a patient perspective”, Hall Skaara, Pisana Ferrari, publication date Dec 17, 2019, European Heart Journal Supplements, Volume 21, Issue Supplement_K, Pages K54–K59
“Patient engagement and self-management in pulmonary arterial hypertension”,
“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”,
“Prevalence of Mental Disorders and Impact on Quality of Life in Patients With Pulmonary Arterial Hypertension”, Karen M. Olsson, Tanja Meltendorf, Jan Fuge, Jan C. Kamp, Da-Hee Park, Manuel J. Richter, Henning Gall, Hossein A. Ghofrani, Pisana Ferrari, Ralf Schmiedel, Hans-Dieter Kulla, Ivo Heitland, Nicole Lepsy, Madelaine-Rachel Dering, Marius M. Hoeper and Kai G. Kah, Frontiers in Psychiatry, 31 May 2021