Holistic care for Pulmonary Arterial Hypertension (PAH)

In this video Rheumatologist Professor Susanna Proudman explains what holistic care is, what you should expect from your ongoing care and what steps you can take if you feel you’re not getting the most out of your treatment and care. The Pulmonary Arterial Hypertension (PAH) Patient Charter outlines the standards of holistic care that you should expect to receive.

Pulmonary hypertension (PH) care involves a team of healthcare professionals working together to provide the best possible care and outcomes. Holistic care means considering every aspect of your disease and personal needs, placing you at the centre of the management plan. This approach includes listening to your preferences and making shared decisions about your therapy. Your healthcare team will guide you to the right information and support services for you and your family.

Timely diagnosis is crucial for managing PH effectively. If you experience unexplained breathlessness, work with your doctors to investigate further.

If diagnosed with PH, you will likely be referred to a specialist centre where a multidisciplinary team, including cardiologists, respiratory physicians, and possibly rheumatologists, will manage your care. Nurses play a vital role in supporting you through therapy and responding to changes in your symptoms. Other health professionals, such as physiotherapists and psychologists, may also be involved to help with exercise and coping with the stress of the diagnosis.

Specific advice on nutrition, exercise, and other lifestyle factors is important. For example, avoiding iron deficiency and staying well-nourished are crucial. Exercise, supported by pulmonary rehabilitation, can improve your capacity and well-being. If you wish to conceive, careful planning is necessary, and contraception may be an important topic to discuss.

Living with PH may impact your career choices, financial planning, and travel. Psychological support is often needed to cope with the chronic nature of the disease. Practical issues, such as eligibility for social benefits like disability support pensions or the NDIS, should also be considered. At some stage, discussions about palliative care may be necessary to provide additional support if your condition deteriorates.