Each member of your healthcare team plays an important role in helping you to navigate the challenges of diagnosing, treating and self-managing your condition. The severity of your Pulmonary Arterial Hypertension (PAH), your treatment plan and your individual needs will be unique so the types of health professionals in your treating team may vary and change along the way.
You may have a range of health professionals assisting, specialising in different treatment aspects. Among those on your team may be:
PAH specialist: A PAH specialist is a doctor who has specially trained in diagnosis, treatment and management of PAH. Most of these are pulmonologists (lung doctors) or cardiologists (heart doctors).
PAH nurses: A PAH nurse is a nurse specially trained in lung disease who can offer invaluable assistance with treatment information, advice for managing side effects and contact details for other support services.
Social workers: Living with a rare lung disease such as PAH can be overwhelming and isolating. It’s just as important to look after your mental wellbeing as it is to look after your physical health to ensure you’re cognitively, emotionally and socially healthy. A social worker can refer you to counselling and targeted therapeutic services, such as seeing a psychologist, as well as other services for financial help, education and resources.
Psychologist: A psychologist works with you to explore your thoughts and behaviours and helps you to develop a plan to manage emotional distress, anxiety, stress and improve mental health and wellbeing.
Pastoral and spiritual/religious care: A pastor or spiritual leader can assist with emotional wellbeing and community support, as well as spiritual and religious support.
Dietitians: A dietitian provides valuable advice and strategies for maintaining a healthy body weight plus any other dietary problems. Eating well is especially important for people with lung conditions as foods and fluids contain essential nutrients to help prevent infections and keep your lungs healthy.
Physiotherapists: A physiotherapist uses physical techniques to help improve movement, reduce pain or stiffness and increase quality of life. They can tailor exercise programs for your lifestyle and personal situation. We encourage you to seek guidance from someone familiar with PAH. For recommendations, ask your treating centre or contact our freecall Information and Support Centre via 1800 654 301.
Occupational therapists: An occupational therapist can advise you on what equipment you can use at home to make things easier.
Having regular contact with your healthcare team will help you to stay in control of your symptoms. You should go to your appointments even if you are feeling well. You can talk to your healthcare team about:
- Changes in your symptoms, such as new chest pain with exercise
- Your medications, including any side effects
- Other conditions you may have and their impact on your health and wellbeing
- Strategies to self-manage your PAH
- Environmental risk factors you may have recently been exposed to such as smoking, dust or fumes.
This information comes from our Living with Pulmonary Arterial Hypertension resource. This booklet contains information for people living with PAH and their carers, on the diagnosis of PAH, self-management and living well.
To access a free, downloadable copy of the booklet, please click here.
If you would like to access a free hard copy of the booklet, please contact our Information and Support centre on 1800 654 301.