Recently diagnosed

Finding out you have pulmonary arterial hypertension (PAH) can feel like a lot to handle. Just remember, that we’re here to help, and you’re not alone. With the right information, treatment, and support, you can live well with PAH.

As you get treatment and manage your PAH, you’ll see many different healthcare professionals. Each of them specialises in different parts of your overall care plan. Staying in touch with your healthcare team will help you stay in control of your symptoms.

You can talk to your healthcare team about:

• Any changes in your symptoms, like new chest pain when you move around
• Your medications, including if you’re having any side effects
• Any other diseases that might affect your PAH
• Things that can help you manage your PAH day to day
• Anything in your surroundings that might be affecting your PAH, like smoke, dust, or fumes.

Getting the most out of your appointments

There are also some simple things you can do to help manage life with PAH.

• Write down questions: Before your appointment, write down any questions you have. It’s easy to forget some of the questions you might have when speaking with a doctor at your appointment.
• Bring someone with you: It can help to bring a partner or family member to your appointment. They can take notes for you or remind you about what a doctor has said. 
• Keep a diary: Before your next appointment, try writing down how you’re feeling each day for a few weeks, especially if your medications have changed.
• List your doctors: Keep a list of all your doctors’ names, phone numbers, and addresses handy.
• List your medications: Keep an up-to-date list of all your medications, vitamins, supplements, and anything else you’re taking. Note how much you take and how often. Sharing this helps your family, specialists, and nurses understand your PAH and treatment better.
• Take medications when travelling: Always take your PAH medications with you when you travel or go to hospital. Stopping your PAH medications suddenly can make your symptoms much worse.
• Attend all of your appointments: Make sure you go to all your specialist appointments. You may need to repeat tests or have a check-up with your doctor before you can continue to receive your PAH medications.

Being diagnosed with PAH is a big thing for anyone to deal with. It’s important to reach out for support to help you manage. You can find support among your healthcare team, health and community services, and your family and friends. If you feel like you need extra help, talk to your doctor about a referral for a support service that’s right for you.