Being diagnosed with Pulmonary Fibrosis can be a frightening experience. It is, therefore, important to obtain as much information as possible from your medical team.
This information will help you to live better with your diagnosis and help you understand what it means.
To help you prepare, here are some hints & tips:
Consultations with your medical team are a great opportunity to ask questions to help you understand and manage your pulmonary fibrosis.
Making the most of your consultation:
You may be a little nervous and even frightened when talking to your medical team at the hospital, so do some preparation.
- It is a good idea to take someone with you who can help and support you, take a family member or friend. Discuss your concerns with them before your appointment and ask for their support.
- You or the person with you could go armed with a notebook and pen to keep notes of what is said. If you don’t understand any medical terms, ask for an explanation.
- Most of all please remember that you are entitled to have your questions answered fully and to be given time to take it all in.
You should try to leave appointments with a full understanding of your diagnosis and as much information as possible.
Ask if there are any leaflets or handout information that you can take away.
Suggested Questions for your medical team:
Before diagnosis:
- What tests will I need?
- What will the tests involve?
- Will I have to stay in hospital?
- How long will it take to get the results?
After diagnosis:
- Do you know the cause of my pulmonary fibrosis?
- Do you know how advanced my fibrosis is?
- What treatments can I have?
- Who will look after me?
- Will I get better?
- Is there a cure for pulmonary fibrosis?
- Could I have a lung transplant?
Coping with pulmonary fibrosis:
How can I help myself and my family?
You can get more information about pulmonary fibrosis and how to live better with your diagnosis by getting involved in Support Group Meetings and other activities run by Pulmonary Fibrosis NI (PFNI).
You could also visit the PFNI website: https://www.pulmonaryfibrosisni.co.uk
Is there any support available for my family? Yes through (PFNI).
Can I access respite with my family? Yes discuss with PFNI.
Ask your Specialist Respiratory Nurse if there are any pulmonary rehabilitation classes you could be referred to?