Living with Idiopathic Pulmonary Fibrosis

There are a variety of ways that IPF sufferers can maintain or improve their quality of life when living with the disease.

Stay in shape:
An inactive lifestyle can have the most damaging effect of lung disease with its sensation of “breathlessness”. For many patients, everyday activities such as bathing and dressing can cause overwhelming fatigue. Feeling breathless can also bring on panic attacks and distress. People with chronic respiratory problems may limit physical activities to help avoid shortness of breath – either consciously or subconsciously. However, lack of exercise works against you. If you don’t remain active your muscles weaken and become less efficient. Through regular exercise muscles become stronger and more resistant to fatigue. With practice and training you can learn to perform tasks more efficiently, which means you use less oxygen carrying them out. A formal pulmonary rehabilitation programme may be preferred because it allows for observation during exercise and can be tailored to your specific needs.

Eat well:
A nutritious diet includes a variety of fruit, vegetables and whole grains. It also includes lean meats, poultry, fish, beans, and dairy products. Eating smaller but more frequent meals may relieve stomach fullness, which can make it hard to breathe. As the disease progresses, breathlessness can make swallowing difficult and it may be necessary to eat a very soft diet in small but frequent portions. Dietitian's can give further guidelines for healthy eating.

Get plenty of rest:
As a rule of thumb, aim for eight hours of good quality rest every night.

Stop smoking:
Avoiding environmental irritants, like cigarette smoke, is a good way to prevent further damage to your lungs. Tobacco smoking is addictive, if you smoke seek help from your GP. Second-hand smoke can be as harmful as smoking yourself, so it’s important to ask family and friends to refrain from smoking around you.

Participate in your health care:
Remember you are part of “your” health care team. As a member of the team you have a responsibility to do your part. Ensure you ask your own questions. Bring someone with you to your appointments and prepare a list of questions you need answered. Ask for referrals to other health team workers who may be able to help you with daily living activities, such as physiotherapists, occupational therapists, dieticians, and social workers.

Get immunised against influenza and pneumococcus:
Immunisation will protect you against infections that can be particularly severe for people suffering from lung disease.

Manage your coughing symptoms:
A nagging, dry cough is exhausting. Although a cough is often caused by IPF, there are other conditions which can make it worse, such as a postnasal drip, allergies, and smoking. There are a number of palliative therapies for a troublesome cough and you should discuss these with your doctor.

Learn and practice relaxation techniques:
When you are physically and emotionally relaxed, you use less oxygen, as your muscles aren't overworked. Learning relaxation techniques can help to manage the panic that often accompanies shortness of breath. Anxiety and depression are common in people with chronic breathing disorders. Many people fear losing the ability to function and becoming dependent on others. The restriction on activity due to breathlessness can sometimes lead to isolating yourself from family and friends, contributing to the depression.

Keep a positive attitude:
You may not be able to control the course of your illness, but you can control your attitude and spirit every single day. Do you want to be sad, glad, or mad? Pick one. Do you want to be positive or negative? Choose one. A positive attitude may not solve all your problems, but it will certainly make a difference in how you cope with having IPF.

Watch the video - Idiopathic Pulmonary Fibrosis in Daily Life

Click here
to view stories from those with the condition.

“A strong positive mental attitude will create more miracles than any wonder drug.” – Patricia Neal.

As IPF Progresses

There may be times when your symptoms get worse and breathing becomes more difficult, like when you have a cold or chest infection. You may experience more mucus secretions, your sleep may be interrupted, and daily activities may become more difficult with increased breathlessness.

It is good to be prepared for these situations. Discuss a plan with a doctor or chest specialist and get clear guidelines as to when and how to seek help. In more severe situations, you may need to be admitted to hospital for more intensive treatment and skilled care. Admission to hospital doesn’t need to be a frightening experience. It may be an opportunity to meet members of the respiratory team and other health care team members. Your medications will be reviewed and you may be offered support to cope with daily living. Caring staff understand how distressing it is to be short of breath. They will adapt a care plan around your specific needs. A few days in hospital may sometimes be all it takes to get back to acceptable and manageable energy levels to live in a home environment.

How the community health team can help

Having support from a team of different health professionals can help to make things easier, consider involving the below to help:

  • Physiotherapists
  • Occupational Therapists
  • Social Workers
  • Dietitians
  • Clinical psychologists

Click here to download a factsheet on how health professionals can support you.

Living with a Terminal Illness

When faced with a terminal illness, life is about living every moment and making the most of every precious day. However, dying is a big part of life. Talking about it doesn’t bring it closer – it’s about planning for life. The purpose of talking is to help people die the way they wish. The best way to approach this is holistically: taking into account the physical, emotional, and spiritual aspects of the person’s wellbeing and focusing on the patient and their family, which serve as a framework for palliative care.

Everybody, whatever their age or state of health, needs to talk about their wishes towards the end of their life with their friends, family and loved ones. The earlier we talk about it the easier it is emotionally and practically for everyone. Not talking about a person’s wishes towards the end of their lives with friends, family and loved ones can mean that they may not get what they want or die where they want. They might not have expressed their wishes about their care or funeral, or have made a will. They may simply not have said what they wanted to say.

The following are some subjects that family may like to discuss with loved ones:

  • The type of care they would like towards the end of their life,
  • Where they would like to die,
  • Whether they want to be resuscitated or not,
  • Funeral arrangements,
  • Care of dependants,
  • How they can save other lives through organ donation,
  • How they’d like to be remembered,
  • Whether they have any particular worries they would like to discuss about being ill and dying,
  • What they would like people to know before they die.

More information can be found at the English website Dying Matters.

Reference and reading material

  • Dying – A New Zealand Guide for the Journey by Sue Wood and Peter FoxThis book has been written to help anyone who is dying, and their family and carers. What the dying person can expect, what others have found important to do and generally how to respond positively and practically to the challenges of this difficult journey.
  • A good day to Die by Lisa Birnie A book that tells stories of the dying, their families and friends, and the health professionals who care for all of them. And about how palliative care can give us the freedom and love when we are our most vulnerable.
  • Your Patient With IPF - Presented at New Zealand Respiratory Conference 2017 by Ben Brockway, Consultant and Senior Lecturer in Respiratory Medicine - University of Otago Dunedin of Medicine.
We hope this information is a valuable resource to help navigate some of the uncertainty that IPF brings to people with the disease, as well as their families and friends. We wish you all the best for your journey.

A huge thank you to Ailsa Pitcher, who started the IPF support group after her loving husband Robin passed away from the condition in 2010. Throughout Robin’s time with the condition, Ailsa saw a need for support and information for those living with this condition in New Zealand, and a need for further information and knowledge for health professionals too, which motivated her to set up a website to provide this. Ailsa asked the Foundation to take over her work for her, by providing this information on our website and helping to create awareness about the condition.