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Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ or by calling 086 871 5264

Tip of the week 2017


1) Keep a diary for 2017
Happy New Year! If you're thinking about a new year’s resolution, why not commit to start a diary for 2017? A diary is very useful for recording all your appointments, correspondence, and things you need to do. Its also worthwhile to keep a record of your general health and wellbeing. Write down how you’re feeling, your symptoms and how you are coping with your daily challenges and triumphs including your progress with taking exercise.

2)  Choose happiness! Smile and laugh as often as you can even when life is difficult. These simple acts release feel-good chemicals that will help you feel better about life. Good humour and smiles are contagious and will help you connect with others!

3) Plain English
Always ask your doctor and other healthcare professionals to use 'plain English' if they use medical terms or words that you do not understand.
Click the link to read more about some of the medical terms that are used in the management of lung fibrosis.

4) Contact numbers in case of emergency

Prepare a list of all your emergency contact telephone numbers including your family contacts, GP surgery, local hospital, pharmacy and your oxygen supply company. Keep this list somewhere prominent and easy to find in your home. Its also a good idea to keep a copy of the list in your wallet , purse and oxygen carry case, and give copy to your spouse, partner or companion.
5)  Pulse oximeter readings
PF causes patients to become breathless and have low blood oxygen levels, especially during exercise or any activity that requires effort (exertion).
If your GP is going to measure your blood oxygen levels (with a machine called a pulse oximeter), you should march on the spot for a while or walk up and down the corridor before the reading is taken. If you have been sitting in the waiting room, your pulse oximter reading will only reflect your resting state and there may not be a significant change in oxygen levels.
It is more important and useful to have a reading that accurately reflects how your body reacts to exertion. Don't be afraid to tell your doctor this.
6)  Exercise, exercise, exercise
Exercise is as important as medication. As well as following your doctor’s instructions when taking medicine, you should prioritise exercise. Daily exercise will help to keep your muscles strong and your lungs working to the best of their capacity. The ILFA 2000 Steps a Day exercise challenge and Exercise DVD are designed specifically for lung fibrosis patients taking their limitations into account. Email or call 086 871 5264 to request your exercise pack

 7)  Prioritise tasks 
Be flexible and realistic with your time. Prioritise the most important tasks. Make a “To Do” list and group similar activities together, for example, telephone calls, paying your bills, attending to letters and correspondence. You'll feel better when you see the progress you make as you tick these items off your list.

8) Palliative care
Don't be afraid if your doctor or nurse asks to discuss palliative care with you if your health is getting worse. Palliative care is a medical specialty that focuses on relieving your symptoms, particularly breathlessness and anxiety. Palliative care is often wrongly associated with caring only for cancer patients at the‘end of life’. In fact, palliative care can be useful at any time for IPF patients and can help improve your symptoms, well being and quality of life as IPF progresses.

9)  Take 5 minutes for yourself
During the day, take 5-10 minutes of quiet quality time for yourself. Sit in a comfortable chair or lie on your bed and concentrate on your breathing and relax. When you feel refreshed, get up and carry on with your day.

10)  Thinking of a holiday?
If you are planning a holiday, remember to let your doctor, respiratory nurse and oxygen company know well in advance. It is important to allow plenty of time in order to get the "all clear" from your doctor and to make all the necessary travel arrangements. If you are booking a flight, you should let your airline know if you will need oxygen for traveling and its a good idea to book a seat near the toilet. As the airplane climbs higher, the air pressure changes and air oxygen level falls which can affect your breathing, especially if you need to move around the plane. Turn up your oxygen if you are struggling with breathlessness and lower it again when your breathing has settled.
11)  Power nap
Take forty winks. Why not try to take a power nap for 20 minutes during the day. Try to nap before 4pm and always set your alarm clock for 20 minutes to avoid over sleeping. Short power naps can help you relax, leave you feeling refreshed and revitalised and could result in increased energy.
12) Cleaning your nasal cannulae
If you are on oxygen, it is important to clean your nasal cannulae daily with a damp cloth. You should not use kitchen wipes or baby wipes as they contain chemicals that can affect the tubing.
You should replace your nasal prongs every month or when they become dry and hard, and after a respiratory infection. Contact your oxygen supply company if you have any questions.

13) Plan in advance
When organising a trip away, it is important to plan your travel arrangements and accomodation in advance. If travelling by air, rail or coach, let the travel company know about your medical needs (for example, oxygen equipment, extra power sockets, wheelchair, seat close to the bathroom). Hotels can provide larger rooms or access rooms for people with medical needs. Ask for a room that has a walk in shower rather than a bath if this would be easier for you, and a nearby lift. The staff will do everything they can to make your stay as comfortable and safe as possible.

14) Request a medication review
Ask your Doctor for a medicine review every 6-12 months, especially if you take prescribed medicines for different conditions. Your Doctor may change your prescription or introduce new medicines. Tell your Doctor if you also take other non-prescription medicine including vitamins, supplements and herbal remedies. Remember to tell your Doctor about any side effects you have.

15) Practice gratitude
Practice gratitude and feel the positive benefits it has to offer. It is important to be grateful but also to express your gratitude in order for it to be effective. Tell someone you know something you like, admire, or appreciate about them. You will feel just as great as they will!

16) Tests

If your Doctor tells you that you need to have a test you should ask;
- What is the name of the test?
- Why is the test needed?
- What the test involves?
- Do you need to prepare for the test?
- Are there side effects?
- How long will it take to recover?
- Will you need to stay in hospital and for how long?
- Do you need to have somebody to accompany you?
- When and how will you get the results?
- What do abnormal results mean?
- Is there an alternative test ?

17)  Summertime
Now that summer is here, try to ake advantage of the sunshine and brighter days. Vitamin D is known as the 'sunshine vitamin' and it is essential for healthy bones. Step outside, stretch your muscles and get a short burst of safe sun exposure to help with Vitamin D production.

18)  Ask for help
Don't be afraid to ask for help. You will be surprised at how keen people are to help when they are asked, especially with practical things like grocery shopping, transport, housework and gardening chores. Asking for and accepting help from others will really ease the burden on you.