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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 support group 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 2018


1) Keep a diary for 2018
Happy New Year from ILFA! If you're thinking about a new year’s resolution, why not commit to keeping a diary for 2018? 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 and reaching your daily step count.

2) Have a plan in place
Speak with your healthcare team to decide what actions you should take if you feel unwell in the future. Having a formal health care plan in place means that you and your family will know what you need to do and who to contact when you feel unwel

3) Balance your energy levels
Fatigue and extreme tiredness are common symptoms for many patients with lung fibrosis. Tiredness can affect your energy levels and ability to carry out your daily activities. Try to balance your activities and energy levels by planning ahead, doing things at your own pace, taking a short rest when needed, and prioritising the things that are important to you and those you really want to do.

4) Relax your muscles to help your breathing
When you become short of breath, the muscles in your
shoulders, neck and chest can become tense and use up a lot of energy, making your breathless worse.
When you become short of breath, stop what you are doing and find a comfortable position that helps you to take control and breathe easier. Concentrate on relaxing the parts of your body that are tense, for example, unclench your jaw, relax your neck, and let your shoulders relax and drop down.

5) Using oxygen while bathing
Showering and getting dressed can be very tiring activities for people with lung fibrosis. If you are on oxygen, don't be afraid to use it while showering or bathing. If necessary, turn your oxygen up to help you cope with extra breathlessness when washing and changing. Once your breathing has settled, turn your oxygen back to its normal level. 

6) Ready and able
If you have a job to do, that you simply can't face today, why not put it off until tomorrow. Don't stress about it, instead put it out of your mind and tackle it when you are ready and feel up to the task. 

7) 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.

8)  Fatigue
Fatigue is common and debilitating symptom for patients with IPF. Fatigue is caused by a combination of factors including low oxygen saturations, low iron concentrations, low blood sugar, low haemoglobin levels in your blood and poor thyroid function. Ask you doctor to check your bloods if you suffer with fatigue.

9)  Stay warm, stay safe, keep moving
There is a severe cold spell forecast for this week - temperatures are expected to plummet and there is a risk of heavy snowfall. Remember to stay warm, keep moving, keep hydrated and if possible remain indoors and avoid unnecessary journeys. If you must go outdoors, wrap up well, wear a scarf around your mouth, wear mittens over a pair of gloves and wear non-slip shoes. It is a good idea to bring extra oxygen if you have to travel by road, just in case there are unexpected traffic delays.
For more useful information please see

10)  Something to look forward to
Have something to look forward to in the near future. It doesn't have to be a major event, something small and simple that excites you and makes you happy is just as beneficial. For example a new film coming to the cinema or your favourite film being shown again on tv, a new book from your favourite author, meeting up with a friend, a family get together or a drive or walk in the country. Being optimistic and excited about your plans can help reduce any health fears, axieties and stress you may have.    

11)  Taking tablets
Sometimes swallowing large tablets or capsules and having to take large numbers of pills can cause problems for patients. It is important to take your time and be patient when taking your medicine. First take a few deep breaths to relax and then swallow your pills slowly one at a time. Have a glass of water to hand. If you find it difficult to swallow pills, why not try taking them in a spoonful of yoghurt.

12) Plan in advance
When organising a trip away, it is important to plan your journey and stay as far in advance as possible. 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.

13) Lung Function Tests

Here's some advice for when you are preparing for pulmonary function tests;
• Make sure you are well hydrated
• Do not take any inhalers before your tests
• Let the respiratory physiologist know if you have recently had a chest infection.
• Tell the staff about any changes to your regular medication.
• Use your oxygen as normal
• Plan your journey to the hospital in advance to avoid having to rush
• Wear loose clothing and avoid jewellery around your neck.
• Try to relax
• And most importantly ... WORK HARD! Give the tests everything you've got especially when the staff are shouting "Keep going, keep going, keep going!"

14) Good communication is essential in IPF care
Communication is an active process and the more you put in, the more you will benefit.

- Work in partnership with your healthcare team and be honest and open about how you are feeling.
- If you don’t have a good rapport with your clinician, it is ok to ask to see someone else.
- Prepare for your hospital appointments by writing down any questions you have.

- If you are unsure about what your clinician has said, ask them to repeat the information in a different way, ask them to draw it or write it down. 

15)  Pulmonary Rehabilitation

Pulmonary rehabilitation programmes can help IPF patients improve their exercise tolerance and lung function. These classes are supervised by healthcare professionals and involve exercise training, breathing techniques, education about life style choices and advice on quality of life for patients with chronic lung conditions. Ask your doctor to refer you to a pulmonary rehabilitation class in your area. If local pulmonary rehabilitation classes are not available, why not try the ILFA 2000 Steps programme and exercise DVD? To order your 2000 Steps a Day walking pack call 086 871 5264 or email
16) Thinking of a holiday?
If you are planning a holiday, you should let your doctor 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. Happy holidays!
17)  Believe in yourself
Don’t let lung fibrosis define you. Believe in yourself and be proud of who you are. Be kind to yourself and adopt a positive outlook to help you to cope better with stressful situations. Focus on what you can do rather than what you can’t do.
18)  Be positive
Life is not always how we would like it to be but it is important to make the best of whatever life we have. Focus on all the positive aspects of your life, your family, friends, the opportunities you have had. Be grateful for all the good things you have and move forward with a positive attitude to face whatever challenges lie ahead.
19)  Oxygen for bathing and showering
Showering and getting dressed can be very tiring activities for people with lung fibrosis. If you are on oxygen, don't be afraid to use it while showering or bathing. If necessary, turn your oxygen up to help you cope with extra breathlessness when washing and changing. Once your breathing has settled, turn your oxygen back to its normal level.
20)  Make a change today

Decide today to make a positive change in your daily life by trying to become more active. The idea of exercise can be scary for patients experiencing shortness of breath or a debilitating cough, yet exercise is beneficial and will help improve your breathlessness and exercise tolerance. Set yourself a goal and start today with a small amount of exercise.

Walking is an ideal exercise for lung fibrosis patients as it can be done over the course of the day, indoors or outdoors and at your own pace. Contact ILFA to order a 2000 Steps Exercise Walking Pack designed especially for lung fibrosis patients. Email or call 086 871 5264

21)   Practice patience
When you’re stuck in traffic, waiting in a queue or late try to remain calm. If you start to get annoyed or anxious, your breathing will be affected. Instead why not take the opportunity to have a few moments to focus on your breathing, relax and look at what is happening in the world around you. Patience can bring calm and inner peace to a stressful situation. 

22)  Keep well hydrated - especially in this warm weather!
Lung fibrosis causes the lungs to become stiff and hard due to the formation of scar tissue. As the lungs loose their flexibility, patients have to work harder to breathe and can develop increasing breathlessness doing everyday tasks. This additional stress can cause the body to become dehydrated more quickly. Make sure to drink plenty of water to prevent dehydration and maintain your strength and stamina.

23)  Support Groups

Attending a support group is a great way for patients and carers to meet others living with lung fibrosis, share experiences, learn positive coping mechanisms and make new friends.
Support groups meet once a month in Cork, Dublin, Kerry, Mid-West (Limerick-Tipperary) and the Midlands. Why not consider coming along?
Click the link for more details.

24)  Pace yourself
It can be difficult to exercise when you are short of breath but research has shown that regular exercise and keeping active can help maintain and improve your lung function and quality of life. You should pace yourself and take short breaks when walking or exercising, in order to manage your energy and breathlessness.

The ILFA Exercise DVD for lung fibrosis patients is available to order now. Contact ILFA on 086 871 5264 or email

25)  Don't stop moving!
Do not sit or stand too long. It is important to keep moving. If you are sitting watching TV, take advantage of the ad breaks and get moving by walking around the room, marching on the spot or doing sitting to standing exercises for 2-3 minutes. Every step counts! Short periods of exercise at regular intervals over the course of the day are just as good as 30 minutes non-stop exercise.

26)  Medication
If you are prescribed a new medication, always ask your doctor and pharmacist what the medication is for. You should ask for clear instructions on how you should take the medication, how often you should take it and at what time, and if you need to take it with food or not? All medication can cause unwanted side-effects and its a good idea to know what these are and to tell your doctor if you feel unwell or develop new symptoms.

Never take Over-The-Counter (non-prescription) medication without checking with your doctor or pharmacist first, in case there could be a drug interaction with your regular medication.

27) Write down a list of questions for your doctor
Its a good idea to prepare for your hospital appointment. Have a think and write down any questions that you have about lung fibrosis, your medication, or your treatment. Some people may get nervous, anxious or excited during their hospital appointment and having a list of questions will help you to remember any items or concerns that you want to discuss with your doctor.

28)  Practice patience
Try not to get frustrated with yourself or others. Instead keep cool and calm and let the moment pass. Stress, anxiety and frustration can all impact on your breathing and wellbeing.
29) Educate yourself
The best things you can do to help yourself adapt to living with Idiopathic Pulmonary Fibrosis (IPF) are;
  • learn more about IPF
  • work closely with your healthcare team and ask them questions 
  • take responsibility for your own health and treatment
The Irish Thoracic Society Position Statement on IPF ( ) and
ILFA's National Patient Charter for IPF ( are key documents to empower patients and families to look for  the best medical care.
30)  Lung Fibrosis is different for each patient
Lung Fibrosis affects everyone differently so it is important not to compare yourself to others. Treatment plans will differ for every patient depending on your degree of fibrosis, co-existing medical conditions and general health. If something is worrying you, for example, if you are struggling or have questions relating to your health, oxygen use, breathlessness or anything else that is on your mind. speak with your healthcare team; GP, hospital Doctor, nurse, physiotherapist etc. Write down your concerns so you will remember to ask at your next appointment.
31) Avoid eating late at night
Eating a big meal or snacking late in the evening can have a negative impact on your sleep pattern especially if you suffer from heartburn or acid reflux, also known as gastroesophageal reflux disease (GERD) - a common complication for lung fibrosis patients. A full stomach means that your body has to do extra work to digest food. It’s better to eat early in the evening and avoid lying down for a few hours following a meal.
32) Believe in yourself
Don’t let lung fibrosis define you. Believe in yourself and be proud of who you are. Be kind to yourself and adopt a positive outlook to help you to cope better with stressful situations. Focus on what you can do rather than what you can’t do.
33)  Ask about vaccinations
Now that Autumn is here and the weather is changing, the flu season is fast approaching. Always ask your respiratory doctor or nurse specialist if you should get the flu vaccine and/or the pneumonia vaccine. Lung Fibrosis patients should also ask family members to consider getting the flu vaccine so that they do not pass the virus to you.
34)  Try to be active everyday
Exercise should be part of your daily routine. You don't have to do all your exercise at once; you can split your exercises over the day, for example 10 minutes in the morning, 10 minutes in the afternoon and 10 minutes in the evening. This has the same effect as 30 minutes of continuous exercise. Don't forget the Irish Lung Fibrosis Association's 2000 Steps a Day Exercise Challenge - this exercise programme was specifically designed for lung fibrosis patients! Read more about the 2000 Steps Challenge here
35)  Energy saving tip
Showering, bathing and getting dressed is an everyday activity that requires a lot of energy and can leave lung fibrosis patients feeling breathless and exhausted. One way to save energy is to wrap yourself in a towelling bathrobe for a few minutes after bathing. It will absorb moisture, keep you warm and you will use less energy than drying off with a towel.
36)  You can do it!
Don't let negative thoughts impact on your ability to do things. Try to stay positive and believe in yourself.  Focus on what you can do, not on what you can't.
37)  Listen to your body
Do not ignore pain. This is your body's way of communicating that something is wrong. Keep a diary to describe the pain (for example; sharp, piercing, radiating, throbbing, dull), the location of the pain, the time of day, what triggers the pain, and what helps alleviate it. Consult your doctor to get the right diagnosis and treatment if you have pain.
 38)  A good nights' sleep
Some patients may experience sleep problems such as frequent awakenings, night-time cough and shortness of breath. To get a good night’s sleep, make sure you have a regular bed-time routine, avoid tea and coffee before bed-time, ensure your bed is comfortable, and your bedroom has the level of warmth and light that is best for you. Extra pillows or a 'V' shaped pillow that raises the level of your head and gives additional support and comfort may help you to sleep better.
39)  Don't be embarrased by a cough
A persistent dry cough is common with IPF. Don't let your cough interfere with your plans or cause you embarrassment. Explain to people in your company that you cough a lot because of your lung condition and you can't control it. People will be more understanding once they are informed and you can try to relax and forget about it bothering others.
40)  Take care with your posture
Be careful when leaning forward and bending over to pick up things as this can impact on your breathing and can also worsen symptoms for people who have acid reflux. Be mindful of your posture especially if you're helping with decorating the house for Christmas. Its a good idea to place items on a table rather than on the floor to save yourself from having to bend over repeatedly. And don't be afraid to ask for help.
41)  Relax tense muscle to improve breathlessness
When you become short of breath, the muscles in your shoulders, neck and chest can become tense and use up a lot of energy, making your breathless worse.
When you become short of breath, stop what you are doing and find a comfortable position that helps you to take control and breathe easier. Concentrate on relaxing the parts of your body that are tense, for example, unclench your jaw, relax your neck, and let your shoulders relax and drop down.
42)  Keep your festive diet healthy
This Christmas choose healthy treats. Buy fruit, nuts and berries instead of biscuits, crisps and sweets to keep temptation at bay. If you are tempted by party food, remember to eat small portions ... all things in moderation!