News and Upcoming Events 

 

 

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 @ info@ilfa.ie or by calling 086 871 5264

Tip of the week 2016

 

1) Set realistic goals.  Don't feel overwhelmed or under pressure to make drastic new year's resolutions regarding exercise. Set realistic and achievable goals. Focus on what you can do, rather than on what you can't, and try to do a little bit more at a pace that suits you. Good luck and keep moving!

2) Stair advice. Climbing stairs can be a real challenge for lung fibrosis patients and the effort often results in extreme breathlessness. You don't have to dread the stairs if you take things slowly. Its a good idea to stop half-way up the stairs to catch your breath. Why not put a favorite photo on the wall at the half-way point so you can stop and admire it before taking on the rest of the challenge. Remember to always hold on to the rail or bannisters for extra support.

3) ILFA' exercise resources. Reseach has shown that exercise can help to improve muscle strength and maintain independence and quality of life for lung fibrosis patients. ILFA has developed a walking programme called the 2000 Steps a Day Challenge and a home exercise DVD for lung fibrosis patients. To order your exercise resources, please call ILFA on 086 871 5264 or email info@ilfa.ie

4) 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 and the Midlands. Why not consider coming along? ...

Click the link for more details.
http://www.ilfa.ie/page.asp?pageId=74507

5) Let others help you. If someone offers to help with a task that tires you out (for example putting out the bins, shopping for groceries, mowing the lawn etc), accept their genuine kindness and save your energy for something more worthwhile and enjoyable. By allowing someone to help you and rewarding them with a smile, a handshake and kind words of thanks, you're increasing their happiness and self worth. Everyone is a winner!

6) 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 info@ilfa.ie

7) 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.

8) 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.

9) 29th February is Rare Disease Day.
Rare Disease Day aims to raise awareness of medical conditions that affect a small percentage of the population, including Idiopathic Pulmonary Fibrosis (IPF).
If you or a loved one has IPF, it is important to learn as much as possible about the condition and work closely with your healthcare team to get the best health outcomes.

http://www.ilfa.ie/docs/WhatisPulmonaryFibrosis2015.pdf


10) Good posture
Maintaining a good posture while standing and sitting can help your breathing. Take notice of your posture and see the difference that simple changes such as standing tall and sitting tall can make.

https://youtu.be/3KdmPSUGxLM


11)  Managing your breathlessness
Breathlessness is the most common symptom experienced by patients with lung fibrosis. Practice the 'STALL' breathing technique to help you control your breathing when you are short of breath. Contact ILFA to request a STALL breathing technique card for your wallet or purse. Email info@ilfa.ie or call 086 871 5264.

https://youtu.be/uqEDb5LxAY4


12) Tests and investigations
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 ?

http://www.ilfa.ie/docs/ILFAHospitalApptsfinal.pdf

 

13) Pulmonary function tests
When you are having a pulmonary function test you should wear loose clothing, make sure you are well hydrated, and tell the technician about your medication and any supplemental oxygen requirements. It is important to relax for the tests but also to work hard in order to get the best results and an accurate picture of how your lungs are working.

14) Home safety
Install carbon monoxide and smoke alarms in your home and check regularly that the batteries are working.

15) Rearrange your environment
Make changes around your home to help you conserve your energy. Rearrange items in your kitchen, bedroom and bathroom such that they are within easy reach for you. You should aim to decrease the amount of unnecessary reaching and bending. Use your conserved energy for doing other things.

16) Be positive
Life is not always how we would like it to be but it is important to make the best of 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 and move forward with a positive attitude to face whatever challenges lie ahead.

17)  Engage with nature !!!
Step outside your house, work-place or office for 5 minutes, breathe in some fresh air, and look up to the sky (even if it is raining!). Nature has a calming effect and will help you to relax and unwind.

 18)  Take some 'me' time
Don’t be afraid to tell your family that you would like some time-out. Why not have an hour to yourself to relax and de-stress? Let those around you know that you would like some 'quiet time' with yourself. After a short break you will be refreshed and ready to face the world again.

19)  Be kind to yourself
Be kind to yourself, reward yourself, and celebrate your achievements no matter if they are small or large.

20) Summertime
Now that summer is here, take 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 some safe sun exposure to help with Vitamin D production.

21) Keep well hydrated
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.

22) Seek help for a cough
A chronic cough is defined as a cough lasting more than 3 months. If you or someone you know has a persistent cough, make a GP apppointment today.

23) Take control in stressful situations
If you feel stressed by a situation, do not rush your response. Practice the following techniques to gain control of the situation; stop everything for a few moments. When ready, compose yourself, relax, take a few deep breaths, count to 10, move away or take a short walk and consider whether you need to respond and how you will respond. If you’re not ready, repeat the technique once more. 

24)  Eliminate the negative! 
As soon as you feel the slightest hint of negativity starting to take hold in your thoughts, make a conscious decision to  smile, laugh out loud, focus on something positive and try to look for  the silver lining. These simple actions can help to lift your mood and make you feel better.

25)  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.

26) Ask your healthcare team if something is on your mind
IPF is a complex disease that is different for each person. If you have something on your mind or medical questions that are troubling you, ask your doctor, nurse or social worker for advice. Write down your questions in advance and bring a notebook and pen to your next appointment so you can write down the answers.
 
http://www.ilfa.ie/docs/ILFAHospitalApptsfinal.pdf

27) 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 or doing some sitting-to-standing exercises for 2-3 minutes. Short periods of exercise at regular intervals over the course of the day are just as good as 30 minutes non-stop exercise.

28)  Set small goals
Don’t be daunted by long term goals, for example, to get fit, lose weight or achieve a personal milestone. Set yourself small, realistic, achievable tasks in the short term that represent small steps towards your ultimate goal. This will allow you to take control on a day to day basis and will help you to maintain your motivation. You can do it!

29) Happy time
Happiness levels naturally fluctuate and are related to your energy levels. Typically energy levels are highest in the middle of the day and lowest in the morning and late evening. Don’t expect to be happy all day long but remember to be kind to yourself in your quest for happiness.

30) Pulmonary rehabilitation classes
Ask your doctor to refer you to a pulmonary rehabilitation class in your area. These classes involve exercise training, breathing techniques, education about life style choices and advice about quality of life for patients with chronic lung conditions. Pulmonary rehabilitation has been shown to help IPF patients improve their exercise tolerance and lung function.

If tou cannot attend pulmonary rehabilation classes , why not try the ILFA 2000 Steps programme or the ILFA exercise DVD? To order your exercise pack or DVD call 086 871 5264 or email info@ilfa.ie

Click the link to read more about pulmonay rehabilitation. http://www.europeanlung.org/…/public…/pulmonary-rehab-en.pdf


 31) 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.

32)  Oxygen helps
Do not be embarrassed about breathlessness or having to use oxygen. You have been prescribed oxygen to help to maintain the correct concentration of oxygen in your blood so that your lungs can work to the best of their ability. Oxygen is prescribed to help you breathe so that you can carry on with daily activities and improve your quality of life. Use your oxygen correctly as prescribed by your doctors.

http://www.ilfa.ie/docs/ILFA.OxygenandIPF.pdf

 

33) The best things you can do to help yourself adapt to living with IPF are:
• learn more about IPF
• work closely with your healthcare team and ask them questions ...
• take responsibility for your own health and treatment


34) 
Don't forget to add these dates to your diary ...

The ILFA Service of Prayer and Reflection will take place at Gort Muire Carmelite Chapel, Balinteer, Dublin on Saturday 15th October at 3pm followed by a tea and coffee reception in the Church Hall. All are welcome
 
The next Patient Information Day will take place on Saturday 5th November at the Crowne Plaza Hotel, Swords Road, Santry, Dublin 9. There will be presentations by a Respiratory Consultant, a Respiratory Nurse Specialist and a Physiotherapist. All are welcome.
 
35)  Ask about getting vaccinated
If you have lung fibrosis, its a good idea to talk to your doctor or respiratory nurse about getting the influenza (flu) and pneumonia vaccines.
Its also a very good idea for everyone in the patient's family to get the flu vaccine to prevent influenza coming into the house.
 
36) 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.
 
37)  Join us to learn more about lung fibrosis
The next ILFA Patient Information Day will take place on Saturday 5th November in the Crowne Plaza Hotel, Northwood, Santry, Dublin. Speakers will include Respiratory Consultant Dr Kate O'Reilly (Mater Hospital), Respiratory Physiotherapist Petra Grehan (Mater Hospital), Respiratory Nurse Specialist Annette Duck (Manchester, United Kingdom) and Eamonn Costello (Patient Mpower). Registration will start from 10am and the meeting will end at approximately 1pm. This is a great opportunity to learn more about lung fibrosis, and meet the experts and other patients and caregivers. All are welcome to attend this free event. For more information, please contact ILFA on 086 871 5264.
 
38)  Write down a list of questions for your doctor
Before your hospital appointment, 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.
 
39)  Count your blessings!
First thing in the morning and last thing at night, think of 5 good things that make you happy. Practicing positive thinking and focusing on happy thoughts regularly can give us strength and energy, and help us become more optimistic and contented. If you write those thoughts down in a notebook or diary you'll have a permanent record of what is good in your life!
 
40)  Keep warm
Try to avoid sudden changes in temperature as this can affect your breathing and trigger coughing. Wearing a scarf may help you if you have to go outdoors into colder temperatures. Keep a spare coat or a blanket in the car in case you start to feel cold when out and about.
 
41)  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 shaped pillow that raises the level of your head and gives additional support and comfort may help you to sleep better.
 
42)  Keep in touch
Keep in touch and help raise awareness of lung fibrosis by sending an ILFA Christmas card. Call 086 871 5264 or email info@ilfa.ie to order your cards. The last dates for posting Christmas cards are listed below. Don't delay, order today!
 
Ireland 21st December
Northern Ireland 20th December
USA 12th December
Rest of the World 7th December
Great Britain 19th December
Europe 19th December
 
43)   Take 5!
During the day, take 5-10 minutes 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.
 
44)  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.