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

Tip of the week 

1)  Keep a diary for 2019
If you're thinking about a new year’s resolution, why not commit to keeping a diary for 2019? 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. Happy New Year from the Irish Lung Fibrosis Association (ILFA Ireland)!

 

2)   Be informed
ILFA has a range of specially developed resources to help patients, their care givers and families learn more about living with lung fibrosis. We have written materials including leaflets and newsletters, the Medical Alert Card and the STALL breathing technique card, on-line videos and information (www.ilfa.ie) and the 2000 Steps a Day exercise pack for patients. Email info@ilfa.ie or call 086 057 0310 to order items.

 

3)  Take notes
When going to your hospital appointment, bring a notebook and pen with you and write down anything that will help you remember what your doctor or nurse said during your visit.
For more information about getting the most out of your hospital appointments, see the ILFA leaflet.
www.ilfa.ie/docs/ILFAHospitalApptsfinal.pdf

 

4) 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 favourite photo or picture 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.

 

5)  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.

 

6)  Plan in advance
When organising a trip away, it is important to plan your journey and hotel stay as far in advance as possible. If travelling by air, rail or coach, let your travel company know about your medical needs for example if you use oxygen, and any requests for extra power sockets, wheelchair access and a seat close to the bathroom. Hotels can provide larger rooms sometimes called '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.

 

7)  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, anxieties and stress you may have.

8)  Prioritise and save energy
Fatigue (extreme tiredness) is a common symptom for many patients with lung fibrosis. Tiredness can affect your energy levels and ability to do daily activities. Try to balance your activities and energy levels by planning ahead, doing things at your own pace, and prioritising the things that you really want to do.

 
 
9)  Emergency contact numbers
Prepare a list of all your emergency contact telephone numbers including your family contacts, GP surgery, local hospital, respiratory nurse specialist, pharmacy and 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 a copy to your spouse, partner or companion.

 

10)  Palliative care

Don't be afraid if your doctor or nurse asks to discuss palliative care with you. 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.

Why not come along to ILFA's Patient Information Day on Saturday 6th April at the Hilton Hotel, Northern Cross, Malahide Road, Co Dublin from 10am until 2pm? We hope you can join us to learn more about Palliative Care and Planning for the Future with Lung Fibrosis. All are welcome.
The topics being discussed will include;
(1) Practical planning for living with Idiopathic Pulmonary Fibrosis (IPF) including home adaptations and oxygen
(2) Palliative care needs and management of symptoms
(3) End of life considerations
(4) Psychological needs and support for living with IPF
(5) Acute exacerbations and transplantation
(6) Legal matters

Please call 086 871 5264 or email info@ilfa.ie to register for this free event.

 

11)  Breathe easy

There are some easy techniques that you can practice to help you manage and control your breathing when you become breathless including;
1) Repeating mantras in your head or aloud, for example,
    "I have survived this before, it will go away"
    "There is nothing to be frightened of, I will be ok"...
    "I am fine, I will be fine"
    "In with calm, out with fear".

2) The STALL breathing technique.
S = Stop what you are doing, T = Turn up your oxygen and Try to remain calm, A = Allow your mind to visualise a safe place, L = Let yourself daydream and imagine yourself in your favourite, safe and relaxing place, L = Let your breathing return to normal.

3) Positions of ease - Sit down and rest your hands on your knees with your palms turned upwards, lean forward on a wall, or sit upright,

4) A small hand-held fan or an electrical fan that blows cool air over the face can help to improve the sensation of breathlessness for some patients.

 

12)  Exercise to protect your muscles

Sarcopenia is the medical term for the loss of muscle mass and strength that occurs with ageing and some chronic health conditions. Muscle loss can lead to a significant decrease in strength and mobility, and result in increased frailty and disability.
It is vital for IPF patients to exercise regularly to maintain strength and muscle mass. 

Click here to watch the ILFA Exercise DVD for Lung Fibrosis Patients. 

13)  Make a change today
Decide today to make a positive change in your daily routine and try to become more active. Walking  and yoga are ideal activities for lung fibrosis patients and ILFA Ireland can provide you with the tools to get started. Contact ILFA to order your 2000 Steps Exercise Walking Pack and Yoga DVD designed especially for lung fibrosis patients. Email info@ilfa.ie or call 086 871 5264

14)  Be mindful of your breathing
Mindful breathing for a few minutes each day can restore a feeling of calm and help ease stress and anxiety. Everyday try to take a few quiet moments for yourself and follow these instructions.
1. Sit upright on a chair
2. Close your eyes
3. Concentrate on your breathing
4. As you inhale, think of your favourite place
5. Exhale slowly
6. Continue to breathe slowly and deeply this way for a few moments and allow yourself to relax and unwind
7. Open your eyes and carry on with your day

15)  Smile more often
A smile is contagious and it is good for your health. Every time you smile your body releases “happy hormones” called endorphins which can lower your stress levels, lift your mood, and help lower your blood pressure. Why not try smiling more. When you smile at someone, they often smile back! Spread some happiness :0)

16)  Prioritise and save energy
Fatigue and extreme tiredness are common symptoms for many patients with lung fibrosis. Tiredness can affect your energy levels and ability to do daily activities. Try to balance your activities and energy levels by planning ahead, doing things at your own pace, and prioritising the things that you really want to do. 

17)  Maintain a good posture to help your breathing
When standing and walking, you should stand tall with your shoulders back and your head held high. When sitting, do not slouch or lean forward as this will put pressure on your diaphragm and rib cage and reduce your lung volume. If the amount of air that can be inhaled into your lungs is reduced, your breathing will be restricted. Ask your physiotherapist for advice on exercises to improve your posture and maximise your lung capacity.

https://www.youtube.com/watch?v=3KdmPSUGxLM

18)  Me time
Fatigue (extreme tiredness), anxiety and stress can all have a negative effect on your breathing. Therefore it is important to set aside some time everyday to relax both physically and mentally. Try to relax by listening to soothing music, meditating, reading a book or doing something else you find relaxing. Even 10-minutes of relaxation a day can have a positive effect.

19)  Find time every day to relax fully

Progressive muscle relaxation is a technique that involves slowly tensing and then relaxing each muscle group in turn, while focusing on your breathing. Find a quiet space, and while sitting or lying down follow these steps.
1) Breathe in and tense you toes for a few seconds, then breathe out and release
2) Breath in and tense your legs for a few seconds, then breathe out and release
3) Breath in and tense your abdomen muscles for a few seconds, then breathe out and release
4) Breath in and tense the muscles of your arms and shoulders, then breathe out and release
5) When you are finished with all of the muscle groups, close your eyes for a few moments and focus on your breathing.
Practice this relaxation technique regularly, in order to reap its benefits.

20) Conserve your energy
Prioritise your daily tasks so you can make the most of your energy and maximise your quality of life. Learning to conserve your energy is all about finding a good balance between work, leisure and relaxation in order to decrease the energy demand on your body. You can do this by accepting help from others, using aids and appliances to make life easier and factoring in time and energy for rest and doing the things you really enjoy. Remember its ok to say "no" when you need to.

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

22)  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.

 23)  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.

 
24)  Heartburn / acid reflux
There is a higher incidence of gastro-esophageal reflux disease (also called GERD, acid reflux or heartburn) in patients with IPF compared to healthy individuals and those with other lung conditions. It is thought that GERD might promote further lung fibrosis if untreated. Tell your doctor if you develop acid reflux, heartburn, nausea, or if you notice an increase in these symptoms.
 
25)  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]

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

(1) The ILFA Ecumenical Service of Prayer and Reflection will take place at Terenure College Chapel, Terenure, Dublin on Saturday 12th October at 3pm. All are welcome

(2) The next ILFA Patient Information Day will take place on Saturday 19th October at the Crowne Plaza Hotel, Northwood, Santry, Dublin 9 from 10am to 2pm. There will be presentations by a Respiratory Consultant, a Respiratory Nurse Specialist, a Physiotherapist and others. All are welcome.

25)  Be informed - 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
• visit www.ilfa.ie for more information on the educational and exercise and practical resources available from the Irish Lung Fibrosis Association (ILFA Ireland)
 
26)  Palliative care
Don't be afraid if your doctor or nurse asks to discuss palliative care with you. Palliative care is a medical specialty that focuses on relieving your symptoms, particularly breathlessness. 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 pulmonary fibrosis patients and can help improve your symptoms, well being and quality of life.
 
27)  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 Cavan, Clare, Cork, Dublin, Kerry, Mid-West (Limerick-Tipperary) and the Midlands.
Click the link for more details.
www.ilfa.ie/page.asp?pageId=74507