Research Education Support
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 @ firstname.lastname@example.org or via phone @ 086 8715264.
Each week ILFA will highlight a simple tip to help patients cope with the challenges of living with Lung Fibrosis. Please let us know if you have a special tip. It could make a big difference to other patients!
To send your tip to ILFA, please click here.
January is the perfect time to start a new diary.
Keep a diary of all your hospital visits, your GP visits and visits to the respiratory clinic. Make a note in your diary of days when you feel well and when you feel poorly. Remember to record any exercise or walks you do and how you felt afterwards. You should keep a record of all your medication and list any changes in your medication (e.g. new drugs, medication that has been stopped by your Doctor, dose changes). Record how you feel after taking your medication and whether it has made a difference to your appetite. Your diary will help you and your Doctor to monitor your well being over a period of time.
Tip 2 Pace yourself
It can be difficult to exercise when you are short of breath but research has shown that exercising and keeping active can maintain and sometimes improve your lung function and quality of life. Always take short breaks when you are walking or exercising and do physical activities at a slower pace, in order to manage your energy and reduce your level of breathlessness. This way you can continue to take part in the activities that you enjoy.
Tip 3 Plain English
Always ask your doctor and other healthcare workers to use "plain English" if they use medical terms or words that you do not understand.
Click here to read more about some of the medical terms that are used in the management of Lung Fibrosis.
Tip 4 Register with ILFA
Are you registered with ILFA? If not, sign up today to receive our Newsletter. It is produced twice a year and has details about upcoming Patient Information Days, new developments, patient stories, and fundraising updates. You can register for free by writing to ILFA, PO Box 10456, Blackrock, Co. Dublin or email email@example.com. Don't forget to include your name and full address. Alternatively, you can call or text your details to: 086 057 0310
Tip 5 Portable Oxygen
Some Lung Fibrosis patients may need to use supplemental Oxygen. We use more oxygen when we move around compared to when we sit still. Using portable oxygen can sometimes give you more energy.
If you use portable oxygen, always ensure that your oxygen cylinders are full before leaving the house. If you are going on a journey, bring a spare oxygen cylinder in case of emergency and ensure that you have enough oxygen for your outbound and return journey.
Tip 6 Breathing Exercise
Becoming short of breath can be very distressing. When experiencing episodes of shortness of breath, stop what you are doing and take a rest. Try to take slow deep breaths in through your nose and count for 3 seconds before breathing out. Try to repeat this several times if you can. It can also help to expand your lungs by repeating this exercise every couple of hours.
Tip 7 Register as a Priority Support Customer with your electricity supplier.
Oxygen concentrators run off the normal electricity supply in your home. Your electricity supplier should be notified that you are dependent on home oxygen via an electrical concentrator. You can register your personal details with your electricity supplier by completing a Priority Support Registration Form. This information will enable the electricity supply company to identify customers who are vulnerable to supply interruption.
In case of loss of electricity, ESB Network will prioritise your local area for electrical power restoration. In the case of planned electrical interruptions, the ESB Network will contact priority support customers to inform them in advance of the date and likely duration of the disruption of the electricity supply.
To register as a Priority Support Customer contact:
(1) ESB/Electric Ireland Customers should contact Customer Services at 1850 372 372.
You can also download the form from the website. www.esb.ie and return it to: Electric Ireland (F4354), PO Box 10969, FREEPOST, Dublin 11
(2) Airtricity Customers should contact Customer Services at 1850 812 220
(3) Bord Gáis customers should contact Customer Services at Bord Gáis Energy. Tel: 1850 632 632
Tip 8 Contact numbers in case of emergency
Prepare a list of your emergency contact telephone numbers including your family contacts, GP surgery, local hospital, local pharmacy and the number of your oxygen supply company. Keep this list somewhere prominent in your house and carry a copy of the list with you in your wallet or purse and in your oxygen carry case. You should also give a copy of your emergency numbers to your spouse, partner or companion.
Tip 9 Healthcare documentation folder
Keep a folder with all your documentation relating to your health stored together in one place e.g. medical card documentation, hospital appointments, health insurance correspondence, application for home modifications grant etc. Keep a copy of all letters, email correspondence and application forms that you submit to the HSE and other governmental agencies.
Tip 10 Apply for a Disabled Person's Parking Card
If you have reduced mobility and experience shortness of breath on walking, apply for a Disabled Person’s Parking Card (also known as a European Parking Card, Parking Badge). The parking permit can be displayed on your own car or on the car of the person driving you (e.g. spouse, relative, friend, neighbour) and entitles a disabled driver or a disabled passenger to free parking in designated disabled parking spaces or free parking in designated parking areas that normally require a pay and display ticket.
You must write to the Irish Wheelchair Association to request an application form. Remember to send a stamped address envelope to speed up the application process. Your letter must contain details of your medical condition (Lung Fibrosis) and how this impacts on your mobility, your age, and any mobility aids that you use.
Send your letter requesting an application form to: Parking section, Irish Wheelchair Association, National Mobility Centre, Ballinagappa Road, Clane, Co. Kildare.
Tel: (045) 893 094 or (045) 893 095 or Email: firstname.lastname@example.org
Tip 11 Fundraising
Encourage your relatives, colleagues, and friends to fundraise for ILFA. The Flora Women's Mini-marathon and the Cork City Marathon / Mini-marathon / team relay will take place on 4th June. Contact ILFA by email or call 086 057 0310 for a fundraising pack. All money raised goes towards achieving ILFA's aims of Research, Eduction and Support.
Tip 12 Don't forget to add these dates to your diary ...
The next Patient Information Day will take place on Saturday 28th April at the Crowne Plaza Hotel, Swords Road, Santry, Dublin 9.
There will be presentations by a Respiratory Consultant, a Transplant Surgeon, Social Worker and Physiotherapist. All are welcome.
The ILFA's Interfaith Ceremony of "Healing, Thanksgiving, and Commemoration” will take place at Our Lady of Mount Carmel, Whitefriar Street Church, Aungier Street (Great George’s Street), Dublin 2 on Saturday 12th May 2012 from 4-5pm followed by a tea and coffee reception in the Church Hall. All are welcome.
Tip 13 Conserve your energy
It is often difficult to do daily activities when feeling symptoms of breathlessness and whilst it is important to try to remain as active as possible, it is also important to try to conserve your energy. Try to remember the activities that make you most breathless, and adjust the way you approach them. For example: Many people find it difficult to shower in the morning and so to conserve energy it can be helpful to use a plastic seat or stool to sit down while you are washing.
Tip 14 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.
Tip 15 Takes 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 appointment.
Tip 16 Keep your doctor informed
Always tell your doctor or GP if you have had any illnesses since your last appointment e.g. cold or flu. Tell them if you took any medication for this illness.
Tip 17 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 ?
Tip 18 Know your medical history
Know your medical history e.g. if you have had previous surgery, allergies, illnesses, your medications including all prescription and non-prescription medications, vitamins, food supplements and herbal supplements. Tell your doctor if you have had an adverse reaction to a medication. Some foods can interact with medication. Ask your Doctor for advice if you have any concerns about your medication.
Tip 19 Bring a friend along
Ask a family member or friend to accompany you to your GP or hospital appointments. It is good to have support and you may not be able to recall everything that your doctor tells you. It is very useful to be able to discuss what was said during the consultation with somebody else.
Tip 20 Hand hygiene
Do not be afraid to ask your health care staff if they have washed their hands before touching you. Hand hygiene is very important to prevent the spread of infection.
Tip 21 Taking new medication
If you are prescribed a new medication, 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 of the day, if you need to take it with food or not? and what are the possible side-effects?
Tip 22 Try to be positive
Try to have a positive outlook and appreciate the good things in your life. Don't forget to laugh and smile. Surround yourself with happy people.
Tip 23 Organ donation
Set aside time to have a discussion about organ donation with your family members. It is important for everybody's next of kin to know their wishes if they would like to donate their organs for transplantation if the situation arises. A person's next of kin must give consent for organ donation if approached by the medical team after their loved one's death. If your next of kin knows your wishes, they are more likely to uphold them. This conversation with your loved ones could save other's lives in the future.
Organ Donor Cards are available from the Irish Kidney Association at www.ika.ie or from your local pharmacy.
Tip 24 Take your time
Plan your activities in advance so that you are not rushing to get ready and becoming more fatigued. Always factor in extra time in case of unexpected delays or tiredness. It is important not to panic or get upset if time is against you as this could affect your breathing and energy levels. Take your time, you'll get there.
Tip 25 Know your limits
Whilst it is important to try to keep active, know your limits. Do not be afraid to ask for help if you need it. Your family, friends and neighbours will help if asked e.g. mowing the lawn, putting out the rubbish/wheelie bins, shopping, driving you to the hospital etc. If you don't ask, people might be reluctant to offer in case they think they're offending you.
Tip 26 Continue to socalise
It is important to continue to socialise with your friends. Sometimes it is hard to have telephone conversations when your breathing is affected so make efforts to spend time with your family and friends in person. Let them do the talking if you're short of breath. You can determine the length of time you want to spend catching up and let them know when you're tired. Don't be afraid or embarrassed to say "I've had enough, I need a rest now".
Tip 27 Try to continue with your hobbies
If you're involved in a club or have a hobby, you should continue to do the things that make you happy. You can adapt your level of participation and use and adjust your oxygen if necessary. If you're not able to continue with your chosen sport or activity, you can continue to meet with your friends and join in the fun afterwards.
Tip 28 Rearrange your environment
Make changes around the house to help 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.
Tip 29 Weight management
Weight management is important for Lung Fibrosis Patients. In order to lose a few pounds you need to be motivated. You should involve your family and friends for extra support. To achieve weight loss; you must change your lifestyle by making regular exercise part of your daily routine, plan your meals in advance, make sure that you eat lots of fresh fruit and vegetables, drink plenty of water and cut down on your portion sizes. For more information please see the ILFA leaflet called "Weight Management and Nutrition for Pulmonary Fibrosis", available at www.ilfa.ie (Click the link to download Weight Management and Nutrition for Pulmonary Fibrosis) or call 086 8715264 to request a leaflet.
Tip 30 Maintain a good posture
Try to maintain a good posture. When standing and walking you should stand tall with your shoulders back and your head held high. When sitting down it is important not to slouch or lean forward as this will put extra pressure on your diaphragm and rib cage, which will reduce your lung capacity, and restrict your breathing (as the amount of air inhaled into the lungs is decreased). Ask your physiotherapist for advice on exercises to improve your posture and maximise your lung capacity.
Tip 31 Avoid wearing restrictive clothing
Avoid wearing restrictive clothing (e.g. belts, ties, bras, tight fitting shirts or jackets) as this could restrict the outward movement of your chest, diaphragm, and rib cage, and affect your breathing. It is important to always wear loose clothing when exercising or having your Lung Function Tests performed.
Tip 32 Try to be active everyday
Try to be active everyday. You should make exercise part of your daily routine. You don't have to do all the exercises at once; you can split your exercises over the day e.g. do 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. One way of introducing exercise into your daily routine is to get moving during the commercial breaks on TV. It will make a difference with time!
Tip 33 Set realistic goals
Be realistic. It takes time to build up your stamina and strength and achieve your goals. If you have a bad day, do not worry. The important thing is to start again the next day. Set yourself realistic goals, think positive and reward yourself when your goals are achieved. You can do it!
Tip 34 Adverse drug reactions
Medications can sometimes cause unwanted side effects. These so called Adverse Drug Reactions can occur when you start a new medication, when the medication dose is decreased or increased, or when you stop using a medication. Examples of some common side effects include nausea, vomiting, diarrhoea, dizziness, dry mouth, fatigue and itching.
When you receive your medication always read the Patient Information Leaflet, provided with all medicines (prescription and over the counter medicines), in order to be familiar with the potential side effects of your medications. You should always inform your doctor if you think that you are experiencing a side effect, in case your medication or the dose needs to be changed.
Tip 35 Listen to music
Instead of turning on the TV for "background noise", put on some music! Music has therapeutic benefits and helps to get rid of stress and improve mood. Why not sit down and relax to soothing and calming music or if you’re feeling energetic and inspired ... you could march on the spot or dance to your favourite music for 30 seconds at a time.
Tip 36 Be Positive
Try to think positive thoughts and use positive words. Don't say "I can't" … instead say "I'll try!
Tip 37 Avoid strong smells
Some patients may be sensitive to strong smells. Cleaning products, fumes, perfume, and second-hand smoke may trigger coughing and breathing difficulties. If you find yourself in an area with strong smells or smoke, leave and go to another room or area, ask your friends and family not to wear perfume, aftershave and cologne, insist that nobody smokes in your vicinity (especially if you are on oxygen) and always ventilate the house after cleaning products have been used.
Tip 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 shaped pillow that raises the level of your head and gives additional support and comfort may help you to sleep better.
Tip 39 Relax and meditate each day
Fatigue and stress can have a negative effect on your breathing therefore it is important to set aside time everyday to relax both physically and mentally. Why not relax by listening to soothing music, meditating, reading a book or doing something else you find relaxing? Even 10-minutes of relaxation a day will help.
Tip 40 Phone a friend!
It is important to have a network of family and friends for support. Research has shown that we're happier people when we have regular contact with friends and family. Why not telephone, email or write a letter to someone who you have not seen for a while. They’ll be delighted to hear from you. If you find it difficult to speak on the phone you can arrange meeting up face to face to catch up.
Tip 41 A word of thanks
Tell your family members that you appreciate them. You will feel good and they will feel great following the expression of a simple message of thanks.
Tip 42 Name and direct dial telephone number
If you need to call a large organisation such as the HSE, your local county council, hospital department or any public body for information, advice, or to request a service, always ask the person who deals with your enquiry for their full name and their direct dial number. This means that if you need to contact them again, you can deal with the same person and they will be familiar with your enquiry.
Tip 43 Sit down to conserve energy when possible
When possible, you should sit down to perform activities such as preparing food, ironing, washing dishes, showering, making a telephone call or working in the shed. By performing tasks sitting down, you will conserve more energy. Keep a high stool or chair for use in your kitchen or at your work bench and a plastic chair for the shower. Remember to sit upright in order to keep a good posture. Do not cross your legs, instead keep your feet firmly on the floor to ensure good balance and posture.
Tip 44 Count your blessings
Every day 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 you'll have a permanent record of what is good in your life!
Tip 45 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.
Tip 46 Order your ILFA Christmas cards now!
Remember to order your ILFA Christmas cards! We can all help raise funds and raise awareness about Lung Fibrosis by simply sending an ILFA Christmas card. Cards cost €6 for 1 pack (8 cards) or 2 packs for €10. Call 086 057 0310 or email email@example.com to order your cards. All funds raised will support the work of ILFA.
The last posting dates for Christmas 2012 are;
Ireland and Northern Ireland 19th December
Great Britain and Europe 18th December
Rest of the World 7th December
Click here to read previous tips.
Tip 47 Be kind to yourself
Be kind to yourself, reward yourself, and celebrate your achievements no matter if they are small or large.
Tip 48 Store medication safely
Always store your medicines safely – out of the reach and sight of children. If you think that your child or grandchild may have accidentally taken some medication, call the Poisons Information Centre for immediate advice on 01 809 2166
Tip 49 Be inspired
Read the life story of somebody you admire. You will find inspiration in their words, deeds and knowledge.
Tip 50 Keep your hands warm
Wear a pair of mittens over your gloves. This will add another layer of insulation and will keep your hands and fingers much warmer. It really works!
Tip 51 Fire safety
Make sure that your home has a working fire alarm and carbon monoxide detector. Have an escape plan for all the family. Buy a small portable fire extinguisher for your house.
Tip 52 Emotional help
Do not ignore your emotional well being. Discuss any concerns you have with your Nurse, GP or Hospital Doctor. There are a number of strategies that can be used to help with the emotional challenges of living with a long term illness.