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Aspergillosis Community
Booklet Autumn 2016
National Aspergillosis Centre Wythenshawe Hospital
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FIT launch new website
The Fungal Infection Trust (FIT) has a new website that is clearer about what it does and is intended to boost donations.
Our patient groups are primarily funded by FIT so our patients group feature prominently on the website, www.fungalinfectiontrust.org
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Welcome! This booklet is intended for all patients & carers at the National Aspergillosis Centre who do not have access or prefer not to use computers. For those who do use comuters there is the Aspergillus Website www.aspergillus.org.uk.
This booklet is the idea of the Patients & Carers Support Group that meets every third Friday of the month in the Altounyan suite, which is just down the corridor from this clinic. Patients & Carers have suggested or provided most of the content. If you have suggestions for subjects we can mention or content we can provide there are contact details available elsewhere in this booklet, or come to our meeting sometime!
Please feel free to take this booklet home to keep handy and read at your leisure.
Contents are listed on the back page.
**This booklet is funded by the Fungal Infection Trust www.fungalinfectiontrust.org
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Gardening Hazards The autumn is a time of decomposition in the garden – all that growth that came forth in the summer is now dying back. Nature has several means by which it disposes of all that waste and of course gardens love the rotted compost that is provided by these processes. However fungi – particularly Aspergillus – play a major part in this decomposition and will grow quite invisibly throughout the compost, often releasing billions of spores. People who have aspergillosis or allergic asthma must take steps to avoid inhaling this material when gardening as it can irritate their breathing. It is important to avoid being present when high risk activities are happening e.g. moving or disturbing any dead plant matter (compost), opening bags of dead plant matter (e.g. bark chippings) or even digging soil. Facemasks are available that reduce the risk of inhaling fungal matter. If purchasing ensure the facemask conforms to FFP2 or FFP3 regulations. NB walking through piles of leaves is also hazardous – avoid!
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What is Aspergillus? Aspergillus is a common fungus found throughout the world, spread by microscopic spores which float in the air. We all breathe them in most of the time but most of us have efficient immune systems that kill the spores. Some people do not manage to kill all of the spores; sometimes because they are undergoing treatment that suppresses their immune systems (e.g. transplant patients, bone marrow transplant recipients), but sometimes because they are genetically susceptible (e.g. some asthma sufferers) or possibly because they have breathed in many more spores than is usual. They develop aspergillus infections, known as aspergillosis
Allergic Bronchopulmonary Aspergillosis (ABPA) You have a fungal infection deep down in your lungs. This irritates the lung tissue and causes scarring. The infection is treated with antifungal medication and the inflammation and scarring is reduced using steroids
Chronic Pulmonary Aspergillosis (CPA). Your lungs have been damaged in some way in the past (e.g. tuberculosis) and the fungus can grow in the affected area. Sometimes it grows as a fungal ball (i.e. aspergilloma) in the cavity. Sometimes several cavities are involved (CCPA).
Invasive Aspergillosis. Almost exclusively effects very highly immune suppressed people e.g. Transplant patients, bone marrow transplant recipients. Must be treated very urgently which is why this group of patients are retained in hospital during the danger period of their treatment.
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Ask for a Leaflet We have leaflets available in Clinic or on-line on the following topics:
How can I reduce the risk of Aspergillus Infection? - What is it? How it is treated? How can it be prevented? Intended for people who are immune-compromised
A guide to Allergic Broncho-pulmonary Aspergillosis (ABPA) - Useful guidelines for sufferers of ABPA. How is it diagnosed? What is the best treatment?
A guide to Chest Physiotherapy - Intended for sufferers of aspergillus chest infections such as ABPA, aspergilloma where excess lung secretions (or mucus, sputum, phlegm) are a problem. Chest Clearance Technique. Phil Langridge's (NAC Aspergillosis Specialist Physiotherapist) Top Ten Tips for Exercise.
Nutrition and Health - Food and aspergillosis. Diet and steroid therapy. Useful for everyone.
Allergic Fungal Sinusitis (AFS) - What is it? What are the symptoms? How is it treated?
Aspergilloma and Chronic Pulmonary Aspergillosis (CPA) - What is it? What causes it? Am I going to get it? Tests. How is it treated? Can it be cured?
Severe Asthma with Fungal Sensitivity (SAFS) - What is asthma? What has mould got to do with it? How will I know? How is SAFS treated?
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Be Aware: Damp Homes Damp in the home is usually caused by condensation – this starts to become a particular problem in the autumn as the weather gets colder and we close our windows more often.
Damp is known to cause health problems – asthma, allergy. Many with aspergillosis and asthma are particularly affected. Damp is unwanted water, moisture that has become persistent and is causing a problem (or going to cause a problem) to the structure or decoration of the building. If it persists it can cause rot and the growth of mould. Once moisture becomes persistent it can: Stain wall/paint/wallpaper, cause surface coatings to lift, damage wooden flooring and cause mould growth. Moulds are present in the air at all times. To grow they need to settle on a food source (paper/paste/plasterboard/dirt) and be provided with some moisture. If the moisture dries quickly (a few hours) little growth will occur, otherwise growth will begin, invisibly at first, then dark, black/brown/green patches develop. When does mould become a problem? - If the mould is in a normal “wet” room (bathroom/kitchen) on surfaces designed to be wet, then it can be wiped with cleaner and disinfectant. If a mould is in a room which is not designed to be wet or/and on surfaces not designed to be wet, there is a problem. Recent studies have shown that the appearance of mould patches larger than a postcard was evidence of a damp problem that could cause health problems.
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What do we do about it? - Identify the source of the moisture and stop it. Most damp is due to condensation, but you should also check for broken guttering or leaking downpipes and pouring water down the outside wall when it is raining. The damp could also be caused by leaking internal pipes.
Small amounts of damp could be superficial but don’t just paint over it. Much of mould is invisible so use a disinfectant - 10% bleach is effective as are other supermarket fungicides and it helps to add in some detergent to aid cleaning. If you are sensitive or have aspergillosis/asthma, don’t do this yourself and ensure the room is well ventilated to dry it out.
Large amounts of mould growing throughout material – use a professional company to clean and replace material – get a recommendation through an ISSE Surveyor (www.isse.org.uk).
How do we stop damp recurring? – prevent moisture accumulating, ventilate until dry. Most damp is condensation caused by lack of ventilation. Ventilate more to remove moisture – open windows, install vents, make sure vents are clear. Remove/reduce sources of water in the air – open windows when showering/boiling water in the kitchen, dry clothes outside or in a vented dryer. New homes can have very little airflow. Older homes with fireplaces may need to have their natural vents restored.
What health problems can occur? Those with asthma & allergic aspergillosis and sinusitis may find some symptoms worsening – it is worth keeping moulds out of your home!
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Creative Writing At one of the Support Group Meetings, we talked about Creative Writing and how Poetry and Prose can help express feelings and enhance communication. If you feel inspired, we would love to receive your poems or short stories.
Keats wrote this famous poem in September 1819 – just coming up to 200 years old!
Ode to Autumn by John Keats
Season of mists and mellow fruitfulness, Close bosom-friend of the maturing sun; Conspiring with him how to load and bless With fruit the vines that round the thatch-eaves run; To bend with apples the mossed cottage-trees, And fill all fruit with ripeness to the core; To swell the gourd, and plump the hazel shells With a sweet kernel; to set budding more, And still more, later flowers for the bees, Until they think warm days will never cease, For Summer has o'er-brimmed their clammy cell.
We have written several poems together now, just as descriptive and probably a bit more relevant to our thoughts and feelings as we attend this clinic.
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Personal tips on keeping well
We recently received a letter from someone who has aspergillosis describing how they manage to keep well in their day to day life without having to resort to more medication. After some discussion at our patients meeting we liked them so much we thought them worth reproducing here – let us know what you think!
• Avoid getting over-tired – go to bed at a reasonable time
• Try to avoid getting cold – wear the right clothes for the right weather/temperature
• Avoid people with colds or infections – often difficult but
try to minimise exposure where possible • Avoid stress – again as we discussed not always easy –
identify the sources of stress and try to eliminate them from your life as much as possible (remember the talk on stress and wound healing (see www.nacpatients.org.uk)). See page 13 for more details.
• Take care in the garden when clearing leaves – clear up
early, smaller amounts and use a mask.
Miss Baldock August 2014
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Phone buddies
My name is Julie Macintyre. My husband Dave was diagnosed with sarcoidosis, chronic necrotising pulmonary aspergillosis, with aspergilloma the condition caused him to have massive haemoptysis, attempts at embolisation , septic shock , pneumonia.
The medication caused him to have hallucinations and paranoia, he used oxygen 24 / 7 concentrator in the home and cylinder and liquid oxygen for going out.
Dave passed away but I still attend the monthly Patient Support meeting with my son David and still have contact with patients and their families who we met on the wards and clinics.
I am willing to talk to anyone about the experiences and challenges we faced honestly in a non-medical , layman’s way , or if you just want to chat with someone that isn’t part of your family circle who you feel you might upset don’t hesitate to give me a call at 0161 291 5866
NOTE this is NOT a contact number for medical advice and Julie has no affiliation with the medical team, she is a fellow experienced carer.
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Fundraising The principle charity we support is the ‘Fungal Infection Trust’. It supports a lot of our work here at UHSM and also supports awareness and research across the world. The Trust is a major supporter of the Aspergillus Website (www.aspergillus.org.uk) and its sister website for patients at www.nacpatients.org.uk.
The FIT was formed from the Fungal Research Trust and the patient-run charity the Aspergillus Trust quite recently (2012) in order to incorporate better support of patients’ needs and to act as the base for a series of initiatives intended to increased funding and research for fungal diseases.
You will be able to read of more of their work on their new website at www.fungalinfectiontrust.org
Donations from patients are a significant source of its funding and donations can be made on their donations page, or by handing cash/cheques to a member of staff at clinic.
Please mark your donation with your name, address, reason for donation and indicate whether you wish to donate gift aid.
Make cheques out to ‘Fungal Infection Trust’
Thank you!
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Stress Chronic stress is a killer and when we are already struggling with an infection or injury it can slow down recovery. We all need to minimize stress in our lives but as we all tend to lead lives filled with stress that can be easier said than done. So what can we do?
Recognise triggers. Keep a diary for 2 – 4 weeks and note when your stress increases. Note date/time/place of the stressful episode, what you were doing, who you were with, how you felt emotionally/physically, what you were thinking. Rate the stress episode from 1 – 10. Use this diary to identify those things that trigger your stress and avoid them. Remember that lots of smaller things can add up to a lot of stress.
Take action to tackle stress. Different things work for different people – relaxation techniques, exercise, talking things through. Even if you eliminate just one or two smaller triggers it can be a big help.
Get support. It can be good to attend stress management classes or groups to help talk things out – your GP will be able to help. Our Patient & Carer support meeting are a source of social support that can help too. They happen on every first Friday of the month at 1pm here at NAC but there are also regional meetings.
Slap it away it serves no purpose Talk to others it often helps Relax and take a deep breath Engage in a new activity Sing along to your favourite music Stretch your legs and go for a walk
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Library Our patient & carer community here at the National Aspergillosis Centre is building a small library of books that we lend out on meeting days (first Friday of every month)
Allergy-free gardening: learn how to choose plants than minimize any allergies you may have to garden plants
Books that offer tools to help control stress: Mindfulness (Williams & Penman), Mindfulness for health (Burch & Penman). Both introduce the reader to the effectiveness of a religion-free version of meditation, studied scientifically and known to work for many of us. Mindfulness for the Frazzled (Ruby Wax) takes a less serious look at mindfulness.
Books about coming to terms with end of life: This is something that all of us have to manage at some time, but so few of us do! Some people struggle with the relationship between having a chronic disease and limited life expectancy. These books can help you think it through, patient, carer or friend /relative.
If you have a suggestion for more book we could add let us know,
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Online communities Facebook Communities are far reaching, covering billions of people around the world. One of our main aims is to reach as many people as possible with information about aspergillosis infections and to let them know that we offer specialist advice and support based at the NHS funded National Aspergillosis Centre in Manchester, UK.
If you can get access to a computer – even a good mobile phone nowadays allows you to participate – you will be able to join our groups on Facebook (https://www.facebook.com/groups/aspergillussupport/) or Yahoo! (https://uk.groups.yahoo.com/neo/groups/AspergillusSupport/info)
For those with computers, go to http://www.nacpatients.org.uk
No computer? No Problem If you prefer a more face to face meeting to talk to fellow patients, carers and staff with lots of opportunity to ask questions and chat informally (and a free lunch) then our monthly meeting in the Altounyan suite (signposted from the North West Lung Centre clinic) is for you. Park for £3 all day, leaving a note in your windscreen that you are attending our Aspergillosis Support Group and arrive at 1pm for tea & sandwiches.
Whatever you want to do - drop by and join in with one of the groups, they are full of friendly people who understand aspergillosis who are more than happy to chat.
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Local Support Groups We are a national centre more or less positioned in the centre of the UK, but there are many people who have to travel a long way to visit the clinic or visit our support meetings held at the Altounyan Suite, just down the corridor from the NAC clinic on the first Friday of every month.
Consequently we support the running of local groups in the hope that we will be able to develop a nationwide support network run by patients & carers. The intention is to offer everyone a local support group where you can phone the leader (or visit the page on Facebook) and meet up with fellow patients & carers closer to where you live.
Current groups:
Liverpool: 0161 291 5866 Brenda Winslade Wigan: 0161 291 5866 John Barker West Midlands: 0161 291 5866 Jean Jones East Midlands: 0161 291 5866 Kate Montali London: 0161 291 5866 Bart Govaert Yorkshire: 0161 291 5866 Lin Holding Denton Bristol: 0161 291 5866 Keith & Anne James Scotland: 0161 291 5866 Frances Gallagher
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News & Diary September. The respiratory and allergy research team (of which the National Aspergillosis Centre is part) here at University Hospital of South Manchester has been awarded prestigious NIHR Clinical Research Facility status, one of only 19 centres in the UK and one of only two or three specializing in respiratory disease.
The Fungal Infection Trust have launched their new website – see http://www.fungalinfectiontrust.org
9th October. UK Fungus Day. Events held around the UK and at Manchester University. www.ukfungusday.co.uk
April 2017. UHSM merges with Central Manchester hospital as ‘Devomanc’ starts to take effect.
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Contact details Patient & Carer support can be accessed by phone at
0161 291 5811 (Chris Harris)
Or 0161 291 5866 (Graham Atherton)
We would be delighted to hear of any suggestions you may have to add to this booklet – this is your publication to adapt to your needs.
Carers Carers are a vital part of patient care but are often ignored. Did you know you can claim carers benefits (£61 a week) NI credits and grants to help with various needs such as a holiday, a computer? Carers need a break and support as much as patients do but they frequently put the patient first neglecting their own specific needs! This can lead to carers becoming patients!!
Don’t wait until it is too late, for help & support try:
Carers UK 0808 808 7777
Young Carers & Carers Trust 0844 800 4361
Manchester Carers Centre 0161 27 27 27 0
Manchester Carers Forum 0161 819 2226
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Seasonal well-being
As the weather gets colder avoid seasonal infections by following some simple tips
Kitchen: Replace sponges, use separate chopping boards for raw meat, raw poultry, raw fish, cooked meats and fruit and vegetables
Bathroom: Always put the toilet seat down before you flush!
Around the house: Keep dust levels low by minimizing use of carpets & rugs. HEPA vacuum clean & wet mop.
Your belongings: Avoid putting your shopping bags & handbags on pavements/dirty floors and then directly on to kitchen worktops, dining tables or a bed!
Wash your hands: The greatest risk of infection comes from surfaces you touch. Washing your hands properly cuts the risk of infection dramatically. Wash for 20 seconds every time you use the toilet, before and after preparing food.
Flu Jab: Important for all those with chronic lung infections.
NOTE: tips on correct technique for washing hands is given on the back page.
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Stay Warm Very important for those with lung infections and the elderly. Aim to keep your living room at 21C and bedroom at 18C. In cold weather set the heating to come on a little earlier rather than turning the thermostat up. Ventilation is still important! NB Many patients will be eligible for help with keeping your home warm – ring your supplier about the Warm Home Discount Scheme worth £140!
Going out If you have a bronchodilator use it half an hour before leaving home into colder air. Make sure your wrists, ankles and back of neck as well as fingers & toes are covered. Wearing a hood or scarf across your mouth can help.
Activity & Exercise Staying active in the colder months helps circulation & boosts immunity to infections.
Food & Drink Healthy balanced diet with lots of fresh fruit & green vegetables, lean meat, fish, beans, wholegrain, nuts & seeds will help keep your immune system in good condition.
Live Well Sleep well, set a routine to help you relax. Get some fresh air when the weather is nice!
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Benefits Chronic lung infections can qualify the patient and family/carer for several different welfare benefits – it is worth knowing your rights!
Care and mobility
• Personal Independence Payment
• Attendance Allowance
Help for carers
• Carers Allowance
• Carers Credit
Help with heating costs
• Winter Fuel Payments
• Cold Weather Payments
• Warm Home Discount Scheme
The British Lung Foundation run a helpline for people who want more information about their entitlements. Calls never cost more than local rates, 9-5, Mon-Friday.
03000 030 555 [email protected]
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Contents
FIT launch new website............................................................ 2
Gardening Hazards ................................................................... 4
What is Aspergillus? ................................................................. 5
Ask for a Leaflet ....................................................................... 6
Be Aware: Damp Homes .......................................................... 7
Creative Writing ....................................................................... 9
Personal tips on keeping well ................................................ 10
Phone buddies ....................................................................... 11
Stress ...................................................................................... 13
Library .................................................................................... 14
Online communities ............................................................... 15
No computer? No Problem .................................................... 15
Local Support Groups ............................................................. 16
News & Diary ......................................................................... 17
Contact details ....................................................................... 18
Carers ..................................................................................... 18
Seasonal well-being ............................................................... 20
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