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Aspergillosis
Community
Booklet Autumn 2014
National Aspergillosis Centre
Wythenshawe Hospital
2
Schools Artwork In 2012 we ran an art competition for schools to raise
awareness of aspergillosis. This entry was highly commended
3
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.
4
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!
5
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.
6
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?
7
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!
9
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. The following poem
was written by our monthly support group as a result of our
discussions. If you feel inspired, we would love to receive
your poems or short stories.
Hospital car park
Here I lie in the rush of life
under engines revving, headlights shining as rain falls
and tyres track through puddles.
Cars are jostling, then parking higgledy piggledy.
People are coming and going: happy, anxious, sad, relieved.
Some dash, others are sauntering along.
I see pregnant women waddle in
and come out with bundles of joy.
Phones are ringing, worry, laughter, children crying
who wanted to go before they came.
Now someone’s cursing
“Space but no spaces,
lines but no ends,
pay-machine
but no change.”
I am very important – people would be angry
if I wasn’t here. I’m taken for granted!
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But when I feel downtrodden, unloved, forgotten
under the weight of traffic, I remember
when there were fields around here:
bird-song, sheep baa-baaing, herds of cows,
rumbling tractors and horse-drawn carts,
family picnics and the shouts of ball games.
I remember the charity days: people dressing up and stalls.
I remember the nurses’ home and sanatorium,
tuberculosis patients getting the air.
Or, when I feel downtrodden, unloved, forgotten,
I can dream of waking on Christmas morning
full of snow – with not a single tyre track.
I can dream of waking re-surfaced with sleek black tarmac
and flashy yellow lines showing patients where to park
– or that Santa has left me covered with sports cars!
Perhaps I could retire somewhere hotter, less wet?
Or move to a residential area and make friends.
But more than anything, I dream
of no pain being given out to anyone.
I dream of every family
who went in worried
returning to their car
with a smile on their face.
I dream of all those moments
when I am a garden
of good news.
Written with Caroline Hawkridge, Writer in residence
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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
12
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 contact me by leaving a message 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.
13
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 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!
14
Stress 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. 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 third Friday of the month at
1pm (p14) here at NAC but there are also regional meetings (p15)
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
15
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.
16
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 third 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: 07715330814 Brenda Winslade Wigan: 01257 426902 John Barker West Midlands: 01384 235438 Jean Jones East Midlands: 01933 399042 Kate Montali London: 07917 899089 Bart Govaert Yorkshire: 0161 291 5866 Lin Holding Denton
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News & Diary 12 – 13th October. UK Fungus Day. Events held around the UK
and at Manchester University.
Ray Robinson
Some of you may recall Ray Robinson who regularly
attended our meetings with his wife when we first started
in 2009. Sadly after a long and courageous battle with his
disease he died on 29th May 2014.
18
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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20
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.
21
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!
22
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]
23
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Contents
Schools Artwork ....................................................................... 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 ................................................ 11
Phone buddies ....................................................................... 12
Fundraising ............................................................................. 13
Stress ...................................................................................... 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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