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Aspergillosis
Community
Booklet
Winter 2014/15
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 a finalist.
Note that this was a 3 dimensional picture made out of cut-
up drinking straws – ingenious!
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
computers 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 end of autumn as far as fungi are concerned might be
said to be once temperatures drop and the amount of
decaying plant matter starts to fall. Once the first frosts of
winter have struck we usually see a large drop in the number
of fungal spores present in the outside air. For some that
might mean a reduction in the irritation of their airways and
thus breathing gradually becomes easier – but always keep
your medication handy as there are always days when spore
numbers climb again.
Days in the garden might be more comfortable provided you
can tolerate the cold of course! The cold can make breathing
uncomfortable for some unfortunately.
Not all fungi mind the cold. Lawns covered with snow are
occasionally affected by the growth of fungi underneath the
snow – the damage is only revealed once the snow has
melted. ‘Snow mould’ leaves bare patches in your lawn.
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.
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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?
7
Be Aware: Damp Homes As winter sets in we close our windows and can no longer dry
our clothes outdoors. For those with a tumble dryer the
solution is easy (provided it is a condensing type or they
ensure the vent exhausts outside), but what about those
people who have no dryer?
Many dry their laundry indoors and on radiators but there is a
hidden problem with that approach – mould!
Older homes tend to be designed with chimneys in
downstairs rooms, some even older homes have them
upstairs too. They were also built with wooden door and
window frames which were impossible to make airtight, so
there were plenty of ways for the inside air to escape.
The snag is that during the 1970’s onwards we have all
progressively installed central heating, blocked up chimneys,
installed sealed double glazing and even solid flooring that
allows much less airflow than the older floorboards. The loft
has been filled with inches of insulation and wall cavities
filled with more foams and fluff. We are nice and warm but
there is no air circulating!
During the summer we tend to open windows so air
circulation is fine, but once we have sealed ourselves in
against the cold there are few ways for warm, moist air inside
a home to escape. If we add lots more moisture by drying
laundry indoors it may initially make no noticeable difference
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to our homes, but once the heating is off at night and
temperatures drop it isn’t long before moisture starts to
condense out of the air, just like on a dewy morning in spring
outside. Moisture settles in carpets, on walls and starts to
encourage the growth of moulds. Result: damp and
allergenic moulds that will make asthma and allergies worse.
We can prevent these problems by using tumble dryers,
opening windows or using exhaust fans when we are
generating lots of airborne moisture indoors (e.g. showers,
cooking, laundry). Close doors to restrict damp air to small
parts of the house and VENTILATE those areas thoroughly
until no damp remains.
There are several types of mechanical ventilation that are
cheap to run and will go a long way to prevent damp in a
‘sealed up’ home. They cost a few £100 to install but prevent
£100’s of damage due to damp. One type even saves most of
your heat while it circulates fresh, dry air into your home –
that type could even pay for itself in 3 – 5 years by cutting
heating bills. Contact our partner Institute ISSE
(www.isse.org) for advice.
9
Creative Writing 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.
Hope is… (abridged)
Hope is when someone listens to me,
when they hear what I say.
Hope is when tomorrow is another day
and not just yesterday again.
Hope is that a solution may be found
to release me from the pain,
that there’s better times to come.
Hope is having another day to spend
with my children and grandchildren.
Hope is friends out there we can turn to
for ‘been there done that’ advice
& ‘this is how I coped with it’.
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Hope is successful treatment
and seeing tomorrow’s dawn and sunset.
Hope is breath for many years to come.
Hope is not for today. For today, to get out of bed, is all I can do
and its hours and hours before I can lay down my head.
But hope is for tomorrow, when all will be well
and this is the story I myself will tell.
Hope is like the sea that touches every part
of our planet no matter where patients live.
Together we can build “A SEA OF HOPE”
that anyone & Everyone can either dive
into or just “Dip their own toe”.
Hope is when someone listens to me,
when they hear what I say,
when they hear what I say.
written with Caroline Hawkridge, Writer-in-Residence,
11
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 leave me 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.
12
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
(www.fungalinfectiontrust.org) is a major supporter of the
Aspergillus Website (www.aspergillus.org.uk) and its sister website
for patients and carers at www.nacpatients.org.uk.
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’
For those with mobile phones you can donate by
texting ASPE14 £5 to 70070. You can text £1, £2, £3, £4,
£5 or £10. We get 100% of your donation plus gift aid if
you are a taxpayer.
Thank you!
13
Living with a lung
condition The British Lung Foundation (www.blf.org) provides a wide range of information for people with lung health problems.
This range of booklets covers exercising with a lung condition, how to access exercise and eating well.
Another useful booklet is entitled ‘Living with someone
who has a lung condition’ and contains a lot of useful information for the carer/partner. Each booklet is available for immediate free order and we will make copies available at our support meetings on the first Friday of each month from February 2015. BLF also remind us that people with lung conditions qualify for the valuable ‘Flu immunisation which is recommended. Also remember that you qualify for the ‘Winter Fuel Payment’ if you are aged over 60.
14
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.
15
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 Patients & Carers Support Meetings – all in the Altounyan
Suite, NWLC close to clinic. 1pm, Friday.
December 19th Christmas Quiz
No meeting in January 2015
February 6th 2015
We will be arranging an opportunity to tour the diagnostic
labs here at University Hospital of South Manchester. Let us
know if you would like to join us by calling 0161 291 5866 or
email [email protected]
17
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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19
Seasonal well-being
With the leaves falling from the trees and night’s drawing in,
many people – particularly those with lung disease – will
recognise it's the time of year to get vaccinated against flu.
Flu (the short name for influenza) is unpleasant for anyone
who catches the virus. It affects people of any age and gives
you a sudden fever, chills, headache, aching in the muscles, a
dry cough and often a sore throat. It can make you feel very
weak and can take at least a week to pass.
For people with long-term health problems, such as asthma
or chronic obstructive pulmonary disease (COPD), and older
people, it can be even more serious.
Getting a vaccination can protect you from unnecessary
illness. The vaccination is given by an injection which will take
a week to 10 days before it protects you from catching flu. It
will not only protect you, but may also help to protect your
colleagues, friends and family.
20
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!
21
Live Christmas Tree?
If you are having a live Christmas
Tree this year and you have
fungal allergies or asthma, note
that the tree will start to
produce fungal spores after
about 10 -12 days after the date
it was cut down. You might be
best advised to remove the tree
from the house after that time!
Other indoor plants will so the same if they start to die back
so keep them well trimmed and fortified.
Some people report that a layer of stones or gravel on the
surface of the pot compost beneath the plant helps prevent
the release of mould spores as well as prevent the compost
drying out too quickly.
If in doubt, remove the plant from the house!
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
Phone buddies ....................................................................... 11
Fundraising ............................................................................. 12
Living with a lung condition ................................................... 13
Online communities ............................................................... 14
No computer? No Problem .................................................... 14
Local Support Groups ............................................................. 15
News & Diary ......................................................................... 16
Contact details ....................................................................... 17
Carers ..................................................................................... 17
Seasonal well-being ............................................................... 19