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Aspergillosis Community
Booklet Winter 2015/16
National Aspergillosis Centre
Wythenshawe Hospital
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Community Poem Life line part 1 (with Chris Harris)
We’ve found ourselves a little niche, A place to enjoy
friendship and peace, Like a warm blanket they surround me, Makes
me realise how valuable support can be. Diagnosis of this disease
was rather frightening, But now our journey has proved
enlightening. The focus is not just for those who suffer, We
support the supporter who helps us recover. There have been times
we have felt such frustration, This is now replaced with
stimulating conversation. We no longer have that feeling of
desperation, Now we have access to vital information. We sit and
chat over sandwiches and tea, Then it’s time to find out what the
talk will be. Information and advice from invited speakers,
Providing news on drugs and methods to treat us. We learn
techniques for clearing our chest And the reason we have to have so
many tests. Information on problems moisture can cause When drying
our clothes on maidens indoors. Travel tips and sun protection when
outdoors, Avoiding the build-up of dust and mould indoors. The
gardens a good place for minimising stress, But take care of damp
leaves when clearing that mess! ->p23
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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 computers there
is the Aspergillus Website www.aspergillus.org.uk.
This booklet is the idea of the Patients & Carers Support
Group that meets every first 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.
http://www.aspergillus.org.uk/
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Questions & Answers Listening to your comments about our
service is a very important way we can improve. If you have any
comments please let us know at 0161 291 5866 (answerphone out of
hours) or [email protected] or send a letter to Chris
Harris, National Aspergillosis Centre, ERC, University Hospital of
South Manchester, Southmoor Road, Wythenshawe, Manchester M23
9LT
We will reply using your chosen method – phone, email or letter.
We may even pick up on a topic you have brought up and use it in a
future Community Booklet or Meeting.
What to ask? You can ask about anything but here are some
suggestions:
• You may be unsure about something mentioned in your recent
clinic visit – we can refresh your memory privately.
• You may find something we do could be done better and might be
able to suggest we do something differently.
• You might want more information about something – treatment,
support, community meeting
The list is endless!
mailto:[email protected]
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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. Many of us also like to feed wild birds in the
garden. This can be very therapeutic but take care to keep the
feeders clean and avoid the build-up of droppings so that you don’t
encourage mould growth. Facemasks are available that reduce the
risk of inhaling fungal matter. If purchasing ensure the facemask
conforms to FFP2 or FFP3 regulations.
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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 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.
http://www.isse.org/
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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 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.
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Fundraising for FIT
www.fungalinfectiontrust.org/supporters.html
Darren McNeil raised £1298 cycling from Paris to Nice.
Fiona Macleod raised £325 with a 10k run.
Dr Jenny raised £4000 by running the London Marathon wearing a
mushroom hat!
If you prefer shopping we also have Trevor Barnes selling goods
on eBay in aid of FIT (http://ebay.eu/17jlaRg). Trevor has raised
£100 so far
Don’t forget our ribbons available at the WRVS teabar in the
NWLC clinic waiting area. £1 each.
Make cheques out to ‘Fungal Infection Trust’
Donate online at http://www.nacpatients.org.uk/donations
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.
http://ebay.eu/17jlaRg
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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
or download and we will make copies available at our support
meetings on the first Friday of each month from February 2016. 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.
http://www.blf.org/
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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 (pick up a ticket in the meeting) 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 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.
New group in Scotland! Contact Francis Gallagher 0161 291 5866
or [email protected]
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 & Ann James
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News & Diary Patients & Carers meeting at 1pm Altounyan
Suite, NWLC (20 yards from NAC clinic) on first Friday of every
month
1st January 2016: No meeting
5th February: Medical Mycology students talk to us about
themselves and mycology in their countries
4th March: Probably held at Advances Against Aspergillosis
Conference, GMex, Manchester. We will try to get your questions
answered by an expert
Our Reseach This year has been a terrific year for our research
aims as we have seen ££multi-million investment by Manchester
University into supporting our new multidisciplinary research
organisation Manchester Fungal Infection Group (MFIG), Fungibrain
(http://www.inflammation-repair.manchester.ac.uk/FungiBrain/) and
fungi@Manchester http://www.fungimanchester.org/.
The work that many of the people in this clinic has contributed
blood to is leading to new understanding of CPA, ABPA and SAFS such
that we now think they may be closely linked. For more information
come to our Patient Community Meetings (page 13).
http://www.inflammation-repair.manchester.ac.uk/FungiBrain/http://www.inflammation-repair.manchester.ac.uk/FungiBrain/http://www.fungimanchester.org/
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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.
Next of kin: We need help It may seem odd but as a national NHS
service we usually only see our patients every few months for
regular checks. This means that should the worst happen we are
often not informed of cause of death. That information is important
for our research into helping people live longer and service
statistics. We would be most grateful if you could let us know at
[email protected] or 0161 291 5811.
Thank You.
mailto:[email protected]
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Caring for Carers British Lung Foundation provide a range of
help and advice for carers.
Carers commonly feel alone or neglected, frightened or lost but
there are support organizations you can contact (see below) and BLF
provide a large range of services that are invaluable.
They provide an extensive booklet entitled ‘Looking after
someone with a lung condition’ that you can have posted out to you
free of charge if you phone them on 03000 030 555.
Did you know you can claim carer’s benefits (£61 a week) NI
credits and grants to help with various needs such as a holiday, a
computer? Carer’s 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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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!
NOTE: we know that dust can harbour fungal spores, so even if
you have an artificial Christmas Tree, take care if it has
accumulated dust in the loft!
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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.
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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]
Community Poem
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Life line part 2 (with Chris Harris)
We exchange our stories and latest news, Encourage each other to
express their views. Understanding fungal diseases so complex and
rare Is the special bond our little group share. We search for
information about new technology Understanding the need to research
this speciality Online we find out about the latest fundraising
events That will help to support new fungal developments Despite
the fact that few have heard of Aspergillus, We are spreading the
word like the fungus that got us. Our personal experience has
created a strong unity, And now we are reaching out to the wider
community. We’ve been comrades for over five years, Shared our
problems, worries and fears. It’s uplifting to know that help is at
hand, Especially from people who understand. A hidden gem we hope
will mushroom And that a cure will be found for us soon. Or
something that helps us all to thrive, Keeping us healthier and
very much alive. We are all held together by a unique mutuality.
Learning self-help and testing our fungal agility. So it’s really
worth making that monthly trip To get our fix of comradeship!
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Community Poem
....................................................................
2
Questions & Answers
...............................................................
4
Gardening Hazards
...................................................................
5
What is Aspergillus?
.................................................................
6
Ask for a Leaflet
.......................................................................
7
Be Aware: Damp Homes
.......................................................... 8
Phone buddies
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10
Fundraising for FIT
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11
Living with a lung condition
................................................... 12
Online communities
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13
No computer? No Problem
.................................................... 13
Local Support Groups
.............................................................
14
News & Diary
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15
Our Reseach
...........................................................................
15
Contact details
.......................................................................
16
Caring for Carers
....................................................................
17
Seasonal well-being
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Community PoemQuestions & AnswersGardening HazardsWhat is
Aspergillus?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
us...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
cavi...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
...
Ask for a LeafletHow 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-compromisedA 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
Sp...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?
Be Aware: Damp HomesPhone buddiesFundraising for FITLiving with
a lung conditionOnline communitiesNo computer? No ProblemLocal
Support GroupsNews & DiaryOur ReseachContact detailsCaring for
CarersLive Christmas Tree?
Seasonal well-beingGoing 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.Live
Well Sleep well, set a routine to help you relax. Get some fresh
air when the weather is nice!Benefits
