Aspergillosis

Community

Booklet

Winter 2014/15

National Aspergillosis Centre

Wythenshawe Hospital

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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!

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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 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.

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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.

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.

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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.

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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,

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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 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!

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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 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.

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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 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 admin@aspergillus.org.uk

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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

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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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!

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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 helpline@blf.org.uk

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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