Aspergillosis

Community

Booklet

Spring 2015

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

layers of paper

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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.nacpatients.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.

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Questions & Answer Sheet

Enclosed in this booklet is a form for any questions you may

have about any part of the services that are offered by the

National Aspergillosis Centre. You can return this

anonymously if you wish and full details on how to get it to us

are on the form.

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!

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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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Gardening Hazards

Spring is a time when many of us start to think about clearing

out greenhouses and sheds in preparation for the new

growing season just around the corner which is a very healthy

pastime for all of us. However those who may be sensitive to

fungi should take a moment to think about which activities

may raise dust and therefore moulds into the air.

Anything that can rot – wood, paper, wood chippings,

composts – will have carried on doing so over winter. Take

care when disturbing anything, particularly indoors.

Even new bags of compost and chippings may be full of

mould spores – open them carefully and do it outdoors

where there is plenty of ventilation. Certainly do NOT smell

the compost like we see TV gardeners do!

Soil is a perfect breeding ground for moulds – if you are

disturbing it wear a facemask or get someone else to do the

mouldy jobs for you. Keep your asthma medication close at

hand.

Facemasks are available which offer some protection – see

the article on facemasks elsewhere in this booklet.

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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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Facemasks There are several models on the market that can be effective

at cutting down the amount of moulds you breathe in. This

can be important if you are sensitive to fungi and you are

carrying out gardening jobs or spring cleaning outside or in.

The dust raised into the air by these activities is considerable.

The type of facemask you use is important. Check that it

conforms to the filtration standard FFP2 or FFP3 and ask for

our facemask leaflet available in clinic.

There are now facemasks available with a valve that opens

when you exhale. Users comment that this is an advantage

over other masks as it enhances comfort and stops it getting

damp and useless.

Some people may find that their eyes sting when there is a lot

of dust in the air. This is a common feature of allergy to dust

– often moulds. Full face masks can be bought to protect your

eyes and your doctor may be able to recommend medication.

Suppliers are easy to find online (e.g. Amazon,

www.allergy.uk.com/) but can be tracked down in your local

DIY store (remember to ask for FFP2 or 3).

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Appreciation of the Carer We are so often ill, our breath coming in gasps,

We fear for ourselves, plead for mercy,

Those breaths we take fight us with wheeze and rasp,

Our plight is hard; our mood is hard and bitchy.

But wait a moment; pause a minute, look around, do you see?

Those that love us, care for us, nurse us and stay by our side,

Those loved ones, siblings, partners or spouse, standing closely,

Holding our hand, mopping a brow, hiding how they cried.

So while we suffer, puff and pant, do not grumble, do not rant,

There is strength beside us, a hand to support, an ear to listen,

Our loved ones who watch us suffer without showing a tear,

Our life is hard, full of despair, but do we see the eye that glistens?

My wife is my rock, my oxygen mask, my faithful nurse,

I am lucky, I’m not alone, I have someone who cares,

Suffer we do, often it’s true, but don’t moan, don’t curse,

One of us is ill but both feel the pain, the suffering we share.

Friend or family, brother or son, husband or wife,

We all must remember those who hide their tear, hide their pain,

They sacrifice their hearts, to accompany us in our plight,

So keep in your hearts a smile, for those who love us, with nothing

to gain.

Chip Chapman (aspergillosis patient), 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 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 Dr Jenny Long is running the London

Marathon for the Fungal Infection Trust

on April 26th

. This will be Jenny’s first

marathon so she will need all the

support she can get. Keep an eye out

for her mushroom hat!

We also have fantastic support from a

group of enthusiastic runners

(Run4Fun) led by Wendy Fuller in

memory of Ann Barnes.

If you prefer shopping we also have

Trevor Barnes selling goods on eBay in aid of FIT

(http://ebay.eu/17jlaRg) – and 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’

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.

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Caring for someone with

a lung condition British Lung Foundation also provide a range of help and

advice for carers.

Carers commonly feel alone or neglected, frightened or lost

but there are support organization you can contact 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.

Subjects include:

First steps for carers

Practicalities

Supporting the person you care for

Supporting you

Studies have shown that the carers is often the last person to

ask for help, sometimes because they don’t realise or don’t

want to admit that they have that role – BLF support is

excellent for rebalancing your life.

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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: Brenda Winslade Wigan: John Barker West Midlands: Jean Jones East Midlands: Kate Montali London: Bart Govaert Yorkshire: Lin Holding Denton Bristol: Keith & Ann James

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News & Diary Sadly one of our longstanding

patients Ann Barnes passed away

in December 2014.

To the right is one of the flower

arrangements at her funeral – in

the shape of a teddy bear!

Patients & Carers Support Meetings – all take place in the

Altounyan Suite, NWLC close to clinic. 1pm, first Friday of

every month.

Christmas Quiz in December 2014 was won by Keith Barrett-

Bee.

NOTE: There will be no meeting on March 6th 2015

The first Friday of April falls on Good Friday, so we will move

it to the previous Thursday 2nd April. This will hopefully be an

opportunity to tour the diagnostic labs here at University

Hospital of South Manchester. We will meet at reception of

the Education & Research Building, UHSM, Wythenshawe

Hospital at 1.00pm for drinks & sandwiches.

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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Puzzler: Better Health Most answers are related to what we advise our patients to

do to get better health

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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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Spring Cleaning

Spring is a time many of us get down to a deep clean or

reorganise at least part of our homes. It seems to be

something common to most of the world once winter is over

– and we do know it is good for our stress levels and

promotes a feeling of well-being to clean and declutter!

People who are sensitive to moulds may find this time highly

irritating to their breathing as a lot of dust (which contains

lots of moulds including Aspergillus) is sent into the air.

We would suggest cutting down on dust by damp dusting,

opening windows on BOTH sides of your home to promote a

good draught of air through your rooms while cleaning

(carrying the dust OUT of your home while you work) and a

good FFP2/3 facemask will help!

There are quite a few cleaning products that claim to be anti-

mould but you will find these are all mainly 5% bleach and a

few drops of detergent (soap liquid). This will effectively kill

moulds and cut down on further fungal growth BUT the

effects are quite short lived and a fresh mix needs to be

prepared every day.

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Where is the Altounyan Suite? This is where the Patients & Carer Community Meetings take

place once per month.

As you picked this booklet up in the waiting room of the

North West Lung Centre (Ground Floor) I will assume that you

can find your way back there to attend a Patient & Carers

Community meeting!

You will remember turning off the main hospital corridor,

passing through double doors and then finding reception in

from of you where you checked in. The waiting room is

through the doors to the left but there are double doors to

the right of reception. Go through those doors and proceed

right down that corridor to the doors at the end, past the

Lung Function rooms on the left.

Go through those doors and you will see another pair of door

in front of you. These are locked but you can gain access by

pressing the button on the intercom.

If it is the day of a meeting there will now be signs directing

you through a further two sets of doors lying straight ahead –

you will find yourself in a glass roofed atrium where we meet

for tea & coffee first. The meeting takes place through the

door on the far right – just open & enter!

Answers to crossword

1. Interactions 2.Cola 3.Warmth 4.Vaccinate 5.Exercise 6.Dust

7.Carer 8.Stress 9.Expensive! 10. Aspergillosis 11.Side-Effects

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Mushroom Risotto

4-6 portions

1 tablespoon olive oil

8oz mushroom – finely chopped

7oz long grained rice

3 tablespoon Parmesan cheese

Pepper

1. Heat oil in medium saucepan

2. Add mushrooms with 2 tablespoons water cover with lid

and simmer gently for 10 min

3. Add rice to the pan with 1 pint water

4. Cover and simmer gently for 15-20 mins until rice tender

and water absorbed

5. Stir in Parmesan and cook for 1-2 mins

Season and serve immediately or mixure will become sticky

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Contents

Schools Artwork ....................................................................... 2

Questions & Answer Sheet ...................................................... 4

What is Aspergillus? ................................................................. 5

Gardening Hazards ................................................................... 6

Ask for a Leaflet ....................................................................... 7

Facemasks ................................................................................ 8

Appreciation of the Carer ........................................................ 9

Phone buddies ....................................................................... 10

Fundraising ............................................................................. 11

Living with a lung condition ................................................... 12

Caring for someone with a lung condition ............................. 13

Local Support Groups ............................................................. 15

News & Diary ......................................................................... 16

Puzzler: Better Health ............................................................ 18

Spring Cleaning ...................................................................... 21

Where is the Altounyan Suite? .............................................. 22