MAGAZINE OF THE CYSTIC FIBROSIS ASSOCIATION OF IRELAND

Future ForceFuture Force

SPRING 2004

INSIDE..NEW RESEARCH - HELIUM MRI

CONTENTS

CONTENTS

Introduction 1What’s new in 2004?

E-Interview 2Introducing Helen Whitty - Administrator in CFHouse!

Research - Helium MRI 3Exciting new research into Helium MRIDr Jonathan Dodd

Hospital Watch - The Hanly Report 4What’s it all about?Patricia Duffy

CFAI Registry - Annual Report 2003 5The latest statistics from the CFAI Registry

Homeopathy - An Introduction 6The first in a two-part look at complementarytreatments.Homeopathy Ireland

Did you know? 7Eleanor Walsh

Christmas 2003 8 & 9The unofficial Adult Group christmas party -who was there..!

Looking for a space near you..? 10Parking permits.. find that space.. get out andabout!

What we Love 10

Personal Profile 11“My New Life”Aoife Conroy

Q & A 12CF-Related Diabetes - FF talks with 2 PWCFabout their experiences

What Ails Ye? 14Motor InsuranceRory Tallon

Make A Wish 15Cormac Murray

Adult Group Issues 16Update on AG issues

Web Watch 16Continuing our search for the best and mostinformative CF websites for you!

Hygiene Guidelines - Quick Tips 17Plus a handy bookmark for you to cut-out-and-keep

Crossword 18Eleanor Walsh

Parking Permitspage 10

Hanly Reportpage 4

Q&A CFRDpage 12

INTRODUCTION

elcome to Future Force Spring 2004!Inside we‘ve an assortment of articlesto read and enlighten you about devel-opments in the CF world – particularlyhere in Ireland.

We’re reporting on some interesting Research,on Helium MRI, which Irish CF patients have beenparticipating in and we’ve also taken a look at theimplications of the Hanly Report (released 2003)for PWCF.

Ever wished you had a map of parking spaces?Well, your wish has just come true! On the CFAIwebsite you’ll find a list of Disabled ParkingSpots in Dublin City & a link to a map and list ofdisabled parking spots around Cork City. Othermajor locations aren’t available just yet but let usknow if you’d like your area featured.

How much do you know about Diabetes in CF-would you know where to start if you were diag-nosed? In our Q & A section, two readers sharedtheir experiences in coping with CFRD – from dif-ferent perspectives; one recently diagnosed andthe other has been managing CFRD since 1987!!!

Ask not what your country can do for you ………well sort of! Have you done your part and signedyour consent for participating in the CF Registry?Read an update of the Registry’s progress insideand remember to ask your CF Nurse if you’re notalready signed up! Remember, the registry is avital part of understanding trends in CF treatmentacross the country.

Our aim always is to provide feedback, adviceand share experiences with our readers on alltopics relating to the daily lives of people withCF. Simple advice from experiences learned canbe most helpful to others who have yet toencounter the same issues that others havealready tackled. Therefore FF asked Rory Tallonto investigate Motor Insurance and the issue ofdeclaring CF on the application form.

The CF Adult Group supports new job initiativesby our members. Congratulations go in this issueto Daragh McGrath in his new venture... BolandsCottage Cafe, Marlay Park. Let us know if you’vegot something in the pipeline!

You’ll find many of our regular features like WebWatch and ‘What we Love’ and some funny facts

to keep you entertained over your Scandishake –sorry Coffee Break!! There’s a Rogues Galleryfrom our Christmas party that took place inDecember - is your mug shot here???

Thanks to you, our contributors, we’re surethere’s something new and interesting for every-one in this issue - if you’ve something you’d likeus to research, or have an experience you’d liketo share…. sit down and send it to us! Our mail-bag is always open..

ps Happy 40th Birthday to the UK Trust !

SEND ALL LETTERS/ARTICLES TO

The Magazine GroupFuture ForceCF House24 Lower Rathmines Rd.RathminesDublin 6

Email: futureforcemag@hotmail.com

CREDITS

Future Force is the property of:The Cystic Fibrosis Association of Ireland,CF House,24 Lower Rathmines Road,Dublin 6

Tel: 01-4962433 Fax: 01-4962201

EDITING STAFFJean Byrne Patricia Duffy

DESIGNJean Byrne

MAGAZINE COMMITTEEOlivia Coen, Daragh McGrathMikey O'Dwyer, Diarmuid Meade, Shona Stewart, Rory Tallon

Centre Page photographsMikey O'Dwyer & Carol Burchael

The views and opinions expressed in thismagazine are not necessarily the views ofThe Cystic Fibrosis Association of Ireland.

HELLO EVERYBODY!

1

In this issue Future Forcetalks to Helen Whitty.

FF: Where are you from?

H: Co. Wexford

FF: What is your back-ground?

H: My Previous backgroundwas in hotel management. Iam currently studying aBA in Psychology.

FF: When did you take upposition?

H: September 2002

FF: Can you describe what

your position entails?

H: As administrator at CFHouse, I am responsible forthe implementation and maintenance of the day-to-day financial matters of theAssociation along with t h eroutine administration of theoffice, inclusive of particularprojects and events; AnnualConference, InternationalWalk and other Fundraisingevents.

FF: What would you likePWCF (people with CF) tothink about the Association?

H: To view the association asa support network for PWCF.It is their association andshould be used as an envi-ronment where PWCF canvoice their concerns andraise awareness of their indi-vidual problems and needs.By establishing and iden-tifying such needs, the asso-ciation can then try to cam-

paign and lobby for betterfacilities and services forPWCF.

FF: What are you looking for-ward to this year in theAssociation?

H: This year brings a lot ofchange and positivity to theAssociation with the pendingresults of both the internaland external review. Thelong awaited Transplant unitat the Mater Hospital and theappointment of a new CEO.

FF: What do you like mostabout your work in CFHouse?

H: Having the opportunity towork with a wide spectrum ofpeople from members of theAssociation to networkingwith medical personal and arange of voluntary bodies.

E-INTERVIEW WITH HELEN WHITTYAdministrator in CF House!

E-INTERVIEW

Quick Fire Questions....

FF: Did you make a New YearsResolution? Have you kept it?H: Yes – to reduce my choco-late intake and get fit – Have Ikept it?? U n f o r t u n a t e l yNot!

FF: Which soap makes youmost want to chuck yourremote control at the telly? FairCity, Ros na Run, Corrie orEastenders?H: Fair City!

FF: Best concert /live actyou’ve seen?H: U2 – Popmart

FF: Least favourite celebrity?H: Hmmnnn - ChristineAguleria is a tad irritating!

FF: Best holiday destinationyou’ve visited?H: South Africa.

FF: Favourite international cui-sine? H: French/Italian

FF: Colin Farrell or Brad Pitt?H: Either!

FF: Favourite Sport/Team:H: Hurling – Wexford ofCourse!

The new message board on theCFAI website is becoming more &more popular with lots of usefulinformation being exchanged.

With different sections for CFAdults, CF Kids, Families & CyberCampus students, there’s some-thing for everyone.

Go to the CFAI website and clickon CF Community Forum.

www.cfireland.ie

2

In t roduct ionIntroduct ion

The Departments ofRadiology and RespiratoryMedicine at St. Vincent’sUniversity Hospital (TheNational Referral centre forAdult Cystic Fibrosis) haveundertaken a study to assessthe potential use of heliummagnetic resonance imagingof the lung in cystic fibrosis.

What is magnetic resoWhat is magnetic reso--nance imaging?nance imaging?

Traditionally called ‘MRI’, thisimaging test applies a mag-netic field to the body. Thisinduces the cells in the bodyto become ‘magnetised’briefly causing them to giveout a signal. This signal isthen picked up by detectors inthe MRI machine. Thesedetectors convert the signalto images of the lung by com-puter.

Imaging of the lung has tradi-tionally relied on X-ray tech-nology. This was due to thefact that MRI could not beused for imaging air becauseair is hard to magnetise. Anew technique, which usesthe gas Helium, has made itpossible to evaluate the air-ways. Helium is well-knownto us: it has been used exten-sively by sea divers. It is ascentless, so-called “inert”gas, which means that it doesnot react with anything.

AdvantAdvantagesages

This technique is capable ofobtaining new, detailed infor-mation on how the lung func-tions, such as how the airflows in the bronchial tubes,how certain areas of the lungare oxygenated and how oxy-gen is transported into theblood. Currently CXR andcomputed tomography (CATscanning) are the existingimaging tests in cystic fibro-sis. They are very good forshowing anatomical abnor-malities. However they do notshow areas of the lung thathave poor oxygen delivery. Itis our hope that Helium MRIwill show these areas, whichmay look normal on CXR andCAT scanning. This com-pletes the spectrum of imag-ing of the chest for MRI tech-nology, without the need forradiation.

The study protocolThe study protocol

The purpose of this study wasto evaluate the potential roleof Helium MRI in patients withcystic fibrosis. Helium MRItechnology is highly sophisti-cated and expensive. It isonly available in certain cen-tres in Europe. We comparedthis new technology with thebest existing diagnostic test -CAT scan, which is used toguide decisions on the besttype of treatment for patients.CAT scanning and pulmonaryfunction testing took place in

the X-ray department of St.Vincent’s University Hospital,Dublin. Helium MRI technolo-gy is not available in Irelandcurrently. Therefore we trav-eled with patients to theSection of AcademicRadiology at the RoyalHallamshire Hospital, inSheffield, England where thistechnology is currently underevaluation. In Sheffieldpatients underwent theHelium MRI scan protocol forCF lung disease. Currentlydata analysis is underwaycomparing these MRI imagesto those of CAT scanningimages but no results areavailable as yet.

ConclusionsConclusions

There is almost no informa-tion in the medical radiologyliterature on the use of MRIimaging of the lung in cysticfibrosis. The Departments ofRadiology and RespiratoryMedicine at St. Vincent’sUniversity Hospital hope to bethe first group in the world topublish data directly compar-ing Helium MRI with CATscanning in cystic fibrosis.

Helium Magnetic Resonance ImagingHelium Magnetic Resonance Imagingof the Lung in Cystic Fibrosis of the Lung in Cystic Fibrosis

Dr. Jonathan DoddRadiology Dept. St Vincent’s University Hospital

RESEARCH

3

Future Force acknowledgesthe valuable contributionthat PWCF make to researchprojects such as this one.Without your willing partici-pation medical understand-ing could not be advanced.

What you need to know aboutthe Hanly ReportThe Hanly report is the 3rd in aseries of 3 reports that weredesigned to assess the Healthof the Health service! Andmake recommendations abouthow to make it better!

The Hanly report was con-cerned with Doctors andHospitals - something wecould all write our own reporton! The Report was written bya committee (The Task Forceon Medical Staffing). Their jobwas to find a way for theHealth Service in Ireland tocomply with EU rules regard-ing Doctor’s working hours.

These EU rules are known asthe ‘European Working TimeDirective’ (EWTD). The rulesstate that Hospital Doctorshours are too long and need tobe standardised aroundEurope.

You’ll be pleased to know thaton average Doctors work 75hours a week. The EWTDstates that this needs todecrease to 58 hours a weekby August this year. The realgoal is 48hours by 2009.

It’s also important to remem-ber that there are differenttypes of Doctor in our hospi-tals. There are consultants andnon-consultant hospital doc-tors (this includes all otherdoctors).

At present the non-consultantdoctors are in the majority,they work longer hours onaverage and are more likely tobe on call. In contrast, the con-sultants are in the minority,

they work fewer hours on aver-age and have more experienceand expertise in their specificareas.

The Hanly Report says that ifwe want to reduce the hoursworked by the NCHD’s then weshould increase the number ofconsultants until there is a bal-ance. The hours worked by theconsultants should change toinvolve more on-call duties. Italso recommends more organ-ised training for doctors sothat their training is co-ordi-nated with the needs of theHealth Service.

In considering hospitals, thereport looks at acute (A&E)hospital services, local hospi-tals and National Hospitals.

International Research showsthere are improved outcomeswhen a patient attends a serv-ice where care is provided by ateam of different HealthProfessionals including a con-sultant. Outcomes are alsobetter when this team haveplenty of experience fromtreating a large volume ofpatients. It proposes thatpatients who need specialistservices (including major

A&E) should travel to Regionalservices or a National Hospitalfor their specialist treatmentwhere there are multidiscipli-nary Health ProfessionalTeams and larger volumes ofpatients being treated.

Ideally local hospitals shouldhave diagnostic services (x-ray etc) and improved propor-tions of consultants to providecare. It is recommended thatpatients should receive theirminor (A&E) accident and ill-ness care, medical and surgi-cal day procedures, outpatientand pre & antenatal care fromlocal hospitals. The local hos-pitals would need to have asufficient volume of patients tokeep doctors experienced intreatment, and to maintain abroad range of services.

All of the hospitals, at local,regional and National level willbe co-ordinated by a Chiefexecutive. There should beequal access to quality carewhether in Public or Privateservices.

What does it mean for you?If the recommendations of theReport are implemented, it willmean that gradually Doctorswill be working fewer hours,have improved trainingarrangements and betterprospects for becoming con-sultants. There will be agreater number of consultantson hand to guide doctors inclinical decision-making. All ofthe above means improvedwell-being of doctors and safercare for patients. It’s also goodnews for the recruitment ofmore doctors and the retentionof current staff.

HANLY REPORT

Hospital Watch - The Hanly Report

4

With a greater number of con-sultants working more hoursincluding being on-call, yourchances of being seen by aConsultant (fully trained expe-rienced doctor) will increase.

For specialist treatment youwill be attending a Regional orNational service, where thereare multidisciplinary HealthProfessional Teams and largervolumes of patients beingtreated.

Changes in A&E care and

hopefully changes in waitingtimes because the patients willbe attending either local hospi-tals or major Acute Hospitaldepending on severity of situa-tion, rather than all waiting inAcute Hospitals.

Improvements to local hospitalservices through improvedstaffing levels and resourcesto cater for a broader range ofmedical fields.

For further information, con-tact your local Health Board. If

you would like to read theHanly Report in full, go to www.maternitymatters.net/materni-ty_hanley_report

CFAI REGISTRY

5

Glossary

Hanly Report = Report of theNational Task Force onMedical Staffing

EWTD = European WorkingTime Directive

NCHDs = Non-consultant hos-pital doctors

The CFAI Registry AnnualReport for 2003 was publishedin December. The Reportdescribes the activities of theRegistry throughout 2003.

The AIMS OF THE REGISTRYcan be summarised as follows:

OO To provide a reporting sys-tem for those who care forPWCF to better view/visualisetheir patient recordsOO To provide a central databaseof information about all PWCF;and to use that data for detailedanalysis of the many clinicalaspects of CF.

At present it is possible forconsultants to view concisereports regarding previoushospitalisations, pulmonaryfunction and other tests, treat-ments and their outcomes fortheir patients. With increasednumbers of patients enrolled, itwill be possible to view trendsacross a clinic e.g. examine thefrequency of exacerbations inpatients who are given a partic-

ular treatment.

The ongoing work of theRegistry is dependant onsecuring funding from theDept. of Health and Children.

In the coming year, theRegistry Director will continueto co-ordinate the enrolment ofthe CF Population with the helpof a Clinical ResearchAssociate and CF SpecialistNurses who have participatedin entering patients data.

Readers who would like tolearn more about the Registryare invited to contact theDirector of the Registry, MsLinda Foley at CF House.Alternatively check out theRegistry website at

www.cfairegistry.orgIf you haven’t yet signed yourconsent form ask your CFnurse about it at your next out-patients appointment. She willanswer any questions youmay have.

CFAI REGISTRY UPDATE - ANNUAL REPORT 2003

QUICK STQUICK STAATS...TS...

There are approximately1,100 PWCF in Ireland.

Around 20% of PWCF inthe Irish population havebeen enrolled in theRegistry.

It is expected that the pro-portion of Adults in the CFpopulation will approach50% by 2008.

The number of childrenwith CF is expected toremain constant with thenumber of births diag-nosed by newborn screen-ing matching the numbertransferring to adult care.

The number of Adults isexpected to grow.

HOMEOPATHY - An Introduction

HOMEOPATHY

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Members of Homeopathy Irelandwrote the following article. Theinformation featured is availableon their websitewww.irishsocietyofhomeopaths.com

What is Homoeopathy?

Homoeopathy as we know ittoday has been used for thepast 200 years. A Germanphysician called SamuelHahnemann developed it as asystem of medicine. The wordHomeopathy comes from theGreek and means ‘similar suf-fering’.

How does Homoeopathy work?

The most fundamental rule ofHomeopathy is ‘The Law ofSimilars’. Put simply it means‘like cures like’. Homeopathsrecord the totality of a person’ssymptoms and individual char-acteristics and then match thispicture to a substance that isable to produce similar symp-toms in a healthy person. Forexample, a homoeopathicallyprepared coffee (coffea tosta)may be used to treat certaintypes of sleeplessness. Usingthe ‘The Law of the MinimumDose’ very, very tiny doses ofthe substances are given tostimulate the body’s own natu-ral healing ability.

What are the benefits of usingHomeopathy?

Homeopaths are interested inyou as a person and spend along time finding out aboutyou. Spiritual, mental, emotion-al and physical aspects are allconsidered important, becausethey are all inter-connected.Symptoms are the body’s way

of warning that all is not welland attempting to restore bal-ance. They act as helpfulguides to selecting the correctmedicine. Homeopaths, howev-er, recognise that your symp-toms are not the cause of dis-ease. The most appropriatehomeopathic medicine bringslong-term relief and a sense ofwell being because it treats notonly your symptoms, but alsothe underlying ‘dis-ease’ thatproduced them.

Seeing a homeopath

When do I need to see a home-opath?

If you have a serious or recur-ring condition or you have hada number of acute illnessesrecently, it is always best to seea qualified homeopath.Remember homeopathy is acomplete system of medicineand can be used to treat any-thing, even problems that haveno clear diagnosis, because ittreats the individual rather thanthe disease.

What happens when you visit ahomeopath?

You begin by telling the home-opath what is troubling you. Itis helpful if you can give asmuch detail as possible aboutyour symptoms, including any-thing that makes them better orworse. If you have noticed anyother changes in yourself(mood, anxieties, sleep,dreams, appetite, thirst, tem-perature) since the symptomsstarted; these can also be veryuseful. The homeopath will nor-mally take a full medical case

history from you and recorddetails of any previous healthproblems in your family, goingback to your grandparents. Theaim of the consultation is to getan overview, not only of yourcomplaint, but also of you as aperson.

How can I tell if the homeopath-ic medicine is working?

Reactions to homeopathicmedicines vary with the indi-vidual. Some experience aclear improvement in theirsymptoms very early on.Others find that their symp-toms worsen for a time beforeimproving (this is known as anaggravation). Still others findthat their general sense of wellbeing increases, but the symp-toms that they wanted curedstay the same. Perhaps sur-prisingly, this is a very goodsign as it shows the remedy isworking at the most fundamen-tal level and removing dis-ease.Eventually the original symp-toms should disappear.

How do you take homeopathicmedicine?

Homeopathic medicine maycome in tablet, powder or liquidform and is dissolved under thetongue. The dose should betaken twenty minutes before orafter having anything to eat ordrink, cleaning your teeth orsmoking. Coffee (includingdecaffeinated), mint (notably intoothpaste), camphor, menthol,and eucalyptus may antidotethe medicine and are bestavoided. Dental care can alsoadversely affect the medicine;so do tell you homeopath if youare having any treatment.

HOMEOPATHY

Choosing a homeopath

What are the advantages ofchoosing a registered home-opath?

Registered homeopaths willhave completed at least oneyear in practice and undergonea thorough registrationprocess that examines andassesses all aspects of theirprofessional practice andincludes a site visit. Onlyhomeopaths registered withthe Irish Society ofHomeopaths can use the let-ters ‘ISHom’ after their names.

Graduate homeopaths of theSociety must be in practice forone year, following qualifica-tion, prior to undergoing theregistration process.

Both registered and graduatemembers agree to practiseaccording to the Society’sCode of Ethics and have pro-fessional insurance.

Some health-care insurancepolicies will reimburse a pro-portion of treatment fees, pro-vided that the homeopath you

see is registered with theSociety.

If you are in any doubt about apractitioner’s credentials, youcan contact the Irish Society ofHomeopaths.

Irish Society of Homeopaths

The Society was formed in 1990and is the only body represent-ing lay homeopaths in Ireland.It currently has 297 members,of who over 70 have success-fully been accredited asRegistered Members and areentitled to use the title“ISHom”. The remaining mem-bers are either students orqualified graduate memberswho are working towardsa c c r e d i t a t i o n .

The aims of the Society are:oo To make Homeopathy acces-sible to alloo To increase awareness andunderstanding aboutHomeopathyoo To regulate standards andethics of professional practiceoo To provide continuing pro-fessional development to ourmembersoo To promote professional

recognitionoo To work towards integrationof Homeopathy within the Irishhealth care system.

For further information checkout www.irishsocietyofhomeopaths.com

The website includes a list ofISHOM registered homeopathsthat you can search by county.

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ASK THE EXPERT.....

Brenda Coller is an ISHOMregistered homeopath basedin Co. Wicklow. Brenda haskindly agreed to answerquestions from FF readerson homeopathic treatmentsthat may help alleviate someof the symptoms of an exac-erbation (chest infection) . Ifyou have any questions forBrenda please send them tothe usual FF address in timefor the autumn issue andwe’ll print them as part of ourQ&A section.

Always consult your doctorbefore making any changesto your treatment.

DDIIDD YYOOUU KKNNOOWW........?? BByy EElleeaannoorr WWaallsshh

oo Sign language was developed in the 18th century

o o Oak trees usually don't bear acorns until they are20 years old

oo The highest railway in the world is in Peru

oo There are 70 separate pieces of wood in a violin

oo Antiseptics were first used in 1865 by a surgeoncalled Joseph Lister, in London

oo Aspirin was first introduced into medicine in 1899by H. Dreser of Germany

oo A whale can swim for 3 months without eating

oo Tarot cards are the oldest form of playing cardsin Europe

oo The first postage "label" or stamp was used inEngland in May 1840

oo Moisture, not air, causes superglue to dry

8

9

PARKING

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Did you know that some people with CF are eli-gible to obtain a disabled persons parking per-mit?

So, no longer do you have to park 3 miles awayto brave the weather and traffic fumes andtrudge through hoards of busy streets barkingall the way to the bank or cinema or whereveryou want to get to. With a disabled personsparking permit you can park in disabled parkingbays - you know - the spaces that are usuallythe only free spaces left anywhere!

Your flexible friend..

The permit applies to the person with the dis-ability, not the car. This means that you don’tneed to own the car! Just bring your permit withyou and display it in whichever car you’re trav-elling - be it your parent’s, friend’s, partner’s oranyone else’s car. Probably best if you know thedriver - Future Force absolutely discouragesyou from forcing unsuspecting motorists tochauffeur you around everywhere!

There is a whole range of parking facilities avail-able to people with disabilities in towns andcities throughout Ireland. Disabled parking baysare always located in “prime” parking spotsbeside building entrances, in city and town cen-tres. In other words you can park right besidewhere you want to go - and you are entitled to

park there!

Plan your journey..

You can now plan your journey in advance.Some local authorities have lists of disabledparking spaces available on their web sites. Thelists include the name of the street and the num-ber of disabled parking spaces on it. You canfind out the location of disabled parking spacesin Dublin city and in Cork city by checking theCFAI website (www.cfireland.ie).

Information about disabled parking spaces out-side of these areas is not yet available online, soyou might need to phone ahead to the localauthority in the area you will be travelling to andthey will be able to give you information on thetype of disabled parking facilities available inthat area.

Need more info..

For more information on the parking permitscheme you can contact CF House or the IrishWheelchair Association. Information is alsoavailable in your booklet “Rights & Entitlements– A guide for people with CF and their families”.

Please note that you are also entitled to parkfree of charge for unlimited time in normal discparking spaces.

You don’t have to dread city centre’s anymore -so don’t be a hermit - get your permit !!

LOOKING FOR A SPACE NEAR YOU..?

Park Don’t Bark!

WHAT

WE

LOVE!

LOVEIT..

CADBURYS CREMEE G G S ! ! !- - - - - - -BEING A RESEARCHGUINEA PIG WHEN ITINVOLVES A PERSONALTRAINER TO TONE YOURMUSCLES !

DON’T LOVEIT..

WHEN THE LID OFYOUR COLOMYCINSNAPS OFF WITHOUTTHE COLLAR..- - - - - - -WHEN HOSPITAL BEDMANAGERS FORGETTHAT CF AND MRSADON’T MIX

PERSONAL PROFILE

11

My New Life

My name is Aoife Conroy; I am 20yrs old. I was born with CysticFibrosis, my sister Paula alsohad CF since birth but sadlypassed away in 1991 aged 16. Iam the youngest of three. I havea brother Michael who is 26 anda sister Aileen aged 25. My moth-er’s name is Bridget; my DadPaul has sadly passed away in2002 aged 63.

It was odd as my father’s healthrapidly deteriorated in 1999 thesame time as my health alsodeteriorated. It was that year thatI was admitted to CrumlinHospital with pneumonia and Ispent a month there under Dr.Canny. My diabetes was diag-nosed during that time which ledto complications with the CF. Ihad to be put on night oxygenand was admitted to hospitalwith infections for weeks at atime. It was then I realized I couldnot lead a “normal” life as myschooling had to be put aside,getting breaks at home from notbeing in hospital was my onlylife.

When I turned 18 I had to changehospitals so I moved to St.Vincent’s Hospital in 2001. I hadbeen attending there over 2years and in 2002 Dr. Gallagherput me on 24hr oxygen. He thenadvised me to go for assessmentto Newcastle. I didn’t take long tosay yes cause I knew my lifecouldn’t get any better. AtChristmas of that year I went to

Newcastle and Professor Darksaid I was going on the activetransplant list. At this stage mylung functions were 25%, whichwas very poor.

In August 2003 I was on the list 6months and no call yet. Onenight I went down to see Dside inconcert in my local hotel. I wastalking to the lads for a few min-utes and got pictures taken withthem and they signed auto-graphs. They also sang happybirthday to me, as it was my 20thbirthday just 4 days previously.Then it was time for them to startthe concert, the ballroom wasfilling up.

All of a sudden my phone rang; itwas my brother sayingNewcastle had rung looking forme. I dropped my phone, wentoutside with my friends and mamsaid “Its true; you’re going toNewcastle”. I started crying, wasrelieved but terrified. All the ladsfrom Dside kissed my goodbyeand wished me the best of luck.We went home, the crowds ofpeople started filling the housewishing me luck. Within 15 min-utes the ambulance came andmy mother and I were in Dublinairport within 2 hours. A four-seater plane then arrived to bringus to Newcastle.

We were at Freeman Hospital at 1o’clock in the morning. At 3o’clock the doctors said that thelungs were a perfect healthymatch and the operation couldgo ahead. At 5.45 in the morningthe anaesthetist put me into adeep sleep. It was a 10 houroperation, when I woke up theytook out the ventilator and thefeeling of being able to breathewas indescribable. I then spent 1day in ICU.

The next few weeks of my recov-ery were hard at times but thebiggest bit was over. The nursesthen taught me all about my anti-rejection tablets. On the fourth

week of my recovery, I was doingso well the doctors said theywere really impressed by myspeedy recovery, so they said Iwas well enough to go home.When we heard this me and myfamily were thrilled. My lungfunctions were just back to nor-mal. We then headed home forIreland. When we got home therewas a big reception for me inDurrow, Co. Laois where I live. Icouldn’t believe the turnout.

The night I went home it wasgreat to sleep in my own bedagain, no noisy concentrator inmy room anymore, no more oxy-gen tubing on the floor. It wasthe beginning of my future.

I now attend the Mater hospitalunder Dr. Egan. To this day I amforever grateful to my donor andfamily and I would also like tosay a huge thanks to CrumlinHospital and Vincent’s HospitalCF Units and the Mater Hospitaltransplant Unit, FreemanHospital Newcastle for all theirhard work, dedication and kind-ness to me.

This was the best Christmasever; now I can walk any dis-tance and socialize with myfriends. I went Christmas shop-ping to Liffey Valley shoppingcentre without being pushedaround in a wheelchair.

Now that the New Year is here, Ihave great plans in store. I amstarting tennis and have joinedthe gym. I will travel to New Yorkwhere I have always dreamed ofgoing and I am in the process ofdriving, also I will finish theECDL course from the cybercampus. Now I can fulfil all myambitions. I would like to say toanyone that is on the transplantwaiting list that your day willcome. You just have to keep pos-itive and try to get on with lifeand not put it on hold and thinkof all the things you will be ableto do.

PERSONAL PROFILE

NAME: Aoife Conroy

FROM: Laois

AGE: 20

Managing CF-Related Diabetes..at 17 weeks and

17 years..

FF: What triggered your diag-nosis?MD: In most cases the tell-talesigns of trouble with insulinand blood sugar levels arethings like unexplained weightloss combined with increasedthirst and increased need towee (especially at night!).Some people experience prob-lems with their sight as well.RT: I was an inpatient at thetime, and had some of thesame symptoms. They’re signsthat there’s a high level of

sugar in the blood, which yourbody’s insulin isn’t processing.

FF: Are you put on insulinstraight away? MD: I think the first course ofaction recommended to mostpeople with symptoms likehigh blood sugars is to try a‘low sugar’ diet to see if theirblood sugar levels stabilise.That can be difficult to keepstrictly to but it is the leastinvasive way of controllingyour sugars. A ‘low sugar’ dietis not ideal for most peoplebecause it can stop you gain-ing weight. The diabetic nurse gives you aglucometer to check yourblood sugar levels at home.You get used to checking yourblood sugar levels before andafter food – usually you recordthe results in a notebook. RT: A glucometer is a smalldevice that tests a small pin-prick of blood from your finger-tip.

Diabetic Kit!

MD: After a few weeks ofchecking and recording you goback to the diabetic nurse wholooks at your results. Then you might be prescribedinsulin, which is injected intothe skin to get into your bloodquickly.

FF: Does everyone take thesame insulin?RT: There are different types ofinsulin medications: slowreleasing, fast acting and amixed type. Doctors prescribeeither one or a combinationthat is specific for eachpatient’s needs. Your dosageand type can change over time.

FF: Does that mean you haveto attend two Clinic appoint-ments?MD: Yeah, sometimes they canco-ordinate it so you can killtwo birds with the one stone!The way insulin works in CFcan be complicated so your CFTeam and the Diabetic team areinvolved in treating it.

FF: Is it hard to inject yourself?Does it get sore?MD: Finding a site can be diffi-cult if you’re a bit skinny - it’suseful to vary the site to reducesoreness. Popular sitesinclude the tummy, arm andupper leg/thigh area. With themore practice you get, youdon’t really feel it becausesuch a tiny needle is used. RT: Each tiny needle slots intoa pen. The needle you use isdisposable after each injectionand each pen is usually usedfor about 3 weeks before youreplace it. As the pens are real-ly discrete most people canpop to the loo in work andinject their insulin in privacy.

FF: I’ve heard of people havinga ‘low’ – what’s that about? Hasit ever happened to you inwork?MD: I suppose ‘low’s’ or lowblood sugar episodes are dif-

QUESTIONS & ANSWERS

Q & A

12

Diabetes usually makes peoplethink of needles and injectinginsulin - it can be a bit worry-ing, especially when we thinkwe have enough pills and nebsto keep us busy. CF RelatedDiabetes is not uncommon, infact some studies have esti-mated that “approximately15% of PWCF have CFRD andmany more will have someform of Glucose Intolerance”(Olive Tully, Senior Dietician,St Vincen’s Hospital, Dublin;FF 2000).

There is very definitely lifeafter diagnosis of CFRD, andfor this issue FF took theopportunity of finding out whatlife is like for two PWCF - onediagnosed approximately 17weeks ago (RT) and the other(MD) 17 years ago - back in1987 (wow) !!!

QUESTIONS & ANSWERS

13

ferent for everyone. The warn-ing signs are different foreveryone - usually people startto recognise their own prettyquickly. One time I foundmyself feeling a bit confusedand knew it was a ‘low’.RT: You can be feeling dizzy, oryour speech may start slurring.I realised I had been having‘low blood sugar’ spells sincemy Leaving Cert and I used tojust eat something to pick meup a bit. Little did I know!

FF: What do you do then?MD: Special Dextrose sweetsor Lucozade usually bringsyou around quickly. It’s usefulto keep them in your drawer/locker in work. Some work-places will have a first aid kitthat you can put them in forsafekeeping.

FF: What kinds of food are youcareful about?RT: As a rule all sugary drinksare off limits. I also had to giveup sugary sweets like jellies- ittook a while to get used to! MD: Well I find that someChinese take-a-ways can beextremely high in carbohy-drates (complex sugars) so it’suseful to have some insulin onhand!

FF: What about diet drinks? Iremember ordering a round ofsoft drinks at a party once, notrealising that one of my friendsneeded a DIET because theywere diabetic - luckily the bar-man sorted it out….. !MD: Yeah you have to steerclear of all sugary drinks - theobvious ones like Coke andLucozade, are big no-no’sbecause of the high sugar con-tent. (They’re actually used in‘emergency’ type situationswhen someone is having anepisode of low blood sugar –known as a ‘hypo’ or hypogly-

caemia.)RT: As a coffee drinker, I useCanderel to sweeten it up, orsome people use Hermesetasor Splenda.

FF: Is it difficult to follow thediet for CF and the diet forDiabetes at the same time?MD: Well typically both the CFdiet and the CF Diabetes dietsuggest regular meals withsnacks in between, so in termsof food quantity, the recom-mendations are the same. Theaim is always making it to yourideal weight and staying there!You just have to be vigilantabout the carbohydrates thatyou eat. Obviously a balanceddiet is the ideal no matter whatmedical condition you have. RT: Talking to the SpecialistDietician is a really importantpart of making adjustments towhat you eat.

FF: What about exercise-where does it fit in? MD: Exercise is always reallyimportant for PWCF. Naturallyit burns up calories and so itcan cause rapid decrease inblood sugar – which obviouslycan result in a ‘low’. It’s fine toexercise once you take a snackbefore hand and bring some-thing sweet to give you a ‘high’if needs be! RT: Packet of Jelly Babies allround then!

FF: What about the supple-ments we take to help weightgain in CF - are they high insugar?MD: Some are ‘worse’ than oth-ers! The supplements are gen-erally high in protein and fatthat doesn’t affect blood sugarat all. Some energy drinks canhave quite a lot of sugar so youhave check out each one withyour dietician first. RT: Like for instance, I was rec-

ommended to swap Polycal forsomething with less sugar.Scandishakes are still allowed(which is good news all round!)but you might have to takemore insulin with it.

FF: Have you had any difficul-ties Travelling?MD: Nope! Like the rest of yourCF medication, it’s a good ideato bring more than enough sothat you don’t run out. Also ifyou’re on a long haul journey,make sure you have plenty ofmeds in your hand luggage - italso comes in handy shouldyour luggage get lost. RT: When you’re travelling, eat-ing times and meals can be atany time, so it’s no harm tobring some supplies to keepyour blood sugars in the nor-mal range - and it’s good to letyour travelling companionknow where to find them ifyou’re not well. Bring snackslike biscuits and crackers orcereal bars if you’re going toget hungry.

You’d also want to bring pre-scriptions if you’re going awayfor an extended period of timeand your meds might run out.Some countries like the Statescan request a Doctor’s letterwith details of your medica-tions - just to prove you’re notimporting insulin to sell on thestreets!!!

FF would like to thank the guys for alltheir useful tips! A special word ofthanks to Olive Tully Senior DieticianCF Team and Maeve Moran, SeniorDiabetic Dietician at St Vincent’sHospital for fine-tuning some of thescience bits!If you recognise some of the symp-toms of CFRD it’s important to men-tion it to your CF Team to get itchecked out thoroughly. If you’readjusting to life with CFRD, pleasetalk to your Dietician who will giveyou pointers and reminders aboutmanaging a CFRD diet.

WHAT AILS YE?

14

So you’ve finally begged, bor-rowed or saved to buy yourfirst set of wheels but nowyou have to arrange someinsurance cover to drive. Inaddition to the shockinglyhigh premiums you’ve heardof - you also need to considerthat you have CF.

Do I need to declare my med-ical condition?

“Sure, it doesn’t affect mydriving in any way - I didn’teven need to inform the locallicence authority - CF wasn’tlisted on the driving licenceapplication form!”

Well, Future Force decided tolook into this a bit further andasked some of our membersto share their experiences todate.

Some members indeed havenot declared that they haveCF and they feel their insur-ance company doesn’t needto know. They feel it is irrele-vant information!

Some members who diddeclare their CF found itslightly awkward whenrenewing their insurance oreven trying to shop around

for better deals. At everyrenewal they have to com-plete medical forms or getdoctor’s letters to declarethey are fit to drive!

One “angry reader fromClontaarrf” was very frustrat-ed at renewal time as you nor-mally only get 3-4 weeksrenewal notice. You can callaround for better quotes but ifyou declare you have a med-ical condition then compa-nies wont quote you instantly.You need to supply a doctor’sletter first. This is very annoy-ing – it means you can’t read-ily compare prices.

Future Force contacted theIrish Insurance Federation(IIF) for proper advice. The IIFwere most concerned thatany of our readers wererefused a quote!

The IIF indicated that legallyeveryone is entitled to aquote. If you have beenunable to get a quote pleaselet the IIF know about it!(email: IIS@IIF.ie)

The IIF explained that youshould declare that you haveCF - this is important and rel-evant information to the

insurance company - even ifyou don’t think your condi-tion affects your ability todrive!

Many insurance companiessend out their own proposalforms that you must com-plete. All proposal forms sup-ply a list of medical condi-tions and ask if you have anyof these conditions. As CF isnot usually listed in this sec-tion Future Force can seewhy some of our readersdon’t see the need to declareCF.

However all insurance pro-posal forms have a sectionasking ‘Other relevant infor-mation?’ or maybe ‘Anyother medical condition?’.The IIF explained that hereyou must declare that youhave CF as a principal of‘good faith’.

If you don’t declare CF thenthis could be regarded as‘non-disclosure’ of relevantinformation and this couldlead to problems and compli-cations.

Future Force would like to thankthe Irish Insurance Federation fortheir advice & guidance.

WHAT AILS YE?Is there something that’s been bugging you for a while? Got some-thing to get off your chest? Future Force invites you to have a goodgripe and asks “What Ails Ye”? In this issue we are looking at MotorInsurance - what is the best practice to follow when looking for motorinsurance and some difficulties some of our readers have had tryingto get insurance cover.

Motor Insurance!By Rory Tallon

If you have any insurance relat-ed experiences or advice youwish to share with Future Forceplease contact us at futureforcemag@hotmail.com

or post your views on the CFAIwebsite chat room ‘CommunityForum’– www.cfireland.ie

or send us your views in writingto Future Force MagazineCF House24 Lwr Rathmines Rd, Dublin 6

MAKE A WISH

15

MMAAKKEE AA WWIISSHH!!By Cormac Murray

When the Make-A-Wish Foundation asked mewhat I would like to do I said my wish would beto meet the Liverpool football team. On the dayof the trip my mum, dad and I were picked up bya limo and brought to the airport. The next daywe were brought by another limo to Melwood,Liverpool’s training ground. When we got there,Gerard Houllier brought us up to the player’sroom and I got to meet all the team, includingMichael Owen who is my favourite player. It wasgreat meeting Michael, he was so nice and I hada great time meeting all the other players aswell.They all signed my Liverpool jersey and myautograph book which was great.

I would like to thank Vin O’Brien who was mytour guide for the day. He took us on a tour ofAnfield and we got to see all the stuff that other

people don’t get to see, such as the corporateboxes, a special school for kids from Liverpooland we even got to stand on the famous pitch!The we went to the Liverpool club shop where Igot some Liverpool gear (Michael Owen’s jerseyof course!). The next day we were going to thematch and we got a police escort fromMerseyside police. The took us to the match andbrought us back to the hotel. The match wasbrilliant, the crowd were great and they beatAston Villa 1-0.

I would like to say a special thanks to Make-A-Wish and the Liverpool football team for makingmy wish come true. It was the best time of mylife.

Editors Note: the website for the Make-A-WishFoundation is www.wish.org

Looking for a new venue forcoffee?

Why not visit Boland’s Cottage Café inMarlay Park, off Grange Road,Rathfarnham? Enjoy a brisk walk in the lovely surrounds ofMarlay Park, and finish off with tea or coffee and deliciousFrench pastries, tarts or scones!

Why not treat yourself to a Boland’s special hot chocolate?Open sandwiches freshly made to order.

Boland’s Cottage Café, at the entrance to MarlayRegency Walled Gardens – A plant and gardenenthusiasts heaven!

All at the foot of the Dublin mountains.

See you soon!

P.S. Free coffee if you mention this ad!

Update on Adult Group Issues

On your first visit to this website, you can either register and become a member or you can take the quick tour fora sneak preview. The site does exactly what it says- it's a site where you can create a personal record of your healthusing a 'Diary', graphs, and charts. There's some interesting trivia on each page and a Q&A sectionwhere a CF Team responds to queries sent in. There's a lot more to the site if you take the time tohave a good scout around!

This website gets top marks for design and graphics! Unfortunately, it hasn't been updated in a while. Keep an eyeon it though, because it tells us there are plans to fill up the Game Gallery, Info Centre, Newsstand, and even a CFStore. If all else fails there are some good links to check out under the Resource section - give it a try!

WEB WATCHwww.mycysticfibrosis.com

www.cfusa.org

WEB WATCH

16

Readers Comment

RE: Norma (Full name Norma Kennedy Plourde) web address. “I had some difficulty with the published address{Future Fore Autumn 03) Instead use the Yahoo search (or any search engine) and type in the followingpersonal.nbnet.nb.ca/normap/cf.htm I suggest anyone wishing to access the site on a regular basis could add thesite to their favourites folder. Saves having to type the address every time”.

Thanks for the suggestion! If you’ve got a favourite CF site we haven’t covered yet send it to us at the usualaddress with a couple of lines about why you like it and what useful information it has!

Although it may seem like it’s been a quietyear for the CF Adult Group with none of ourusual meetings taking place, lots has beenhappening all the same. Our NEC delegateshave been bringing issues to the NationalBoard for discussion and debate with signifi-cant success. The topic foremost in a lot ofpeoples mind is of course the cross infectionissue. Our Chairperson, Patricia Duffy, hasbeen sitting on the cross-infection sub-com-mittee and helping to formulate new cross-infection control guidelines. At the time ofgoing to print new guidelines have beenfinalised. Expect a full report in our nextissue!

The Adult Group also secured funding forFuture Force - an important source of infor-mation and entertainment to all our readers.Our two delegates highlighted the difficultiesinvolved in getting sponsorship to theNational Board and they readily agreed tocompletely fund FF (although all donationstowards printing costs will still be gratefullyaccepted!).

For the second year running our AG delegatesproposed that the Annual Conference be anon-smoking event. This is in line with currentEuropean practice and we are delighted toannounce that this year our proposal waspassed by a majority vote. This is just onestep further in our social inclusion policywhich should enable people to take part innormal social occasions without undue suf-fering.

At the present time we are busy contactingmany of the local authorities around Ireland toget information on the location of disabledparking spaces. As we collect this informationit will be made available on the CFAI website.See the article on parking permits in thisissue.

If you have any issues you would like us tofollow up or help you with, write to theSecretary of the CF Adult Group, Jean Byrne,at the CF House address or email FutureForce.

HYGIENE GUIDELINES

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HYGIENE TIPS!TIPS!

There are many simple ways wecan increase our awareness ofhygiene in our daily lives.

Did you know that studies haveshown that by simply washing ourhands for the time it takes to saytwo verses of “Mary had a littlelamb” you can reduce cross infec-tion by hand contact by up to 75%?Its true!

And if you can’t remember allthose childhood rhymes we’vemade it easy with your very owncut-out-and-keep bookmark!

This is good practice for everybody- pwcf and parents!

Wash yourhands!hands!

18

Across1 Money earned, salary (6)4 Limb (3)7 Exact due penalty or reparation for (6)8 Fictitious prose narrative or tale (5)9 Top of vehicle or building (4)10 Name for a girl (3)12 Expression of boredom or tiredness (4)14 Place where you can visit Mickey and allhis friends (10)

Down1 Who or what a person is (8) 2 Knowledgeable, quick or shrewd (6)3 _____ ___ wheels, service providing foodfor old people (5,2)5 Item that can be used when cooking eggs(3,5)6 Slope or tilt (4)11 Container used for carrying liquids (4)13 Past tense of is (3)

QQUUIICCKKCCRROOSSSSWWOORRDD

Colomycin (Colisin) is now available in 2mu vials

Editors note: This is not a productendorsement. It is an informationupdate for our members.