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					             journey                  Cystic Fibrosis Victoria Adult News, Edition 12, 2006




Live on, live strong                                                                     in this issue …
by Wood Fitzpatrick                                                                      FEATURES
                                                                                         All about Pneumothorax
    Living with CF is an all-                                                            Hypertonic Saline Solution - Mark Elkins
consuming thing. In fact it is so
involving that when I dream of                                                           NEWS
being in someone else’s shoes,                                                           Introducing the new Support Team
I still have CF. It’s a kind of
                                                                                         New Respite Program launched
constant ‘companion’, driving
me to live a life that is full and                                                       Managing health outside CF Centres
exciting.                                                                                Hospital visits during the Games
    My name is Wood Fitzpatrick,                                                         Alfred Parking concessions
formerly Edward but evolution
has reared its beautiful head. I                                                         PROFILE
am one of two children and CF                                                            Front: Wood Fitzpatrick (CF)
has never been in my family
tree. Born in Central North
Queensland I had the unfortunate                                                       surfed most of the breaks.
luck of starting my life in a small                                                        I also love snow skiing and I’m
coal mining town where I did not                                                       currently planning my first overseas
endure life in the town or school                                                      trip to celebrate my 30th birthday
very well. I was able to leave                                                         with a ski holiday in New Zealand. A
(thankfully) at the ripe age of 14                                                     few other favourite things I like is live
years. That is really when my life                                                     music and theatre.
began.                                      —and decided to settle here. I have been       Having CF actually drives me
    I always had the desire to see as       here seven and a half years and can’t      to lead a fuller life. I am fortunate
much of my own country as possible          see myself ever leaving.                   enough to have good lung function
before travelling abroad. I set out on a        I have many passions in life and       and my active lifestyle keeps me fit and
journey to backpack aound Australia         being a fast-paced and loud guy, my        moving. CF is a lot of hard work, but
from top to bottom. Not really having       passions generally revolve around          it has also made me grow up faster to
any particular career in mind I fell        extreme sports. I own a dirt motorcycle    deal with the massive responsibility of
into hospitality. It suited my social       on which I’ve scaled hundreds of           looking after my own health. It makes
personality (I’m a Leo) and I really        mountains and soared over thousand of      me live in the ‘here and now’ instead
loved the lifestyle that came with it.      jumps, big and small. There is no cooler   of in the past or future, and that’s an
    After eight years of travelling down    thing than popping a wheelie!              attitude towards life that plenty of
the east coast of Australia, I discovered       I still surf regularly and miss the    people aren’t lucky enough to have.
the best place on earth—Melbourne           east coast sea air where I lived and


Your support team is here to help
    In December last year Wendy                 CFV provides many services to
Collins, Community Services Manager,        adults with CF including regular
and Sarah Gliddon, Community Support        newsletters, free hospital TV service,
Worker joined CFV just in time to           adult respite program, CF scholarship
handle the Christmas hamper rush.           program, laptop loan service and
    Wendy has recently moved from           discounted gym memberships.
NZ and brings a wealth of social work           Next time you are being admitted to
experience to her role in heading the       The Alfred or Monash Medical Centre
CFV support team. Sarah’s experience        request a CFV Notification Form which
in disability services and her post-        will notify Sarah and Wendy of your
graduate qualifications in genetic          admission and let them know how they
counseling also make her a valuable         can help you.
addition to the support team.                                                          CFV support team Sarah Gliddon and Wendy Collins.

CFV - Enhancing the lives and meeting the changing needs of Victoria’s Cystic Fibrosis Community
What is Pneumothorax?
A
            pneumothorax occurs when        injury such as a knife wound or a car       may require an immediate chest-tube
            air gets into the space         accident can result in a pneumothorax.      insertion to allow the air to be released
            between the lung and the            Medical procedures such as              and the lung to re-expand.
membrane that covers it when small          transbronchial biopsy, thoracentesis,           The only known way of preventing
breaks occur in the lung wall.              and chest tube insertion can all increase   all pneumothorax is to reduce the risk
    Pneumothorax is the rupture of the      the risk of a pneumothorax.                 by not smoking.
air-filled sacs (blebs) on the lung which       Approximately three out of 1,000            Recurrent cases of pneumothoraces
results in air escaping from the lung       individuals are affected by traumatic       may require surgery to eliminate the
and entering the chest cavity, causing      pneumothorax each year.                     chance of having future episodes.
the lung to collapse. Depending on              Both tension and traumatic              Recurrent cases of spontaneous
the severity of the incident, various       pneumothoraces can be a life-               pneumothorax may become more
symptoms will be experienced within         threatening emergency.                      serious and an x-ray is the only reliable
minutes of the initial collapse.                                                        method in determining the severity of
                                                                                        each pneumothorax.
                                            Causes
Symptoms
                                                The reason why spontaneous              Prognosis
    Symptoms include sudden chest           pneumothorax occurs is unclear,
pain, shortness of breath, chest            although it has been attributed to tall,        Unfortunately a pneumothorax
tightness, easy fatigue, rapid heart        thin men (between 20 and 40 years           has a very high rate of recurrence.
rate, bluish color of the skin caused by    of age), smokers, and in some cases,        As many as 50% of patients with
lack of oxygen, pain in the arm and a       women during their menstrual cycles.        a pneumothorax may experience
stabbing sensation in the back.                 Causes of a tension or traumatic        recurrence, (with tension pneumothorax
    Pneumothorax is detected using a        pneumothorax differ depending on            it depends on the treatment.)
stethoscope; a doctor may be able to        each situation. A penetrating trauma to         Luckily there are no long-term
determine decreased breathing sounds        the chest, lung infection, or a recurrent   complications once successful therapy
and a possible collapse but tests to        prior pneumothorax may all lead to a        has been completed.
diagnose the type of pneumothorax are       pneumothorax.
usually undertaken with a chest x-ray
and a test on arterial blood gases.                                                     What you can do
                                            Treatment and prevention
                                                                                           Spontaneous pneumothorax – call
Types of Pneumothorax                           The goal in the treatment of            your local doctor or hospital.
                                            pneumothorax is to remove the air from      Tension or Traumatic pneumothorax
    Pneumothorax is classified into         the pleural space so that the lung can      – Dial 000 Emergency and request an
three main types: spontaneous, tension      re-expand. For small pneumothoraces,        ambulance immediately.
and traumatic pneumothorax.                 the body may absorb the excess air
    Spontaneous pneumothorax has            on its own. In more serious cases such      Reference: http://www.pneumothorax.org/
two classifications of its own - Primary    as a tension pneumothorax, patients         pneumo.nsf/index.html
and Secondary. As with all other types
of pneumothorax, primary spontaneous
pneumothorax occurs without any prior
lung disorders or diseases. Secondary
pneumothorax can occur as a                   Some facts about Pneumothorax and CF:
complication of underlying lung disease
such as cystic fibrosis.                      •   Spontaneous pneumothorax is a common complication in CF
    Tension pneumothorax is a severe
pneumothorax and the lung collapse                patients, more likely to occur later in the course of the disease
is usually more than 50%. The cause           •   The first case of pneumothorax in CF was reported in 1966
of this type of pneumothorax can
be a traumatic event, or a severe             •   Spontaneous pneumothorax occurs more frequently in older
spontaneous pneumothorax. It differs
from spontaneous pneumothrax in
                                                  patients
that the collapse is much more severe         •   Incidence of spontaneous pneumothorax in CF patients is 6.4%
and can cause many serious medical
problems.                                     •   The youngest age of initial pneumothorax was 4 years old, however
    As the air escapes from the lung              the mean age of occurance is typically in the mid-teens
it enters the pleural space, increasing
pressure in the area. This can cause the      •   Both men and women are equally at risk of pneumothorax
heart, trachea, and great vessels to be       •   Pneumothoraces can occur in either lung
pushed towards the unaffected side of
the chest.                                    •   Smoking is a known risk factor for primary spontaneous
    Traumatic pneumothorax occurs                 pneumothorax
when a physical injury results in a
puncture wound to the lung, causing
the lung to collapse. Any physical
Aussie surfers give
researchers a clue to
improving CF treatment                                                                               by Mark Elkins


   A
           ustralian researchers observed   signs of improvement or any possible              Participants’ lungs were also
           Aussie surfers with CF had       adverse effects.                              assessed very closely for signs of more
           fewer lung exacerbations                                                       inflammation, but no evidence was
than those not exposed regularly to salt                                                  found. The use of Hypertonic Saline did
water. This inspired US and Australian      What did the trial show?                      not affect which bacteria were found in
researchers to investigate further. Two         The main outcome of the trial was a       the lungs, nor their concentration in the
studies on the findings of the effect       modest rise in lung function after four       mucus.
of Hypertonic Saline (salt water) on        weeks. This continued until the last trial
patients with CF were published early
this year in the New England Journal of
                                            test at 48 weeks. Subjects had far fewer      Is Hypertonic Saline
                                            flare-ups and needed significantly fewer
Medicine. The findings established that
Hypertonic Saline inhalation is a valid
                                            “extra” antibiotics to manage their           suitable for any other
treatment which can reduce infection
                                            flare-ups.
                                                Among other benefits reported were
                                                                                          lung diseases?
and improve the overall quality of life     improved attendance at school, work or
for people with CF.                                                                           There is a lung disease called
                                            other usual activities and feeling that       bronchiectasis, which also causes
                                            overall health and quality of life was        chronic infection in the lung with acute
About Hypertonic Saline                     better.                                       flare-ups. One short-term trial has
                                                                                          shown that Hypertonic Saline can be
    Hypertonic Saline is simply a
strong, sterile, salt-water solution of     Were there any adverse                        helpful in peope with bronchiectaasis,
                                                                                          but no long-term trial has been
about 7% salt (about twice as salty
as seawater); sometimes weaker or
                                            effects?                                      conducted.
                                                                                              There is no evidence that Hypertonic
stronger concentrations are used. Sterile        Hypertonic Saline can cause the          Saline is beneficial for other lung
Hypertonic Saline can be turned into        airways to narrow – just like they            diseases. Most other lung diseases don’t
a mist by a simple nebuliser for lung       can do in asthma. In the National             cause infections and many cause airway
inhalation.                                 Hypertonic Saline Trial, all subjects         narrowing (such as asthma, chronic
                                            took a drug to open their airways,            obstructive pulmonary disease (COPD),
                                            called a bronchodilator just before
How does it help in CF?                     each Hypertonic Saline dose. This was
                                                                                          and emphysema). In these conditions
                                                                                          Hypertonic Saline would not be helpful
    When Hypertonic Saline is inhaled       very effective in limiting the amount         and could very well be detrimental.
into the lungs, the body tries to dilute    of airway narrowing. For this reason,
                                            it is strongly recommended that people
the strong salt concentration. The cells
lining the airways are triggered to         with CF take a bronchodilator before          I have CF. How can I get
release water. This restores the layer of   each dose of Hypertonic Saline, and are
                                            supervised when they inhale their first
                                                                                          some Hypertonic Saline?
moisture lining the airways, thinning
the mucus. This helps the mucus to be       dose of Hypertonic Saline.                       Although there is no commercial
more easily cleared, the same way it             Lung function should be measured         manufacturer of Hypertonic Saline most
does in healthy lungs. You could think      before and after the first dose, to           hospitals with large CF Clinics were
of it as the lungs “flushing out” the       check that the bronchodilator is strong       involved in the National Hypertonic
stagnant, infected mucus.                   enough to prevent significant airway          Saline Trial, and therefore have a
    Studies undertaken during the mid       narrowing.                                    supply already available.
1990s showed that inhaling nebulised             More coughing during and                    Do not try to mix up your own
Hypertonic Saline temporarily increases     immediately after inhalations is normal       solution of salt and water. You will
the speed at which mucus is cleared         but this should settle after the first few    not be able to make a sterile solution
from the lungs. Subsequent short-term       doses, or at most, after a few weeks. A       and you may not prepare the correct
trials showed that inhaling nebulised       lower concentration of saline may be          concentration.
Hypertonic Saline on a regular basis        more tolerable if coughing persists.             For more information or to discuss
(usually twice per day) improves lung            Some people in the trial found the       your interest in trying Hypertonic
function in people with CF.                 taste of the saline difficult to tolerate.    Saline contact your CF treating Doctor
    The recent trial tested 164 stable      However, the saline had a bitter              who will organise a ‘tolerance test’ for
subjects with CF aged over six years        taste-masking agent which was only            you to monitor any possible hyper-
twice daily for 48 weeks who inhaled        needed for the trial. The hypertonic          reactivity to the Hypertonic Saline.
Hypertonic Saline. They continued           saline you would receive from your CF         The tolerance test will rule out any
all their other standard therapies and      centre would taste much better. Not           sensitivity to Hypertonic Saline before
received whatever additional treatment      surprisingly, some people still find the      you can be administered a prescription
they normally would receive.                taste quite salty but not that difficult to   which will be filled by your treating
    Patients were checked regularly for     tolerate.                                     hospital pharmacy.
                                                                                                           Other
                                                                                                         Travel and
                                                                                                                     info
                                                                                                         accommmodation during
                                                                                                         Commonwealth Games
                                                                                                                                           !
                                                                                                         As the Commonwealth Games rapidly
                                                                                                         approach we have been thinking about our
                                                                                                         members in country Victoria and how we can
                                                                                                         help you get around any inconveniences of
                                                                                                         any pending travel to clinic visits.
 Pictured location: The Church Accommodation, Dayelsford.



 Adult respite
                                                                                                         As you may be aware a number of hotels,
                                                                                                         motels, serviced apartments and hostels in
                                                                                                         Melbourne are fully booked over this time.
                                                                                                         Those that aren’t are charging premium


 program launched
                                                                                                         prices for accommodation. CFV will make
                                                                                                         every attempt to book accommodation for
                                                                                                         clinic visits and hospitalisations over this
                                                                                                         period. Unfortunately, it may be necessary
    CFV has recently launched our new Adult Respite Program. Funded through                              to book this some distance from the hospital.
 the generous support of Trip of a Lifetime, each respite package includes one                           While it is unlikely, it is possible that
 night’s accommodation and breakfast the following morning.                                              accommodation may not be available over
     The respite packages allow a short stay at one of a range of locations                              the period of the games. Also be aware many
 around Victoria to help reduce stress levels and take a break from your normal                          of Melbourne’s streets will be closed during
 routine. Locations include Queenscliff, Daylesford, the Grampians, Echuca, St                           this time.
 Kilda and the Dandenong Ranges.
    To be eligible, adults with CF must be members of CFV and submit an                                  Neither The Alfred nor Monash Medical
 application to Wendy Collins at CFV. Some conditions apply but you will be                              Centre have plans to change clinic
 able to access the respite program at least once a year. Exceptions may be                              arrangements.
 made depending on your individual circumstances.
    For further information or to discuss a booking please contact either                                If you are from out-of-town try to reschedule
 Wendy or Sarah on 03 9686 1811.                                                                         your appointments (if possible) to the weeks
                                                                                                         prior or after the Commonwealth Games. If
                                                                                                         you do decide that it is necessary to attend
 Consult your CF Care Centre first                                                                       your existing appointments and require
                                                                                                         assistance with accommodation please let us
                                                                                                         know as soon as possible.
     Many people with CF have incidental medical problems and may seek
 advice from medical practitioners outside of their usual CF Care Centre.
 Examples where this may happen includes abdominal pain, constipation,
 impacted wisdom teeth and dizziness in hot weather.                                                     Parking at The Alfred
     Occasionally, these problems may require investigation by doctors in other
 hospitals and result in a surgical referral. Unless doctors in other centres or                         Patients attending CF clinic at The Alfred as
 clinics are aware of patients having cystic fibrosis, decisions may be made                             either an in-patient or outpatient may need
 that would be appropriate for the general community, but could have severe                              to use the car parking facilities. To ensure
 consequences for those with CF.                                                                         you receive a discounted rate of $10 you can
     If you find yourself needing medical assistance you should ask your                                 contact CF Coordinator, Felicity Finlayson
 treating doctor to call your CF Care Centre prior to initiating investigations or                       on 9276 3443 prior to your appointment or
 therapy. Qualified and experienced CF staff can then discuss relevant medical                           speak to Tracey Schutt, the Nurse Manager
 problems that patients with CF experience with your doctor prior to treatment.                          who can complete the relevant paperwork.
     Ideally you should contact your usual CF Care Centre in the first instance                          Some people may be eligible for the Special
 before seeking help elsewhere unless in a medical emergency. For further                                Circumstances rate ($6). This is a social work
 information about the policy regarding medical management outside CF care                               mediated process and patients will need to
 centres you should contact your usual medical care team. A clear treatment                              contact Sharon Sutherland, the CF social
 plan with contact details will often prevent unexpected difficulties during                             worker, to request this rate.
 medical emergencies.



Publication disclaimer:                                                                                          Cystic Fibrosis Victoria Inc.
This newsletter is designed and produced by Cystic Fibrosis Victoria Inc. Material and opinions                  80 Dodds Street, Southbank, VIC 3006
expressed in this publication may not necessarily reflect those of Cystic Fibrosis Victoria. Edited by           Phone (03) 9686 1811 Fax (03) 9686 3437
Kerryn McIver, Communications Manager, kmciver@cfv.org.au                                                        Email admin@cfv.org.au Website www.cfv.org.au

				
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