Adults

Living with cystic fibrosis (CF) can raise many challenges. We are here to help you throughout your journey and can provide services and resources to support you along the way.

See A Guide to Services for Adults with CF brochure for an overview of our services available to you.

Treatment

Airway Clearance

Airway clearance is essential to remove thick, sticky mucus from the lungs to prevent lung damage. It is important to get into a good habit with physio so that it becomes part of your daily routine, and should be combined with exercise to enhance mucus clearance. You can check out our factsheet on Airway Clearance Techniques for more information.

There are many different airway clearance techniques, and your hospital physio will develop an individualised program that is best for you. Some techniques you may use are:

We can provide you with support with airway clearance through our Homecare Worker (HCW) service. Our HCWs visit you at home to help maintain your physio and exercise routines. See Home and Hospital Care for more information.

Exercise

Exercise is extremely important for people with CF, with improvements in lung function, strength, fitness levels and overall quality of life.

Our CFFit resources can assist you to exercise safely at home or the gym. The booklets contain CF specific exercise tips and information to help you. The resources are also useful to educate your personal trainer or fitness coach about CF and exercise.

CFFit includes the following resources:

Other exercise related fact sheets:

In 2017 we piloted a Personal Training (PT) Program in the southern suburbs of Perth to assist with goal setting and exercise motivation. We have plans to expand the PT program to cover more areas in the future. See Home and Hospital Care for more information.

We also have an annual Equipment Subsidy to assist with you with purchasing exercise equipment. See Subsidies and Equipment for more information.

 

Nutrition

Diet plays a very important role in the management of your CF. In fact, nutrition is so important that a healthy body weight can be linked to better lung function. We have a range of resources available to help you manage your diet.

Our CFFood resources provide detailed information about CF and diet. You may be interested in:

Hard copies of these CFFood booklets are available on request. For more information contact our Health Promotions Officer via email (healthpromotions@cfwa.org.au) or phone 08 6457 7333.

The CFCooking program has a range of healthy recipe cooking videos, specifically for people with CF, on topics including:

For quick information, we also have a range of factsheets relating to nutrition, including:

Medications

Having CF means you are likely to be on lots of different medications. Common medications include enzymes, bronchodilators, mucolytics, antibiotics, anti-inflammatories, salt and vitamins. These medications may be given orally, intravenously, inhaled through a nebuliser or other inhalation device. For more detailed information about common medications check out our factsheets:

Infection Prevention and Control

People living with CF are at greater risk of getting lung infections than those who don’t have the condition. That’s because the thick, sticky mucus builds up in the lungs, allowing germs to thrive and multiply. Germs can spread either by direct (person-to-person) or indirect (surfaces) contact, or by air. Fortunately, there are steps you can take to avoid germs including good hand hygiene and avoiding people who are unwell.

Individuals with CF also need to avoid contact with other people with CF. This is because they are at particular risk of spreading certain germs among others with the disease. This is referred to as cross-infection.

CFWA has developed an infection control policy for our events and office visits following guidelines from SCGH.

See our Common Infections factsheet for detailed information about how germs can affect those with CF and how to minimise risk.

Pseudomonas is a key bacteria that is spread amongst individuals with CF. See our resources on Pseudomonas:

Mental Health and Wellbeing

Anxiety and Depression

People with CF are at a greater risk of experiencing mental health issues, including anxiety and depression, due to the ups and downs of living with a chronic illness. Triggers can include new issues (diabetes, continence issues etc), health changes, difficulty maintaining normal activities such as work or relationships, poor body image or lung transplantation. Anxiety and depression can affect how you manage and cope with CF, so it is important to look after your mental health and seek help when needed.

It’s common to experience anxiety related to medical treatments or procedures. Our Procedural Anxiety factsheet has some methods that have been identified to help this anxiety.

We provide the following programs to support adults with CF:

  • Counselling: Our social worker is available to provide counselling and general support to adults with CF.
  • Goal Setting: Our Community Nurse can help you set goals to keep you motivated
  • E-Mentoring: Our e-mentoring program links up adults with CF who can provide structured guidance and support. If you are interested in this program, please contact our Social Worker via email (servicesmanager@cfwa.org.au) or phone 08 6457 7333.

Body Image

It is also common to experience body image issues because of the impact CF can have on your body. Body weight, bloating, coughing, incontinence, coughing, ports, PICCs, PEGs and scarring are common causes.

You might be interested in checking out Salty Girls. Salty Girls is a collection of real life stories from young women living with CF. In the book, the ‘salty girls’ share their personal stories about living with CF and strive to embrace their bodies, scars and all, to inspire women everywhere to do the same.

It is important to know that many adults experience these feelings and that there is always someone to talk to. For more information go to our Counselling and Support page or to speak to someone, contact our Social Worker via email (servicesmanager@cfwa.org.au) or phone 08 6457 7333.

Fertility and Reproduction

Fertility and reproduction are common areas of interest amongst adults with CF, and pregnancy and parenthood have become exciting realities for many.

If you are interested in starting a family, speak to your hospital care team as they can provide lots of information and begin preparing you for this journey. It is important to start these conversations early as it can be a long process for some individuals. The following fact sheets provide more information about female and male fertility.

We have a range of stories that members have shared about their pregnancy experiences. Visit our news page for more information.

Our Social Worker is available via email (servicesmanager@cfwa.og.au) or phone 08 6457 7333 to discuss any queries you have, and can even link you up with another CF adult who has already been through the process of starting a family.

Useful External Resources:

Comorbidities

Cystic Fibrosis Related Diabetes

Some adults with CF will be diagnosed with Cystic Fibrosis Related Diabetes (CFRD) due to damage to the pancreas over time.

Continence

Many people living with CF can experience continence issues.

Bone Health

People with CF can experience thinning of the bones at an earlier age than the normal population.

Employment

Studying or finding and keeping a job that is flexible enough to fit in around CF can be challenging. You need to consider treatment time, hospitalisations, clinic appointments and fitness levels, plus how this will fit in with your job and employer.

It is important that you are aware of both your rights and responsibilities as an employee. As a general rule of thumb, you don’t need to tell your employer that you have CF, unless it is an occupational health and safety risk, and might hinder your ability to do your job. Disclosure can often make your life easier in the long run, as it can help explain absences or problems relating to your work performance. If you are denied employment due to having CF, you might have a discrimination claim.

Contact our Social Worker via email (servicesmanager@cfwa.org.au) or phone 08 6457 7333 for more information about working with CF and your employee rights.

Useful External Resources:

You may be eligible to gain early access to your Superannuation fund. Visit the Maurice Blackburn website for more information.

Financial Support

Living with CF entitles you to access various subsidies. See the Subsidies and Equipment page for more information. You can also contact our Social Worker via email (servicesmanager@cfwa.org.au) or phone 08 6457 7333 to discuss any financial issues or queries.

Carer Support

Having a loved one with CF can be challenging isolating at times. We offer respite and support events during the year that carers can attend. These events are designed to help you build support networks with other carers. See Member Events for more information.

Carers of adults with CF are entitled to access a range of support services and financial assistance.

Check out our factsheets on carers for more information:

Travelling with Cystic Fibrosis

Travel takes planning, however for those with CF, it can involve extra organisation to ensure the trip goes smoothly.

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