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Adults

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

On this page you will find a range resources about living with CF, as well as stories and advice from other adults. The following film, from our CFTalk series, highlights just some of the amazing achievements members of our community have accomplished while living with CF.

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

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

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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. Hard copies are available on request. Contact healthpromotions@cfwa.org.au.

To read more articles and member stories on exercise and fitness, click here.

Exercise Support

  • Personal Training (PT) Program: This program helps with goal setting and exercise motivation. This service is available in the southern suburbs and can be accessed by referral from your CF team or by contacting us directly. Contact our physio via email for more information.
  • Adult Activity Subsidy: This is available to adults with CF to assist in covering the fees of gym memberships/personal trainers. Go to Subsidies and Equipment for more information.

Useful External Resources:

  • Beam: An online exercise platform with a huge catalogue of CF-oriented exercise videos. They offer on demand, live classes and group classes, all from the comfort of your own home. They offer people with CF a free 3 month trial. Contact CFWA via email for the code.
  • CFYogi: A free virtual yoga studio for the CF community.

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. Hard copies of these CFFood booklets are available on request. Contact healthpromotions@cfwa.org.au.

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:

To read more articles and member stories on nutrition, click here.

Emotional Wellbeing

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 diagnoses, 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.

Some ways to look after your mental health include:

  • Have a strong support system and ask for help when you need it
  • Keep on top of treatments and medications
  • Exercise regularly
  • Practice mindfulness
  • Practice positive thinking and gratitude
  • Eat well
  • Get plenty of sleep

CFWA offer a range of services to make your life easier, including home care workers to assist with physio and exercise routines, social work support, counselling, financial subsidies, pre and post-transplant support, new parent support and more. A full list of support services for adults can be seen here.

Building a community of support networks around you, such as family, friends and community groups, is so important to ensure you have both physical and emotional supports to navigate the ups and down of life together.

Counselling and Mental Health Gap Funding

If you are struggling, our social worker is available to provide counselling and general support. She can meet you somewhere or just chat on the phone. Contact Kathryn via email kathryn.pekin@cfwa.org.au or phone 08 6457 7333.

If you wish to access more formal support, a mental health care plan can be accessed through your GP which will entitle you to access up to 20 Medicare subsidised sessions with a mental health professional each calendar year.  We offer a Mental Health Gap subsidy to assist with any payment not covered by Medicare. For more information, click on the Mental Health Care Plan & Rebates factsheet below.

To read more articles and member stories on mental health and wellbeing, click here.

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Medications & Procedures

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:

There may also be times where you will need to undergo certain procedures. We have the following factsheets available on some common procedures:

Comorbidities & Complications

Most adults with CF will experience a range of CF-related comorbidities and complications. Here is some information on some of the most common ones:

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Infection Prevention & 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. Good hand hygiene, avoiding people who are unwell and others with CF can help minimise the change of picking up germs.

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

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

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Hospital Support

CFWA can offer the following hospital support services:

Hospital Visits & Food Bag

CFWA can provide inpatient visits during an admission to offer support and discuss services. Contact Kathryn on kathryn.pekin@cfwa.org.au to request a visit.

We can also provide food bags during admissions. To request a bag, click here and select the food items you wish.

Hospital Travel & Parking Subsidy

We can offer financial assistance for regional members to help cover the costs associated with travel and parking for hospital and clinic appointments. Click here for more information and to apply.

Fertility & Parenting with CF

Fertility

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. CFWA can also link you up with other adults who have been through the process.

The following fact sheets provide more information about female and male fertility and CF.

Starting a Family if you Have CF (CF UK Trust)

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New Parent Program

We offer structured in-home support for adults with CF who are expecting a child or already have children. These services may include:

  • Cleaning
  • Respite
  • Parents with CF webinars.

To read more articles and member stories on fertility and parenthood, click here.

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.

CFWA have a CF in the Workplace brochure which may be helpful for providing employers with basic CF information.

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.

To read more articles and member stories on study and work with CF, click here.

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Travel

Travel takes planning, however for those with CF, it can involve extra organisation to ensure the trip goes smoothly. Hear from some CF adults about how they plan for travel and how having CF doesn’t stop them.

Have a read of our factsheet for more information on reciprocal health care agreements, travel insurance, health preparation, medications, flights, eating, drinking and cross-infection and links to useful resources.

To read more articles and member stories on travel, click here.

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