Providing education and information on cystic fibrosis life.
No Images? Click here
Welcome to our
CF Adult and Family Newsletter...
Every day a person with CF is given a meticulous treatment regime, but what is it all for? The end point is to keep as healthy as possible, but the daily grind has a primary focus, to protect the lungs from some nasty little suckers, referred to as CF Bugs. We commonly hear their names (and you can win awards if you can pronounce them in full) pseudo, steno, staph, for example. But what are they? This newsletter focuses on just that.
But before we begin it is really important to remember that every persons journey with CF is different. The information provided below is broad and may not relate to your specific situation, it is important to bring up any questions you have with your CF Team.
Most Common CF Bugs
**Click on the name to open a fact sheet with more information.
The bacteria that are most commonly identified as colonizing the lungs of people with CF include Pseudomonas aeruginosa, Burkholderia cepacia, Staphylococcus aureus and Hemophilus influenzae.
Although the most common pathogen in the lungs of patients with CF is Pseudomonas aeruginosa, in the early stages of life, Staphylococcus aureus and Hemophilus influenzae are the most prevalent bacteria. Figure 1 shows a schematic of the prevalence of bacterial species in cystic fibrosis patients at different ages.
Prevalence of major bacterial respiratory infections in different age groups in CF subjects. The traces represent the species as labelled. Reproduced from Harrison (2007).
Below are the most common CF bugs. Click the "nickname" to open a fact sheet with more information. You may also be interested in checking out this Fact Sheet from CF Ireland which also covers E.Coli, Klebsiella Pneumoniae and Serratia Marcescens.
When you are notified about a positive sputum result there are a few questions that you can ask to help identify the path forward. Such as; is this the first time it has been cultured, does one culture represent an immediate change in treatment (as it doesn't always), does further testing need to be done, what are the recommended treatments.
Remember, not everyone's CF journey is the same and CF bugs can impact people differently, or even be inactive but present. Arm yourself with information and discuss your concerns with your CF team.
Pseudo
Pseudomonas Aeruginosa
Haemophilus
Haemophilus Influenzae
Cepacia
Burkholderia Cepacia
Good Hygiene Practices
People with cystic fibrosis are more susceptible than others to acquire organisms from respiratory secretions.
Below are some ideas to reduce the risk of transmitting them to people with CF of all ages.
The guiding principle is to avoid transfer of oral secretions.
Always cover your mouth and nose when you cough or sneeze, preferably using a tissue whenever possible.
Wash and dry fresh fruit and vegetables before eating.
Wash your hands frequently, particularly if you cough a lot. (Don't forget the tips of your fingers and the spaces between each finger).
When using the toilet/bathroom facilities wash your hands with soap for 10-15 seconds and dry them thoroughly.
Do not leave sputum pots uncovered.
Throw tissues away immediately after you use them, into a rubbish bag or bin with a lid.
Avoid spa pools.
Cleaning your nebuliser
If you use a nebuliser, it’s important to know how to clean it properly every day, and how to maintain it. That way you’ll make sure it functions properly, as well as looking after your own health.
There are a wide range of nebulisers available, so talk with your CF team to discuss the right one for you. Check the manual for any cleaning instructions specific to that brand.
There are just three main things to remember:
- clean your nebuliser after every use
- sterilise it every week
- and check the bowls and parts every six months.
Studies have shown that nebulisers that are not cleaned can grow bacteria which can lead to infections. Cleaning also ensures optimal function.
General Business
CF drugs Kalydeco (for 2-5 year olds) and Orkambi (for 12+ years) are both on the PBAC Agenda in November 2016.
Kalydeco for 2-5yrs
The Therapeutic Goods Administration (TGA) has approved the expanded use of KALYDECO for children with cystic fibrosis (CF) ages 2 to 5 who have a G551D or other gating mutations. The PBAC reimbursement process is already underway as part of the parallel regulatory and reimbursement processes.
Orkambi for Ddf508
Having Orkambi available and affordable in Australia is a big priority with the current review coming up. We encourage you to please show your support and provide a comment to the PBAC and ask your friends and family to also get involved
Click here to support access to drugs for people with cystic fibrosis.
Please feel free to forward where appropriate to your extended family and friends.
If you would like more information on any of the above, please contact Heidi Prowse or discuss with your CF Clinic Team.
Our next topic is: CF Food
e. heidi@cfact.org.au || m. 0437 485 454
Disclaimer: The information contained herein is provided in good faith. However accuracy of any statements is not guaranteed by Cystic Fibrosis ACT. We provide the information on the understanding that persons take responsibility for assessing relevance and accuracy. Individuals are encouraged to discuss their health needs with a health practitioner.
 |  |  |
PO Box 909
Civic Square ACT 2608
e. info@cfact.org.au || m. 0437 485 454