Ask the Expert
Every newsletter we encourage you, the reader to submit questions to our expert panel of specialists. Thanks goes out to Dr. Adam Jaffe from Sydney for organising the panel, as well as the medical community that volunteers their time to answer these questions.
If you have a question that needs answering – be sure to send it to facebook@cysticfibrosisaustralia.org.au
Question
Just wanted to know if my son 5yrs with CF has a wet cough should I stop him from swimming in swimming pools??? I know swimming is fantastic for them, but I figure that because he has a wet cough he is more susceptible to picking up pseudomonas. Is my theory right? As isn’t this bug “opportunistic” and if his lungs have extra mucus due to his cough would he be more likely to pick pseudo up ?
Thanks for your time
Answer Courtesy of Dr. Adam Jaffe
Thank you for your letter. Pseudomonas Aeruginosa is a bug which is found in many places in the environment particularly where there are wet surfaces and therefore it is impossible to avoid all these areas during normal day to day activities. There are many theories as to why nearly everyone with CF gets the bug in their lungs at some stage. It is thought that the airway lining is dehydrated which leads to defence mechanisms such the naturally occurring antibiotics in the airway lining fluid (called defensins) and the small hair like cells (called cilia) not working properly. It is also thought that there are specific receptors in the airways of people with CF to which Pseudomonas attaches. If left untreated Pseudomonas can cause lung damage which is why your son’s CF team will concentrate on detecting Pseudomonas early and treating it appropriately, and initially will try to eradicate it. The good news is that there are a lot of antibiotics which can be used to treat it. These may be oral, intravenous or inhaled (nebulised). Unfortunately there is very little one can do to prevent catching Pseudomonas. It is advisable that people with CF do not mix in order to avoid cross infection. Some CF centres will segregate their clinics.
Swimming, like all exercise, is very good for people with CF. The best pools are outdoor salt water pools as the salt water can help with mucus clearance. If maintained correctly, chlorinated pools contain chemicals which prevent bacteria, such as Pseudomonas, growing in the water. However, as a general rule, it is advisable to avoid spas and jacuzzis as the aerosolised water can potentially spread Pseudomonas. Although it is sensible to avoid swimming if your child is unwell with a cold, it is unlikely that having a moist cough will increase his chances of catching Pseudomonas from a swimming pool.
Question
Hi,
i recently found out that my best friend who has CF is trialing to get onto the transplant list. I'm a bit scared and worried at the same time because she won't really talk about it. I was wondering if you could talk me through the process that she will go through to get onto the list and what happens when she does. Does it mean her lungs are really bad if she has to have the transplant now? She isn't in hospital at the moment will that last for long? Will she have to move up to Sydney until she gets the transplant? What happens if she doesn't get it in time?
I'm just a little scared, but please tell me all the details because i would really like to understand.
Thank you so much for your time
Answer Courtesy of Dr. Monique Malouf from Sydney
Thank you and hopefully I can help answer some of your concerns.
Initial assessment occurs after the respiratory physician who has been caring for your friend feels that their health is gradually worsening and the likelihood of improvement is slim. Consequently she is then referred to a lung transplant unit for review. This includes a under going a large number of tests to assess her condition and decide whether she is suitable for a lung transplant.
During the course of her review she will meet the transplant team –which include doctors, nurses, physiotherapists, social workers, dieticians and psychologists.
The decision to list her is based on the fact that her chance of surviving more than 2 years is less than 50% and /or her quality of life is so significantly impaired that she is unable to live the life that she cherishes ie able to go to school, walk without feeling so breathless and enjoying the type of life her family and friends enjoy.
All patients with cystic fibrosis receive 2 lungs or a double lung transplant.
The time on the active waiting list is generally around 9 months-although it is important to know it can vary widely ie from as little as a few days/weeks to 1-2 years waiting time.
During her waiting time it will be important for your friend to maintain good nutrition, regular physiotherapy/postural drainage and maintain as active a life as possible –ie a regular exercise regime to achieve the best muscle strength she can-although this can be very difficult to achieve as her respiratory disease worsens.
Sometimes she will need to be admitted to hospital for the treatment of infections due to her lung disease and may require other supportive measures to help her survive to the transplant.
Will she need to move to Sydney-this really depends on where she lives. If she is close to major town/city then generally no, as she can either be flown down-(as we do have aircraft available specifically for this purpose) or if there is enough time and she lives les than 3-4 hours away it may also be possible to drive to St Vincents
It is important to try and remain positive and optimistic as everyone involved has your friends best interests at heart and will do all they can to ensure that she is well taken care while she waits to achieve a new and healthy life.
