Adult Cystic Fibrosis
Changing hospitals can be a difficult and uncertain time. This package is designed to give you all the information you need to make the process as easy as possible.
The Adult Cystic Fibrosis Team is made up of nurses, doctors, physiotherapists, a dietician and social worker, in addition to specialist referral services.
The goal of the Adult Cystic Fibrosis Unit is to provide each person with cystic fibrosis with an individualised approach such that optimal health, wellbeing and lifestyle are achieved and maintained.
WELCOME to the Adult Cystic Fibrosis Unit at the Mater Hospital Brisbane
Our goal is to help you stay as well as possible so that you can get on with enjoying the important things in your life.
Changing hospitals and teams is a difficult time, and we hope to make the change as easy as possible for you. During the early period of change things can be frustrating for you as we learn how you like to do things, however we will always endeavour to individualise your management to best suit you and your life. Some of our ideas and approaches may be different from what you are used to – if our plans do not suit your life, please tell us and we will find a flexible solution.
We think the most effective way to manage you cystic fibrosis is through a partnership between you and the cystic fibrosis team. We understand that the treatments required as part of managing cystic fibrosis are intrusive and time-consuming, and we hope to individualise your treatment to suit you specifically.
Cystic Fibrosis clinics are held each Monday afternoon between 1.30 and 4.30pm.
We are very conscious of infection control at our clinics and your clinic visit will be organised according to your latest sputum results. As soon as you arrive at the clinic we will organise for you to come into one of the clinic rooms – this reduces the chances of you picking up new bugs from other patients outside in the waiting room. We will also remind you to wash your hands with antibacterial spray regularly during the appointment.
These clinics are held on the second floor of the Mater Hospital Brisbane and appointments will be mailed to you, however further appointments can be made by contacting Rebecca Keating the CF Care Coordinator via email Rebecca.firstname.lastname@example.org or text 0434 569 382.
Usually we would like to see you at least every 3 months in clinic, even if you are well, however we are able to tailor appointment visits to suit your life. Many patients will need visits more frequently than this. The clinic appointment will generally involve a lung function test, weighing, sputum sample collection and reviews as required by the various members of the team including doctor, nurse, physiotherapist, dietician and social worker.
It is important that you feel free to contact any member of the team between clinic visits if you need to.
We like to try to arrange your admission directly so that you do not need to go to the hospital Emergency Department. Admissions to hospital will usually involve direct admission to Ward 9A, however the exact ward that you go to will depend upon the 'bugs' in your sputum test. There are 6 single rooms in the ward 9A and 4 in 8A and we try to ensure you are admitted into one of these rooms. If you find yourself in a shared room, there will not be any other people with CF in the room and you will be moved to a single room as soon as possible.
There is a lot of work involved with organising and undertaking a hospital admission, both for yourself and hospital staff, so it is important to ensure that it runs as smoothly as possible. If you are sick and needing extra treatment it is important that you let us know early rather than later as treatment at this stage is likely to result in a much more rapid improvement. You should be thoughtful in your approach and expectations for admission. If you are unwell on Monday do not leave it until Friday afternoon to let the CF team know as this is a difficult time to arrange admissions etc.
You can arrange for admissions to hospital for treatment by calling 07 3163 1083 or 0434 569 382 and speaking to Rebecca the CF care coordinator or by contacting one of the medical staff directly – see numbers at end of booklet.
It is very important that you come to Ward 9A for admission at the prearranged time as the organisation of admissions involves a lot of extra work for nursing, medical and allied health staff and admissions late in the day prevent the organisation of your treatment for the first 24hrs of your stay (meals, drugs, physio treatment).
How long you spend in hospital depends upon how quickly you get back to your best – if you are able to get back to your best within a week, then we wouldn't want to keep you in hospital any longer than this. Admissions are usually for somewhere between 7 and 14 days.
Getting you back to your best involves not just antibiotics and physiotherapy. You will also need to do some hard work during the stay to get better as quickly as possible – exercise in particular is a critical part of improving your lungs and you will exercise at least once a day during the stay.
We will also work hard to make your hospital stay as pleasant as possible in a number of ways (many of which you won't even be aware of). It is important that you are respectful of this and recognise that many people in the hospital (not just us) go out of their way to help your admission as much as possible. Poor behaviour, including being absent for treatments or leaving the hospital for unacceptable reasons, will not be tolerated.
If you have work or other commitments then let us know and we will shift our arrangements to try to accommodate this.
If you require urgent medical attention (especially after-hours) please go directly to the Emergency Department and the adult Cystic Fibrosis team will be contacted.
Outpatient/ Home IV's
The Adult CF Unit has an active programme of home IV antibiotic therapy. Home IV antibiotic therapy is time-consuming and is not the best option for everyone. If you are interested in receiving home IV antibiotics please discuss this with Rebecca (CF care co-ordinator) and the medical staff.
Infection control is integral to the care we provide to you both in the outpatient department and during an inpatient hospital stay (admission). You will be booked into outpatient clinics according to your sputum 'bugs'. This means you will be booked into a clinic with others who are growing the same 'bugs' as you in their sputum. This is to minimise the chances of you picking up other bugs from other patients.
You will be allocated a room at your outpatient visit and the various members of the team will come to see you in this room. We will also ask you to wash your hands prior to and after completing your lung function. During admissions, we request that you do not enter other patient's rooms and you do not sit/lie on other beds. This is a way that 'bugs' are easily transferred to you. When you are not in your rooms, as much as possible we would advise minimising any chance of physical contact with other people with cystic fibrosis – at the minimum we would suggest keeping at least a metre distance between you at all times.
Very rarely you may have to share a bathroom with another person with CF who has the same bugs as you in their sputum (very much like at clinic). In that situation we will discuss special precautions you will need to undertake during the admission.
Gym sessions arranged by the physiotherapists will also be organised according to your sputum bugs, to maintain infection control. The physiotherapists will organise these sessions with you and you will be expected to maintain infection control practices during your hospital stay.
Any equipment that is bought into your room must stay in your room (IVACS, computer equipment, feeding pumps). This assists in stopping cross contamination through the use of equipment. On your discharge this equipment is thoroughly cleaned prior to being given to another patient.
Hand washing is your first line of defence against bacteria transfer. Ensuring that you wash your hands or use the handrub/handwash on the wall outside your room will reduce your chances of obtaining or transferring bacteria. The CF team and ward nursing staff are also expected to be vigilant about their own attention to hand washing. If you notice signs outside someone's room be aware that they are there for a reason.
Any further questions or concerns that you may have can be directed to any member of the CF team or to the medical and nursing staff on the ward if you are an inpatient. Just remember being responsible and adhering to infection control procedures will assist you in maintaining and optimising your health.
Annual Reviews ("Roadworthys")
During busy times at clinic or ward reviews, the fine details related to the management of your cystic fibrosis may occasionally be overlooked. A periodic, full, "annual review" (sort of like a car "roadworthy"!) allows us to make sure there are not little things that can be done to either improve your health or your quality of life. While these may not need to be done strictly every year for everyone, it is important that such a review is done every so often.
Unfortunately at present we are not able to undertake full annual review assessments due to staffing and resourcing limitations and instead we will organise for your annual review tests (blood tests, chest X ray, sputum cultures and some years a bone density scan) to be performed during the year as part of your clinic reviews.
"Ports" and "Buttons"
Ports and buttons are procedures that may be able to make your life more comfortable. Ports are devices that are semi-permanently placed under the skin in the upper arm or chest that allow direct access to the bloodstream without needing to have intravenous lines inserted whenever you need intravenous antibiotics. Buttons are devices placed into the stomach through the abdomen that allow direct feeding into the stomach even when you are asleep, enabling you to gain weight and keep healthy if you are having trouble with your weight or nutrition normally.
Lung transplantation is a treatment option that is considered for patients with 'severe' lung disease. It is a very large undertaking and if it is appropriate for you we will discuss it carefully with you. The Adult Cystic Fibrosis Unit at the Mater Hospital Brisbane has close links with the Prince Charles Lung Transplant Team, which is where transplant is performed. It is important to be aware that lung transplant can provide excellent quality of life for many patients, however it is not a 'cure' (average survival for patients after transplant is only approximately 7 years). Therefore, it is important that you keep yourself as well as possible rather than thinking that transplant might ultimately 'save' you.
We like to start to talk you about the possibility of lung transplant well before it is actually necessary so that you have time to think about it. Lung transplant is not necessarily for everyone and we will ensure you have lots of information (including visiting the transplant team at Prince Charles) to make this decision when the time is appropriate.
If you have reached the stage that we think you need to seriously consider lung transplant, we will tell you, openly and honestly. However, if you want to talk about this at any time, please feel free to talk to Dr Serisier. While it may not be something you need to consider at this point, discussion now may make future plans and discussions easier.
There is no cure for CF yet, however improvements in treatments over the last 30 years have substantially improved the care we can offer people with cystic fibrosis today. This has been the direct result of research activities
The Adult CF Unit is committed to research activities aimed at improving the care and quality of life for people with cystic fibrosis. Many of the people with CF we already care for have been willing participants in a number of research trials and we always invite the participation of our patients in these activities. While this research may not directly improve your health or well-being (although we have actually found that patients who are involved in research do have an improvement in their own health), we hope that it may enable improvements in care for people with CF in the future.
Participation in research is voluntary - should you decide not to be involved in an invited research project it will not affect in any way the quality of care you will receive.
Should you have any questions at all regarding your cystic fibrosis, treatment or treatment options, or any issue at all, please feel free to contact any one of us.
The Adult Cystic Fibrosis team
Our team works very hard to provide you with the highest level of care that we can, and will always make the best possible efforts to provide you with the support you need to make your journey with us as smooth and comfortable as possible. If you have any concerns or questions about you care, we encourage you to talk about them with of of the team.
CF Care Coordinator
Rebecca Keating (CF/ Respiratory Nurse Practitioner)
Office: 07 3163 1083 Mobile: 0434 569 382 email: Rebecca.Keating@mater.org.au
The care coordinator/ respiratory nurse practitioner will co-ordinate your care "package" both as an inpatient and outpatient. Coordination of the various facets of your care will ensure that your total care needs are met, in an individualised manner. Your care manager will review you at outpatients, during admissions and can be contacted if needed urgently.
Rebecca Davis (Senior Physiotherapist)
07 3163 6000 (pager 0552) email: Rebecca.Davis3@mater.org.au
Aisling Reihill (Physiotherapist)
07 3163 6000 (pager 0811) email: Aisling.Reihill@mater.org.au
The removal of sputum from the lungs ensures that the number of "bugs" within the airways is reduced, as well as removing those secretions that block the breathing tubes. This maintains your lung health by reducing inflammation (redness and swelling) in the breathing tubes and reducing the "bugs" in the lungs.
There are a number of different ways to clear the lungs, including exercise, and the physiotherapists are experts at determining the methods that work best for you, within your lifestyle. They can also be contacted at any other time that you may require their advice.
Catherine McFarlane (Senior Dietician)
07 3163 6000 (pager 0350) email: Catherine.McFarlane@mater.org.au
Good nutrition is important for everyone, especially people with CF, due to increased nutritional requirements and reduced nutrient absorption. Extra energy, fat, protein, vitamins and minerals are required to help maintain a healthy weight and to fight infection. A dietician is available to assess your nutrition needs and provide nutrition support and can be contacted at any time.
Jessica Llewelyn (Senior Social Worker)
07 3163 6000 (pager 0102) email: Jessica.Llewelyn@mater.org.au
CF places considerable emotional, financial and social burdens upon both individuals with cystic fibrosis and their families. The Adult CF Unit social worker offers counselling and support services, practical advice for liaison with housing/legal/and council services and facilitation of financial support services. The Adult CF Unit social worker will review you as needed during outpatient clinics and ward admissions, and can be contacted at any other time in the social work department.
Karen Haworth (Clinical Nurse, Qld Diabetes Centre)
07 3163 5316 (pager 4388) email: Karen.Haworth@mater.org.au
Diabetes is commonly associated with CF, and becomes more common as people with CF get older. Diabetes can have a substantial impact upon your lung health and it is important that we identify it early on and control it very effectively. The CF unit diabetes educator provides vital information and training about monitoring and control of your diabetes. The diabetes educator will review people with diabetes and can be contacted at any time.
Megan Martin (Research Co-ordinator)
Office: 07 3163 2128 Mobile: 0407 791 072 email: email@example.com
The research coordinator arranges many of the clinical research trials that we are involved in and can provide information on current and future research that we are undertaking.
Ward Nursing Staff
The nursing staff on ward 9A/9B/8A will care for you during hospital admissions, and are available for you to contact on the ward at any time. During admissions you will be allocated a team of nurses to care for you each shift. They are experienced in the care of people with cystic fibrosis and will often be your first point of call for telephone advice after-hours.
Dr Simon Bowler (Consultant Chest Physician)
Office: 07 3163 1178 Mobile: 0411 407 996
Dr Amy Reynolds (Senior Registrar)
Ward: 07 3163 7101 07 3163 8111 (pager 0106)
The Adult Cystic Fibrosis Unit doctors are responsible for directing your therapy and ensuring you are on the most appropriate medications to maintain your health and wellbeing. The doctors caring for you comprise 2 consultant chest physicians, both with considerable experience in the management of Adult Cystic Fibrosis, a senior registrar and a resident medical officer. At outpatient reviews and during admission you will be reviewed by 1 of the consultants, although you may see the senior registrar or resident first. The doctors are also able to arrange referrals to any other medical and surgical specialities as necessary, all with experience in cystic fibrosis. One of the doctors will always be available during working hours, and can always be contacted after hours if needed urgently. During working hours, the senior registrar can be contacted on the ward, and after hours 9A staff can contact one of the consultants.
Other contact numbers
Mater acknowledges consumer consultation in the development of this patient information.
Last modified 13/11/2015.