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Cystic Fibrosis

Information booklet

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 Cystic Fibrosis Team is made up of nurses, doctors, physiotherapists, a dietician, social worker, diabetes services, Young Adult Support Unit – YASU (mental health) in addition to specialist referral services.

The goal of the 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 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.

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 your cystic fibrosis (CF) is through a partnership between you and the cystic fibrosis team. We understand that the treatments required as part of managing CF are intrusive and time-consuming, and we hope to individualise your treatment to suit you specifically.

Outpatients

Cystic Fibrosis clinics are held each Monday afternoon between 1.30 pm and 4.30 pm, and on alternate Wednesday mornings between 8.30 am and 11 am.

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 fourth floor of the Salmon Building in the Mater Young Adult Health Centre Brisbane (MYAHCB). You will receive an SMS reminding you of your appointment one week prior as well as a letter which will be mailed out one month in advance. However, if you are unwell and need an appointment or if you need to reschedule your appointment, you can contact Rebecca Keating (CF Nurse Practitioner) via email Rebecca.Keating@mater.org.au or SMS 0434 569 382 or you can phone Cathy Churchward on 07 3163 1205.

Usually we would like to see you at least every 3 to 4 months in clinic, even if you are well. Many patients will need visits more frequently than this. The clinic appointment will generally involve a lung function test, a weight, sputum sample collection and reviews as required by the various members of the team including doctor, nurse, physiotherapist, dietitian, social worker, and the diabetes team or YASU team if needed.

If you require repeat scripts for medications that you have run out of, please contact Rebecca (CF Nurse Practitioner) via SMS 0434 569 382 or email Rebecca.Keating@mater.org.au prior to your appointment. These can be placed into pharmacy for you to collect after your appointment or the script can be given to you at clinic. This will help reduce the amount of time you have to spend at clinic.

It is important that you feel free to contact any member of the team between clinic visits if you need to.

Hospital admissions

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 MYAHCB situated on level 7 of the Salmon Building; however, the exact ward that you go to will depend upon the 'bugs' in your sputum test. There are 6 single rooms in MYAHCB and we try to ensure you are admitted into one of these rooms. If you find yourself in a three bed bay, there will not be any other people in the other bays and you will be moved to a single room as soon as possible.

If you have Burkholderia Cepacia you will be admitted to ward 8A for your admission into a single room and if you have NTM-abscessus you will be admitted to ward 9A. Both of these wards are very used to having patients with CF and both wards will have fridges for you to utilise in the rooms.

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 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 (CF Nurse Practitioner), or by contacting one of the medical staff directly—see phone numbers at the end of this booklet.

It is very important that you come to MYAHCB for admission at the prearranged time. Also, admissions very late in the day or after hours may prevent the efficient organisation of your treatment for the first 24 hours 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 Cystic Fibrosis team will be contacted.

Outpatient/Home IVs

The CF Unit has an active program 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 Nurse Practitioner) and the medical staff. We have a very capable Hospital in the Home (HITH) team who will both directly deliver the intravenous antibiotics or can support you in doing it at home. This team involves nurses and physiotherapy as well as dietitians if needed.

Infection control

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 patients’ rooms and you do not sit/lie on other beds. When you are not in your rooms, as much as possible, we would advise minimising any chance of physical contact with other people with CF.

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, AIRVO, NIV, 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.

All staff entering your room should wear a gown and gloves to protect you from others. If they are not wearing the appropriate attire please ask them to do so. 

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 that 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 CF 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.

It is important that, if we give you forms to have tests completed, you try to have these done by your next scheduled clinic appointment. By doing this we can ensure that your clinic appointment runs smoothly and that you are receiving all appropriate treatment as quickly as possible.

'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 chest and 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

Lung transplantation is a treatment option that is considered for patients with 'severe' lung disease. The Cystic Fibrosis Unit at 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'. 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 Burr or any member of the team. While it may not be something you need to consider at this point, discussion now may make future plans and discussions easier.

Research

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 CF today. This has been the direct result of research activities.

The CF Unit is committed to research activities aimed at improving the care and quality of life for people with CF. Many of the people with CF whom 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.

Other Issues

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 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 your care, we encourage you to talk about them with any 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 coordinate 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.

Physiotherapists

Danielle Shortall (Senior Physiotherapist)
Office 07 3163 6000   Pager 0552   Email Danielle.Shortall@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 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.

Dietitian/nutritionist

Stephanie Brown (Senior Dietitian)
Office 07 3163 6000   Email Stephanie.Brown@mater.org.au

Eliza Kern (Senior Dietitian)
Office 07 3163 6000   Email Eliza.Kern@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 dietitian is available to assess your nutrition needs and provide nutrition support and can be contacted at any time.

Social worker

Jessica Llewelyn (Senior Social Worker)
Office 07 3163 6000   Pager 0102   Email Jessica.Llewelyn@mater.org.au

Cystic Fibrosis places considerable emotional, financial and social burdens upon both individuals with CF and their families. The 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 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.

Diabetes educator

Karen Haworth (Clinical Nurse, Qld Diabetes Centre)
Office 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.

Research coordinator

Megan Martin (Research Manager)
Office 07 3163 2128   Mobile 0407 791 072   Email Megan.Martin@mater.org.au

Kate Hindmarsh (Research Coordinator)
Office 07 3163 3163   Email Kate.Hindmarsh@mater.org.au

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 MYAHCB/8A/9A 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 CF and will often be your first point of call for telephone advice after-hours.

Young Adult Support Unit

The Young Adult Support Unit (YASU) is a service that provides young people assistance with emotional needs and support when managing their health. The YASU team are based in the outpatient clinic and the CF team can easily organise for you to see them the same day as clinic if needed.

Doctors/medical staff

Dr Lucy Burr (Director Cystic Fibrosis)
Office 07 3163 6739 or  07 3163 8111 (ask via switch)   Email Lucy.Burr@mater.org.au

Dr Simon Bowler (Consultant Chest Physician)
Office 07 3163 1178 or 07 3163 8111 (ask via switch)   Email Simon.Bowler@mater.org.au

The 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 two consultant chest physicians, both with considerable experience in the management of CF, a senior registrar, a junior registrar and a resident medical officer. At outpatient reviews and during admission you will be reviewed by one 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 CF. 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 staff can contact one of the consultants.

Administration support

Mrs Cathy Churchward
Office 07 3163 1205   Email Cathy.Churchward@mater.org.au

Cathy will be able to assist you with booking and cancelling appointments. Often we may also have Cathy call you to provide you with information from the team. She is available Monday to Friday from 7am to 3 pm.

Other contact numbers

  • Mater Hospital Brisbane Switchboard—07 3163 8111
  • MYAHCB—07 3163 5967 or  07 3163 8963
  • Ward 9A—07 3163 7101
  • Ward 8A—07 3163 8968
  • Pharmacy—07 3163 8234
Mater acknowledges consumer consultation in the development of this patient information.
Mater Doc Num: PI-CLN-420002
Last modified 19/1/2018.
Consumers were consulted in the development of this patient information.
Last consumer engagement date: 18/1/2015
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