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Spleen Australia Registration (SAR) number _______________________________Spleen AustraliaInformation for patients, families and friends
Introduction3Background4The spleen5Asplenia and hyposplenia6Infection7Vaccinations8Antibiotics9Animal bites10Travel advice11-12Children13-14Spleen health checklist15Your privacy16-17Security of the database18Feedback regarding our service19-20Table of Contents2
Introduction People who have undergone a splenectomy or are living with a poorly functioning spleen are at increased risk of severe infections from certain bacteria, which can lead to life-threatening conditions like sepsis and overwhelming post-splenectomy infection (OPSI). Spleen Australia offers resources and strategies to help reduce the risk and severity of these infections. What Spleen Australia provides: Telephone education session with a qualified nurse Health information will be sent to you, your doctors, and, if appropriate, your family. A personalised vaccine and antibiotic plan based on current Australian medical guidelines. We will need access to your medical records from your healthcare providers and the Australian Immunisation Register (AIR). Included Resources: Information on infection prevention. A medical alert card for you to share with all healthcare providers. It is essential to manage your health after a splenectomy or if you have a non-functioning spleen. You and your doctor should regularly review medical recommendations, which can be found on our website www.spleen.org.au. Registering with Spleen Australia does not replace the need for professional medical advice. We will keep you updated with a newsletter via email with news and updated information. Please ensure we have your current contact details by emailing spleenaustralia@alfred.org.au or calling us on: VIC/TAS/WA: 03 9076 3828; QLD: 1800 775 336 We may also share updates regarding your vaccine and antibiotic plan with your doctors and other healthcare professionals as needed.3
Background More than 50,000 Australians live without a spleen (asplenia) or have a non-functioning spleen (hyposplenism). Spleen Australia is based at Bayside Health, The Alfred Hospital in Melbourne. The clinical service was established in 2003 Offers support and advisory services for patients and medical care providers Funded states are Victoria, Tasmania, Queensland and Western Australia Our goal is to reduce the risk of serious infections in this population through Education Vaccination plans Antibiotic recommendation Research Research shows that our service help reduce the risk of serious infection and sepsis. Do I have to register? Registration is not mandatory, and you are free to withdraw from the Spleen Australia service at any time. If you choose to withdraw from the service, we will no longer be able to provide you with support. If you choose to register with Spleen Australia, we encourage you to make contact at least every five years to make sure they are up to date with the recommended vaccinations.4
The spleen Functions of the Spleen Filtration of blood As blood flows through the spleen, any old or damaged red blood cells are broken down and removed from the body. This helps keep the blood healthy and working properly. Immune system The spleen helps protect your body from infection by removing bacteria from your blood and supporting the immune system. When these bacteria are detected, the spleen, along with lymph nodes and bone marrow, produce white blood cells, called lymphocytes. These cells help identify and destroy harmful bacteria. The spleen is particularly important for protecting against certain bacteria, including: Storing blood cells The spleen acts like a storage tank for red blood cells, white blood cells, and platelets. If the body experiences significant blood loss, the spleen can release some of these stored cells into the bloodstream when they are needed.The spleen is located on the left-hand side of the abdomen underneath the ribs and is usually the size of a small fist. 5Pneumococcus Meningococcus Haemophilus influenzae type b (Hib)
Asplenia Asplenia is the medical term used when a person does not have a spleen or absent spleen function. This may be because the spleen has been removed in an operation called a splenectomy, or because a person was born without a spleen, a rare condition known as congenital asplenia. Reasons for splenectomy include: Hyposplenia Hyposplenia occurs when the spleen is still present but does not work as well as it should. This means the body's ability to fight certain infections may be reduced. Associated medical conditions may include Risk of Infection People without a functioning spleen have a lifelong risk of getting serious bacterial infections. The spleen plays an important role in removing certain bacteria from the bloodstream. Without a fully functioning spleen, the body is less able to fight these infections. These infections may affect the: This serious type of infection is called an Overwhelming Post Splenectomy Infection (OPSI). 6Injury or trauma to the spleen Enlarged spleen Blood disorders Cancer Cysts or tumours affecting the spleenCongenital disorders (present at birth) Cancer Blood disorders Circulation disorders Autoimmune disorders Splenic infarction Gastrointestinal diseases Liver disorders Infectious diseasesLungs (pneumonia) Bloodstream (sepsis) Brain and surrounding tissues (meningitis)
Signs and symptoms of infection Act fast if you have any signs of infection: Seek medical attention if you have one or more of these symptoms: Although these infections are uncommon, they can become serious very quickly and may be life threatening. Recognising the early signs of infection and seeking prompt medical treatment can save lives. It is important to make sure that your family, friends and workplace are aware of these symptoms and what to do if they notice them. If you think you have an infection, seek medical attention immediately. Infection action plan: Visit your GP immediately if it is during opening hours Attend a hospital emergency department if you cannot see your GP immediately or if it is after hours Call an ambulance (dial 000) if you cannot attend an emergency department immediately If none of these options are available to you immediately, take your emergency antibiotic supply and continue to seek medical attention as soon as possible. You must be seen by a medical professional as soon as possible when symptoms arise and let them know that you do not have a functioning spleen.Fever of 38°C or higher (keep a thermometer at home) Feeling cold, shivering and uncontrollable shaking Diarrhoea and vomiting Extreme tiredness, drowsiness or confusion Severe headaches Feeling suddenly very unwell Muscle aches and joint pain7
Vaccinations Vaccinations are an important way to protect against serious infection. For people without a functioning spleen, vaccines are available to protect against the main bacteria that can cause severe illness. Staying up to date with recommended vaccinations is one of the most effective ways to reduce your risk of infection. These are: These vaccines are free under the National Immunisation Program (NIP). Spleen Australia will provide you and your GP with an initial immunisation plan. After that, it is important that you and your GP work together to ensure your vaccinations remain up to date. Also recommended, but funded based on certain criteria, are vaccines for: New vaccines may become available and vaccination recommendations can change over time. We recommend regularly checking the Spleen Australia Medical Recommendations on our website (www.spleen.org.au), for the latest advice, which is based on the current recommendations in the Australian Immunisation Handbook. Important: Living without a functioning spleen does not increase your chance of catching a viral illness. However, if you do get one of these common viruses, you may be more likely to develop a serious bacterial infection afterwards. This is why additional vaccinations are recommended.8Pneumococcal Meningococcal Haemophilus influenza type b Annual influenzaCOVID-19 Varicella-zoster virus (Shingles) Respiratory Syncytial Virus (RSV)
Antibiotics Daily People without a functioning spleen may be prescribed a daily antibiotic to help protect against certain bacterial infections. Daily antibiotics are usually recommended for at least three years after a splenectomy. Some people may need to take daily antibiotics for longer than three years, and some may need them lifelong. This includes: Immunocompromised (for example those receiving chemotherapy or taking long term steroid medication) Have previously had sepsis (OPSI) Emergency supply We recommend that all people without a functioning spleen keep an emergency supply of antibiotics readily available in case medical care is not immediately accessible. For signs and symptoms of bacterial infection refer to page 7. Antibiotic allergies Penicillin-style antibiotics are an important antibiotic used to prevent and treat infections in people without a functioning spleen. If penicillin is not suitable for you, alternative antibiotics can be recommended based on your individual needs. If you have a penicillin allergy, your doctor may refer you to a specialist for further assessment.9If you experience any signs and symptoms of a bacterial infection seek medical attention urgently. If you are unable to access prompt medical care, take your emergency antibiotics as prescribed and seek medical attention as soon as possible
Dental care Routine dental treatment does not usually require additional antibiotics simply because you do not have a functioning spleen. However, if you have another medical condition that increases your risk of infection, your dentist or doctor may recommend antibiotics in certain situations. If antibiotics are needed for a dental procedure, your dentist will discuss the appropriate treatment with you. Animal bites and scratches Capnocytophaga canimorsus is a type of bacteria that is commonly found in the mouths of dogs, cats and other animals. It can also be present on their claws. It does not usually cause illness in healthy people, but it can cause serious infections in people without a functioning spleen. There is no vaccine available to protect against this bacteria. Infection can occur if the bacteria enter the body through a bite, scratch or broken skin. Even a small bite can lead to a serious infection If you are bitten or scratched by an animal: 1.Clean the wound immediately using an antiseptic. If an antiseptic is not available, wash the area thoroughly with soap and water. 2.Monitor the wound closely for signs of infection, including: Redness Swelling Increasing pain Pus or discharge 3.Seek medical attention promptly if you develop any of the signs of bacterial infection: fever, chills or shivering, vomiting or diarrhoea, headache, confusion or feeling generally very unwell. A different antibiotic may be required to treat this type of infection.10
Travel There are some considerations you should make before travelling. Visiting an accredited travel clinic will help determine your need for extra vaccinations and preventive medication. This should be done at least 4-6 weeks prior to departure. Spleen Australia can refer you to the travel clinic at The Alfred Hospital, where you can attend a bulk-billed consult either in- person or remotely. If you develop any signs and symptoms of infection before, during and after travel seek medical attention immediately. If prompt care is not available, take your emergency supply of antibiotics and seek medical attention as soon as possible. Use this handy checklist to ensure you are prepared for your trip:11Travel checklist See a travel doctor or clinic at least 4-6 weeks before travelling overseas If prescribed a daily antibiotic, ensure you have enough for the whole trip Ensure you have an emergency supply of antibiotics (large dose) In case your luggage gets lost, we always advise you to keep an extra supply of antibiotics in a separate bag (e.g. carry-on bag and in your checked-in bag) Carry your medical alert card or wear a medical alert bracelet Check the need for anti-malarial tablets and mosquito repellent
Malaria If you travel to countries with malaria, you may be at greater risk of severe illness. Speak to a travel clinic about your need for preventive strategies, medication and other vaccinations. Babesiosis Is another infection caused by a parasite that is spread by bites from certain ticks. Although uncommon, it can cause serious illness, particularly in people living without a functioning spleen. Blood clots People without a functioning spleen may have a slightly increased risk of developing a blood clot, known as a deep vein thrombosis (DVT). DVTs most commonly occur in the deep veins of the leg or thigh, but they can develop elsewhere in the body. Long periods of sitting (more than four hours), such as during air travel or long car journeys, can increase the risk. To help reduce your risk: Get up and walk around regularly when sitting still for long periods If you cannot walk around, perform simple seated exercises such as foot pumps, ankle circles and leg raises. Stay well hydrated If you have concerns about your risk of blood clots, speak with your doctor before travelling. 12If you develop swelling, pain, warmth in one leg or shortness of breath after long journeys seek prompt medical attention
Care for children Some children are born without a spleen, have one that does not work properly, or might need to have it removed because of a medical condition or injury. Parents and carers receive the same information provided to adults, along with some additional resources designed specifically for children and their families including: Paediatric medical recommendations School and childcare information sheet Sepsis identification sheet These resources have been developed by Spleen Australia in collaboration with paediatric specialists to help families, schools and healthcare providers understand how to reduce infection risk and respond promptly if a child becomes unwell. Parents and carers can help protect children by ensuring vaccinations are kept up to date, attending regular medical appointments, and following any antibiotic recommendations provided by their healthcare team. As children grow older, it is also important to help them understand their condition and the importance of seeking help when they feel unwell. Teaching children about their health, carrying medical identification and sharing information with schools, childcare centres, sporting clubs and other carers can help ensure they receive appropriate care when needed. Any questions about your child's care, speak with your treating medical team or contact Spleen Australia for further support and information.13
Signs and symptoms of infection in infants and children Children living without a functioning spleen are at a higher risk of developing serious infections. These infections can become severe very quickly, so it is important for parents and carers to recognise the early signs of illness and seek medical attention promptly. One of the most important symptoms to watch for is fever. Any fever (temperature above 38° Celsius), should be taken seriously in a child with asplenia or hyposplenism, even if they appear otherwise well. Other signs that may indicate a serious infection include: If your child develops any of these symptoms, seek urgent medical attention and tell healthcare professionals that your child does not have a functioning spleen. Early treatment can be lifesaving.Fever (over 38° Celsius) or chills Irritability, restlessness or excessive crying Rapid breathing, working harder to breathe, or shortness of breath Vomiting or diarrhoea Neck stiffness General signs that your child is more unwell than usualUnusual sleepiness or difficulty waking Pale or mottled skin Refusing food or fluids Severe headache Rash, particularly one that does not fade when pressed 14
Spleen health checklistKnow the signs and symptoms of infection Take daily antibiotics if prescribed Always have emergency supply of antibiotics available Carry medical alert card or bracelet Tell healthcare providers you do not have a working spleen Stay up to date with recommended vaccinations, check with your doctor Get the flu vaccine every year COVID-19 vaccine as per recommendations Shingles vaccine as recommended RSV vaccine as recommended 15
16Your privacy and security
Privacy and Your Personal Information Spleen Australia collects personal and health information to register you and provide services that help reduce your risk of serious infection. The information we collect may include: Personal and contact details such as your name, date of birth, Medicare number, email, phone number and postal address Contact details for a family member, friend or next of kin only to be contacted if we are unable to reach you GP health summaries Vaccine records from the Australian Immunisation Register (AIR) Relevant hospital discharge summaries We may collect this information directly from you, your treating doctor, or other healthcare professionals involved in your care. To develop personalised vaccine and antibiotic recommendations, we may need to obtain some of your medical information. Your information is collected, stored, used and shared only for purposes related to providing Spleen Australia services and supporting your healthcare. Your antibiotic and vaccine plan will be shared with your GP and other healthcare professionals involved in your treatment and ongoing care. Research and Quality Improvement Spleen Australia may use information to support research and quality improvement activities aimed at improving the care and health outcomes of people without a functioning spleen. All research projects, including clinical trials and surveys, require appropriate ethics approval before they can proceed. Wherever possible, information used for research is de-identified, meaning you cannot be personally identified. If identifiable information is required, we will seek your permission first. If you do not wish your information to be used for research purposes, please contact us. De-identified information may also be used for: Service audits and quality improvement activities Educational presentations and teaching sessions Conferences and professional training Reporting to relevant health agencies and funding bodies 17
Security of the Website and Database Spleen Australia, based at Bayside Health, The Alfred Hospital is committed to keeping your personal information confidential and secure. Access to patient information is restricted to authorised Spleen Australia staff and approved researchers with ethics approval. The database is stored behind a secure firewall and staff use password- protected accounts and multi-factor authentication to access information. Your information is securely stored at Bayside Health and is not sent or stored outside Australia. We are subject to various Victorian and Commonwealth laws about handling personal and health information, including the Health Services Act 1988 and the (Vic) Privacy and Data Protection Act 2014 (Vic) You, or your medical practitioner, may request access to your personal information by contacting Spleen Australia using the details provided at the end of this booklet. Requests can be made by phone, email or fax, and all information releases are recorded in our database.18
19Feedback and contacts
Feedback regarding our service Please contact Spleen Australia staff if you have any feedback – we are always keen to hear from our patients about their experience with our service, whether it is positive or negative. Spleen Australia Bayside Health, The Alfred Hospital Level 1, Alfred Lane House, 55 Commercial Road, Melbourne VIC 3004 T: 03 9076 3828 (VIC/TAS/WA) T: 1800 775 336 (QLD) F: 03 9076 7946 E: spleenaustralia@alfred.org.au If you are not satisfied with how we have managed your concern, you are welcome to contact the Patient Liaison Office at Bayside Health, The Alfred Hospital. Preferred form of contact is via email: feedback@alfred.org.au. Phone number is 03 9076 8001. We acknowledge the people of the Kulin Nation, the traditional custodians and pay our respects to their culture and their Elders past, present and emerging. We welcome all cultures, nationalities and religions. Being inclusive and providing equitable healthcare is our commitment. If you require translated information, please contact us and we will arrange a telephone translator and/or translated documents. Copyright The copyright in the design and content of the Educational Booklet is licensed to Spleen Australia. The content is intended for personal use only. You may not otherwise copy, reproduce, transmit, display, perform, distribute, alter or commercialise the content in whole or in part in any manner without the Spleen Australia’s prior written permission. Please contact the Manager on spleenaustralia@alfred.org.au to request permission.Prompt Doc No: AHG0209795 v1.0 Approval Date: 11 July 2023 Review: 02/10/2026 Update by: 31/07/202720