Last Reviewed August 2016 Page 1

Prevent, Detect, Support.

Fact sheet Cysts

Cystic causes pockets Benign cysts are non-cancerous This fact sheet covers the three of clear, watery fluid (cysts) to form in sacs filled with clear, watery fluid. most common types of cystic the kidneys. The cysts slowly replace They range from small blisters to kidney disease: healthy kidney tissue causing the large sacs filled with several litres • Polycystic kidney disease kidneys to become larger. This makes of fluid. Having a few cysts is not it harder for your kidneys to work unusual, particularly as you become • Medullary cystic disease properly. older. These cysts don’t usually need •  treatment and do not mean that you have . Cysts can develop if you have had long-term kidney problems, such as and have been on dialysis for a long time. This is called Acquired Cystic Kidney Disease (ACKD). These cysts are not inherited Kidney cysts Normal kidney (passed on from your parents) and do not usually need treatment.

What is polycystic kidney disease (PKD)?

Polycystic Kidney Disease (PKD) is Autosomal Dominant PKD - This is Autosomal Recessive PKD - This is the most common inherited cystic the most common inherited form of a less common form of inherited PKD kidney disease. It causes the growth PKD. If you have autosomal dominant where both parents have to carry of thousands of cysts (fluid filled sacs) PKD you have a one in two chance this gene. In this case there is a one in your kidneys. Both kidneys are of passing the faulty gene and in four chance of passing the faulty affected, but one kidney may develop associated disease to your children. gene to your child. Cysts can develop the cysts earlier than the other. The Sometimes, PKD can develop if in the early months of life or even cysts gradually grow, making your you have no family history, and it is before birth. Children with autosomal kidneys larger and reducing healthy thought to be caused by a different recessive PKD may have reduced kidney tissue. You may develop high genetic mutation. If you are planning kidney function any time during blood pressure and kidney failure as a on starting a family, you can have a childhood and teenage years, which result of PKD. PKD affects males and blood test and speak to a genetic can eventually lead to kidney failure females in equal numbers and the counsellor to reduce your change of or liver problems. cysts can appear at any age. passing the gene to your child. For more information about PKD There are two main types of PKD. see the Polycystic Kidney Disease fact sheet.

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What is medullary cystic kidney disease (MCKD)?

Medullary cystic kidney disease (MCKD) MCKD causes cysts to form in the Juvenile is is an inherited kidney disease. If you medulla (centre of your kidneys). Your very similar to MCKD but usually have MCKD it is likely that other people kidneys gradually lose their ability occurs in young children. Juvenile in your family have it too. In some cases to work properly, and may eventually nephronophthisis can also lead to MCKD is not inherited, but is due to a lead to kidney failure. Other health other eye sight problems. new genetic mutation. problems might include anaemia, kidney bone disease, gout and high blood pressure.

What is medullary sponge kidney? iteed d ees t Medullary sponge kidney is where cysts te en ein develop in the kidney’s urine collecting en ducts and tubules. The cause of edy medullary sponge kidney is not known. One or both kidneys may be affected. Complications include blood in the urine (haematuria), calcium in the kidneys, kidney stones or infections. d entes Kidney failure is rare but can develop t te if you have had repeated infections or en tey kidney stones. ine sses t te ete

How is cystic kidney disease diagnosed?

The severe symptoms of autosomal Diagnosing cystic kidney disease can recessive PKD usually result in an involve a number of tests including: early diagnosis. However, in most • Physical checks - your doctor may other cases of cystic kidney disease, detect high blood pressure or you may not notice health symptoms enlarged kidneys for many years. Physical check-ups, blood and urine tests, or even • Blood tests - to check how your ultrasound scans may not pick it up in kidneys are working to filter your the early stages. It is often found when blood and remove wastes you visit your doctor for other health • Urine tests - may detect blood and/ problems, such as urinary tract stones or protein in the urine (wee) or infections. Sometimes it isn’t found until high blood pressure or kidney • Ultrasound - is good at identifying failure develops. even quite small cysts • Computed Tomography (CT) and Magnetic Resonance Imaging (MRI) scans - can detect very small cysts. They may be required if the results from the ultrasound are not clear or more information is needed • Genetic testing - generally only used if cystic kidney disease runs in your family

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How is cystic kidney disease treated?

There is no cure for cystic kidney High blood pressure - Effective blood If cystic kidney disease means your disease. However, early detection pressure control is very important kidneys are very enlarged, you may and proper treatment can reduce or for maintaining your kidney function. need to avoid contact sports, as a prevent some of the complications Medications and a healthy lifestyle strong knock to your stomach area and maintain kidney function. can help to lower your blood pressure. can cause damage. Pain - May be due to kidney stones, Non-steroidal anti-inflammatory bleeding or infection. Talk to your medications (NSAID’s) should not be doctor if you are getting repeated taken without medical advice as they or severe back and kidney pain, or can worsen kidney function. headaches. Cysts can sometimes be Changes to your diet may also help drained to help extreme back and to treat cystic kidney disease. These leg pain. may include reducing salt, protein, Blood in the urine - May also be due to cholesterol (fats) and caffeine. Any kidney stones, bleeding or infection. changes should be made after talking Fluids, medications and bed rest may with your doctor or dietitian. be required. It is strongly advised that you do Urinary tract infections - Can spread not smoke. to the cysts in the kidneys. If you feel pain or are needing to urinate more often, speak to your doctor as soon as you can about antibiotic treatment. Kidney failure - Usually develops very slowly, over many years and may eventually require dialysis or a transplant. Cystic kidney disease does not redevelop in a transplanted kidney.

New developments THINGS TO REMEMBER There are several promising developments in preventing cyst • Cystic kidney disease causes pockets of clear, watery fluid growth in PKD. Trials are being done (cysts) to form in the kidneys, making it harder for your in Australia with medications that kidneys to work properly. may stop the sacs filling up with • Cystic kidney diseases include: polycystic kidney disease fluid. Results from worldwide studies have shown promising results for (PKD) which is the most common inherited form, medullary medications which prevent cyst cystic kidney disease, and medullary sponge kidney. growth and slow the decline of • At the moment there is no cure for cystic kidney disease. kidney function. These are expensive Early detection and proper treatment may reduce or prevent and have side-effects, and are not some of the symptoms and complications. yet available in Australia. However, progress is occurring.

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What does that word mean?

Anaemia - When there are only a small Genetic counsellor - someone trained Magnetic Resonance - An imaging number of red blood cells in the blood to help people understand and made procedure that uses a magnetic field or the blood cells are not working decisions around the medical, and radio waves to take pictures inside properly. Red blood cells carry oxygen, psychological, family and reproductive the body. It is especially helpful to so if you have anaemia you can feel effects of your genetic condition. They collect pictures of soft tissue such as weak, tired and short of breath. do not make decisions for you, but organs and muscles that don’t show up will help you reach decisions which on x-ray examinations. Blood pressure - The pressure of the are right for you and your family. blood in the arteries as it is pumped Mutation - A gene that is faulty and More information can be found from around the body by the heart. does not work like it should. This can The Australasian Society of Genetic be inherited or caused by environmental Computed tomography - An imaging Counsellors (ASGC) at www.hgsa.org. factors including diet and chemicals. procedure that uses special x-ray au/asgc. equipment to create a series of Non-steroidal anti-inflammatory Gout - is a type of arthritis which detailed pictures or scans of areas drugs (NSAIDs) - Medications are often causes pain in your joints. Your inside your body. used to manage pain and inflammation doctor will advise on a treatment plan (swelling and redness). They should Cyst - A sack full of fluid. which will include following a healthy only be used for short periods of time, lifestyle. Dialysis - A treatment for kidney so speak to your doctor if the pain does failure that removes waste products Hormone Replacement Therapy not get better. Some commonly used and excess fluid from the blood by (HRT) - can help women with NSAIDs include aspirin (in brands like filtering the blood through a special symptoms from menopause. Disprin), ibuprofen (such as Nurofen), membrane. There are two types of naproxen (such as Naprosyn), Kidney bone disease - kidneys play an dialysis; haemodialysis and peritoneal diclofenac (such as Voltaren) and important role in keeping your bones dialysis. celecoxib (such as Celebrex). healthy including levels of calcium, Gene - Each cell in the human body phosphorus and vitamin D. People Ultrasound - An imaging procedure contains about 25,000 to 35,000 with kidney disease often develop where an instrument is moved over the genes. Genes carry the information problems with their bones. skin, sending and receiving signals to that determines your traits, which are make pictures of your organs, including Kidney stones - Kidney stones happen features or characteristics that are kidneys and bladder. when salts in the urine form a solid passed on to you - or inherited - from crystal. These stones can block the (UTI) - causes your parents. flow of urine and cause infection, symptoms like needing to urinate kidney damage or even kidney failure. frequently or pain when urinating. It is caused by bacteria and may need to be treated with antibiotics.

This is intended as a general For more information introduction to this topic and is not about kidney or urinary meant to substitute for your doctor’s If you have a hearing or health professional’s advice. or speech impairment, All care is taken to ensure that health, please contact the information is relevant to contact the National the reader and applicable to Relay Service on our free call Kidney Health each state in Australia. It should be noted that Kidney Health 1800 555 677 or Information Service Australia recognises that each relayservice.com.au person’s experience is individual (KHIS) on 1800 454 363. and that variations do occur in For all types of services treatment and management due to ask for 1800 454 363 Or visit our website personal circumstances, the health professional and the state one kidney.org.au to access lives in. Should you require further information always consult your free health literature. doctor or health professional. Kidney Health Australia gratefully acknowledges the valuable contribution of Associate Professor Neil Boudville in the review of this material.

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