What can I do ?

One of the key things that our patients tell us is the importance of understanding your own condition and the role that you play in preventing problems. Often there is an element of denial when you find out that you have cystinuria. We cannot emphasise enough the importance of simple measures, such as drinking fluids, in preventing stone episodes.

There are a number of general measures that are advised to prevent or minimise stone formation. These include:

1) Maintaining a good intake of oral fluids, usually so that the urine is kept fairly colourless. If it is strong and yellow coloured that is a sign of concentrated urine and you are not drinking enough. You can also measure the amount of urine you pass in 24 hours as this is more important than how much you drink. A non-stone forming person passes around 1.5 litres of urine/ day but you should be aiming for between 2 and 3 litres/ day. Ideally you should pass urine at least once in the night if you are well hydrated. You can measure your 24 hour urine volume by ‘peeing’ into a jug and noting the amount each time then adding it up. It is not necessary to do a hospital test for this. It advisable to repeat the process as the seasons change or if your job changes as your requirements can vary. It also acts as a reminder and incentive to keep up with what can be a difficult habit for a lot of people. (To understand why drinking is important, see 'solubility and saturation' in ... tell me more).

2) Treat and investigate episodes of urine infection promptly, as untreated urine infections increase the speed of stone formation.

3) Investigate episodes of stone pain promptly so that stones can be treated in the least invasive way possible before they get too big.

4) If you have stone pain and a fever you should seek medical attention as an emergency. If a kidney is ‘blocked’ by a stone in the presence of infection (indicated by a fever) the kidney can suffer damage in a matter of hours/ days.

5) For cystine stones, we recommend making the urine less acidic (alkalinisation). This is usually done after measuring the pH (acidity) of the urine using special sticks or sometimes a digital monitor. Urine can be alkalinised with potassium citrate or sodium bicarbonate. Although sodium bicarbonate is more palatable it is discouraged as it increases the risk of stone formation due to the sodium.

6) Look at dietary factors (see Diet - What should I eat ?). Generally, diets high in salt and animal protein are bad for cystine stone forming patients. Overall a healthy mixed diet is recommended. However, in cystinuric patients, it is thought that limiting the amount of an amino acid (methionine) may reduce the incidence of stone formation (see ... tell me more).

7) Addressing factors like diet, exercise, lifestyle to reduce the risk of progression of kidney damage or impairment (known as chronic kidney disease or CKD).  Kidneys are unable to repair themselves so scar as a natural part of ageing.  While the stones may result in damage to your kidneys it is important to address other risk factors that might cause damage to the kidneys in other ways.  These factors are the same as those which can damage all blood vessels (as the kidney is basically a complicated blood vessel) and are familiar to most people - these include smoking, alcohol, high salt diet and obesity. Measures you can take to reduce these risk factors are:

  • Not smoking
  • Limiting alcohol intake
  • Eating a healthy balanced diet low in salt and saturated fats
  • Controlling cholesterol
  • Controlling diabetes (if you suffer with this condition)
  • Taking regular exercise
  • Ensuring you weight is controlled (Body Mass Index (BMI) under 25) - use this calculator to check your BMI
  • Making sure your blood pressure is within the normal range

Blood pressure can be controlled with diet and exercise but if it starts to be above 140/80 consistently then medical treatment may be needed.  Also high blood pressure can develop as a result of kidney damage.  Initially we would ask your GP to monitor your blood pressure over a number of weeks before starting treatment.  Some patients find it useful to measure their own blood pressure and a number of monitors are available (http://www.bhsoc.org/bp_monitors/automatic.stm).  The blood pressure target is 135/75 with minimal protein in the urine when we measure it.  Normal blood pressure is around 120/70.  There are many medications available to control blood pressure and the right tablet will be chosen with your GP.

8) If your kidney damage becomes progressively worse then you may need to be seen in a specialist kidney clinic to help to explain and deal with problems that might occur as the kidneys reach about 20-30% of normal function.  Chronic kidney disease is broken down into stages (1 and 2 being normal, 3 being mild impairment, 4 moderate impairment and 5 being a time where we have to plan to replace the functions of the kidney) .  Most people can remain completely well with as little as 30% kidney function (CKD 4). (More information is available at these sites: http://www.kidney.org.uk/medical-info/index.html and http://www.kidneyresearchuk.org/special-projects/summary-of-able-projects.php).

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