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How to monitor and manage my kidney disease

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The Advanced kidney clinic care looks after people with stage 4 or 5 kidney disease. As a patient diagnosed with advanced kidney disease you will be reviewed and monitored by the Kidney consultant and a nurse specialist until you have a transplant or start dialysis in this clinic. If you choose not to have either of these treatments you will remain under their care as long as you are fit enough to attend.

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The aims of your management is to continue the correct medical management for your condition, assist with your symptoms and support you in your decision making with regards to your treatment options.

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You may also benefit from some other treatments that have been proven to benefit people with advanced kidney disease and your specialist will consider these when it is appropriate.

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This plan is divided into the following sections:

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About my clinical team
Recommendations to patients
List of measurements that you and your Dr or nurse will monitor
List of possible symptoms that you and your Dr and nurse will monitor
Traffic light symptoms guide

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About my clinical team

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Recommendations to patients

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Take your medications as prescribed. If you think any of your tablets are disagreeing with you please inform your GP. Your GP will seek additional advice from your specialist team if necessary.
Don't smoke.
Keep alcohol intake to below the recommended government guidelines
Try to be as active and exercise as is safely possible.
Eat a healthy diet. If you have been advised of restrictions by your specialist team a renal dietician is available to offer advice. Ask your nurse specialist for a referral.

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This care plan is to help you and your family self-manage your kidney disease. You can use this plan as your online resource folder and to track symptoms. You can access additional information such as videos, information from kidney charities from resources available in the Library section

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The Advanced kidney care clinic looks after you when you get to stage 4 or 5. Ask your team what stage you are at and what your GFR or level of kidney function is at.

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List of measurements that you and your Dr or Nurse will monitor

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Blood pressure

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You will be advised what range of Blood pressure (BP) is best for you. You are encouraged to purchase a BP machine so that you can monitor your BP at home. We recommend looking at the pages which explain blood pressure and reading the leaflet on taking your Blood pressure which also gives advice on buying one.

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If you have financial hardship and need help to purchase a BP monitor you can apply to the West London Kidney Patients' Association. In addition read this leaflet from Kidney Care UK for information on types of grants and how to apply.

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Kidney Function

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Your kidney function will be measured by a blood test that tells us how much Creatinine (waste) there is in your blood. A number called the Estimated Glomerular Filtration rate (e GFR) is calculated which will tell you the level of kidney function. The picture below explains the stages. You can learn more about kidney function by attending our 'Know your kidneys' seminar, speak to your nurse specialist if you are interested:

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Anaemia

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Your haemoglobin will be monitored. This tells you if you are anaemic. Treatments for anaemia include iron tablets or infusion and/or a hormone injection called Erythropoietin (EPO).

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Bone health

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The kidneys play a role in keeping your bones healthy. A blood test to monitor the Calcium, Phosphate and Parathyroid hormone level will tell us how your bone health is. You can read more about bone health in kidney Disease here:

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Fluid balance

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The kidneys play a role in keeping the fluid in your body balanced. You will have a physical assessment by the nurse specialist or Doctor to assess your fluid balance. Weight and blood pressure also tells us if your fluid is balanced . It is useful to keep an eye on your weight in Kilograms (KG). Sometimes you may be asked to monitor it regularly.

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In general 1.0KG weight = 1.0 litre of fluid.

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It is recommended that you drink 2.0 litres of fluid per day unless you are taking diuretics (water pills) or have been advised by your Doctor or nurse to reduce your daily intake.

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More information can be found about fluid balance here

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The signs to look out for dehydration or too much fluid in your body are listed in the traffic light symptoms guide below.

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List of Possible Symptoms that you and your Dr or Nurse will monitor

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People with Kidney disease rarely suffer any particular symptoms until their kidney function has fallen to stage 4 or 5. Symptoms vary from person to person, no two people would experience the same symptoms. Here is a list of some of the common ones that you may experience. The traffic light symptoms guide will help you to manage your symptoms and know what to do if they change or get worse. Note that some symptoms can be caused by more than one problem for example breathlessness could be related to fluid level or anaemia. For this reason the symptoms are grouped to help you.

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Lack of appetite
Weight loss
Vomiting
Bad taste in mouth
Halitosis (bad breath)
Tiredness
Lethargy
Dizziness
Itching
Dry skin
Hair loss
Loss of libido
Shortness of breath
Swollen ankle
Insomnia
Cramps

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If you experience any of the symptoms listed above, please use this plan to record this information. To do this, select the Edit plan button at the top of the page, select the List of Possible Symptoms that you and your Dr or Nurse will monitor hyperlink, record your symptoms in the relevant sections of the plan and select Save to save the information you have added.

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Additional symptoms I have experienced (not listed above)

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Please note that your doctor or nurse will not be routinely checking this information. So it is important that you contact them directly about anything concerning you.

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