Your Guide To Living With Chronic Kidney Disease
Date issued: October 2023
Review date: October 2025
Ref: B-492/JM/Renal/Your Guide To Living
PDF: Your Guide To Living With Chronic Kidney Disease.pdf[pdf] 1MB
This booklet aims to tell you more about:
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How your kidneys work and what they normally do
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How kidney disease may make you feel
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What you can do to keep yourself as healthy as possible
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Your treatment options – including information about dialysis, transplantation and conservative management
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Information about medications that you may require
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Understanding your clinic appointments
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Who to contact and support that is available to you
Introduction:
You may decide to read this booklet all at once or prefer to read small sections at a time. You might find it helpful to share the information in this booklet with your family and friends.
At the end of each section you might find it helpful to write down two or three questions to ask when you attend your clinic appointment.
Whatever your questions, big or small, we are always happy to answer them.
The Kidneys
Most people have two kidneys. Your kidneys are two bean-shaped organs at the back of your body, below your ribs.
The functions of the kidney include:
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Filtering blood to make urine, enabling your body to get rid of waste and water it does not need.
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Regulating salt and minerals in your blood.
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Controlling your blood pressure.
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Producing the hormone erythropoietin (EPO) so your body can make red blood cells and stop you becoming anaemic.
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Keeping your bones healthy by helping to balance you levels of calcium and phosphate.
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Balancing the levels of acid within your body.
Living With Chronic Kidney Disease (CKD)
What is CKD?
When you have CKD this means that your kidneys are not working properly. This can be due to a number of different reasons which will be discussed with you at your clinic appointments.
The condition is likely to last for the rest of your life and your kidneys are unlikely to start working again. Although there is no cure for CKD, there are ways that you can slow down the progression of your kidney disease.
When your kidneys get to the point where they no longer function, dialysis and transplantation are very effective treatments that take over the work that your kidneys normally do. Some people choose not to have dialysis or a transplant, this is called conservative management. You can read a brief overview of these treatments over the coming pages.
How do you know the extent of my kidney damage?
When you have blood tests in clinic, we calculate your estimated Glomerular Filtration Rate (eGFR %). This gives us a rough idea of the amount of remaining healthy kidney function provided by your kidneys.
You may experience some symptoms when your kidney function drops below 30%. When your kidney function is around 20-25% we will offer you the opportunity to attend a health and wellbeing session to look at ways that you can help slow the progression of your CKD.
When your kidney function drops to below 20%, we will offer you the opportunity to discuss treatment options for managing your CKD and how these may affect your quality of life.
Once your kidney function drops below 10%, this is where you normally start your dialysis of choice.
Stages of CKD
|
Stage |
GFR |
Description |
|---|---|---|
|
1 |
90+ |
Early stage CKD. Normal or increased kidney function with evidence of kidney damage. |
|
2 |
60-89 |
Mild stage CKD. Your kidney function is more than 60% but you may have |
|
3a 3b |
45-59 30-44 |
Moderate stage CKD. Your kidney |
|
4
|
15-29 |
Advanced CKD. At this point you might start to feel symptoms from your CKD and you may need to start thinking about treatment options. |
|
5
|
Below 15 |
Kidney Failure. Your percentage of |
If you are reading this booklet you have stage 4 or 5 CKD.
What are the symptoms of CKD?
In the early stages you often have no symptoms. Later on, you may have some or all of these symptoms at different times:
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Tiredness and lethargy
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Lack of appetite
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Sickness
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Cramp in your legs, restless legs
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Itching
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Swollen ankles
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Shortness of breath
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Changes to sleeping patterns
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Less interest in sex
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Feeling cold
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Depression
Many of these symptoms will improve when you start treatment.
Some people do not feel unwell and may not have any specific signs or symptoms.
Keeping Yourself Healthy
Can I slow down the damage to my kidneys?
When your kidney function (eGFR) gets below 25%, we will invite you to a kidney health and well-being session where you will learn about the following:
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Blood Pressure Control
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Healthy Eating
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Keeping Active
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Giving up Smoking
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Reducing your Alcohol Intake
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Good Diabetes Control
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Keeping Well Hydrated
It is important at this stage that you attend your clinic appointments regularly, even if you feel well, because it is important that you have your blood checked regularly so we can monitor your condition.
We may also prescribe you medications to help protect your kidneys and give you advice on medications to avoid.
Treatment Options
When your kidney function (eGFR) gets below 20% or is on a downwards trend, we will invite you to an education session about treatment options for CKD where we will cover the following:
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Dialysis - a process of cleaning your blood to remove toxins and excess waste products from your body. There are two types of dialysis, haemodialysis and peritoneal dialysis, which we will go into in more depth at the session.
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Transplantation - an operation by where you receive a kidney from another person.
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Conservative Management - If you choose not to have dialysis or a transplant, but choose to manage the symptoms of kidney failure with support from your CKD team, Consultant Nephrologist and GP.
Understanding Your Medications
As mentioned earlier, we may give you medications to help your kidneys and relieve your signs and symptoms. These may include:
Antihypertensive (Blood Pressure Tablets)
You might need antihypertensives to reduce your blood pressure as having a high blood pressure can damage your kidneys. There are different tablets available which work in different ways to reduce your blood pressure. In the long term this will help your kidneys to stay healthy.
Diuretics (Water Tablets)
When your kidneys aren’t working properly, they don’t produce as much urine as before. This often means that fluid builds up in your body and you may get swollen ankles, shortness of breath and high blood pressure. Diuretics encourage your kidneys to produce more urine in order to remove some of this excess fluid.
Phosphate Binders
Phosphate binders help to reduce the level of phosphate in your blood. Reducing this can help to prevent you from itching and help to maintain your bone strength.
Sodium Bicarbonate
Sometimes you might get a build up of acid in your body and a rise in your potassium level. Sodium bicarbonate tablets are given to correct this imbalance.
Vitamin D
You may require Vitamin D to help protect your bones and control the calcium level in your blood.
Anaemia Management
People with CKD aren’t always able to make new red blood cells. Red blood cells carry oxygen around your body to supply the cells and tissues and give you energy. You can be given various treatments to help with managing the symptoms and to make new red blood cells.
You may feel weak, tired, cold or short of breath. We may ask you to have a blood test so that we can check your iron levels and haemoglobin. This will guide us to see which treatment may be of benefit to you.
Iron
Your body needs iron, folic acid and vitamin B12 to make red blood cells. There are different ways that you may be given iron. People with CKD often can’t absorb the iron when given in tablet form, therefore we may invite you to have some iron directly given into one of your veins (infusion). This will often work quicker and correct the deficiency straight away.
Erythropoietin
Erythropoietin is often referred to as EPO. This is a hormone which is normally produced by healthy kidneys which stimulates the bone marrow to produce new red blood cells. When your kidneys start to fail you do not produce enough of this hormone naturally and may become anaemic. We may need to replace this with an artificial EPO, in the form of an injection which you can either administer yourself or go to your practice or district nurse.
Your Clinic Appointments
You will be invited along to your local clinic to see the Consultant Nephrologist or your CKD Nurse. These appointments will alternate between the two. You will need to bring along a list of your medications and a urine sample for us to analyse. You will have your blood pressure taken and your weight measured. Sometimes you may require a blood test after your appointment if this has not been taken prior to your attendance.
Clinics are held in various locations in Devon and Cornwall. CKD clinics are held at Derriford Hospital in the main outpatient department twice a week. We also go out to some of the community hospitals including: Launceston, Liskeard, Holsworthy, Kingsbridge and Totnes. If you require an intravenous iron appointment then this can be done locally to you.
Useful Contacts
CKD Team
You can contact us on the below number Monday to Friday 8am to 4pm. If your query is not urgent please leave a message and we will get back to you.
01752 430310
For any urgent queries out of hours please contact Mayflower Ward, 01752 431485
Below are other useful contacts within the department:
- Diabetes Team 01752 431069
- Dietitian 01752 439961
- Plymouth Dialysis Unit 01752 431700
- Kingsbridge Dialysis Unit 01752 438250
- Saltash Dialysis Unit 01752 278451
- Holsworthy Dialysis Unit 01626 923807
- Transplant Live Donor Co-ordinator 01752 439955
- Transplant Nurse Specialist 01752 437145
