Living with Kidney Disease



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Living with Kidney Disease

A comprehensive guide


for coping with
chronic kidney disease

Second edition


Revised and reprinted December 2014
Citation: Ministry of Health and Kidney Health
New Zealand. 2013. Living with Kidney Disease:
A comprehensive guide for coping with
chronic kidney disease
. Second edition.
Wellington: Ministry of Health.

Published in December 2014 by the Ministry of Health


PO Box 5013, Wellington 6145, New Zealand

ISBN 978-0-478-44466-7 (print)


ISBN 978-0-478-44467-4 (online)
HP 6098

This document is available at:


www.health.govt.nz
www.kidneys.co.nz

logo logo

Contents


Acknowledgements 4

A note on kidney words 4



Introduction 5

Chapter 1: Chronic kidney disease in New Zealand 6

Chapter 2: Your kidneys 7

What your kidneys do and how do they work 7

When your kidneys don’t work properly 7

How do I know if I have kidney disease? 8

Measuring how your kidneys work – the eGFR 8

Chronic kidney disease doesn’t always lead to end-stage kidney disease 9

Types of kidney disease 10

Acute kidney injury 10

Chronic kidney disease 10

End-stage kidney disease 11

Prevention of kidney disease 11

Chapter 3: Chronic kidney disease 13

Signs and symptoms 13

Diagnosis 14

Blood tests 14

Urea and creatinine 14

Phosphate 14

Calcium 15

Potassium 15

Haemoglobin 15

Diseases that cause the kidneys to fail 15

Diabetes 16

High blood pressure 16

Glomerulonephritis or nephritis 16

Polycystic kidney disease 17

Reflux nephropathy 17

Vascular conditions 18



Chapter 4: Treatment options 19

What can I do to help myself? 19

Treatment choices 20

Delaying progression through diet 22

Medications 23

General 23

Blood pressure drugs or anti-hypertensives 23

Erythropoietin 23

Iron replacement therapy 24

Phosphate binders 24

Vitamins and minerals 24

Cholesterol-lowering drugs 25

Diuretics 25

Antibiotics 25

Treatments for itching 25

Alternative therapies 26

Dialysis 26

Haemodialysis 27

Peritoneal dialysis 29

Access for dialysis 30

Choosing a type of dialysis 32

Difference between the two forms of dialysis 32

Peritoneal dialysis 32

Haemodialysis 33

Kidney transplantation 34

Types of transplant and donors 34

Who can have a kidney transplant? 34

Live donor transplants 35

Advantages and disadvantages 36

The transplant waiting list 37

How does the transplant waiting list work? 37

The transplant operation 38

After the transplant 39

Anti-rejection medications 40

Caring for yourself after the transplant 41

Choosing not to start dialysis (conservative treatment) 43

What is conservative treatment? 43

Why might I decide not to have dialysis treatment? 44

What does conservative treatment involve? 44

What if I can’t decide? 45

How long will I live if I don’t have dialysis? 45

Will I have a choice of where I die? 45

Is deciding not to have dialysis suicide? 46

Chapter 5: Nutrition and kidney failure 47

Why is what I eat so important? 47

Protein 47

Sodium (salt) 48

How much should I drink? 48

Potassium 49

Phosphate 50

Carbohydrates and fats 50

What if I have diabetes? 51

What if I am a vegetarian? 51

Will I have to take vitamins and minerals? 51

Other points to remember 51

Smoking and alcohol 52

Nutrition after a kidney transplant 52



Chapter 6: Living with kidney failure – information and tips for patients, family members, friends and carers 54

Living with change 54

Adjusting to kidney failure 54

Who can I talk to? 54

How do people react when they learn they have end-stage kidney disease? 54

Lifestyle changes 57

Work 57

Leisure time 58



Food 58

Fitness and exercise 58

Holidays 59

Sexual function 59

Menstruation 60

Fertility 60

Getting support 61

Some suggestions to help you manage 61

Your kidney team 62

Where else can I find support? 63

For family members, friends and carers 64

Chapter 7: Dealing with your kidney care team 65

Making the most of your visits 65



Chapter 8: Financial assistance 67

Applying for a benefit 67

Income and asset tests 68

What benefits are available? 68

Jobseeker support 68

Supported living payment 69

Disability allowance 69

Extra assistance 70

Where do I start? 71

Getting the information you need 71

Visiting WINZ 72

Filling out the forms 73

Subsidy cards and other assistance for health care 73

Community Services Card 74

High Use Health Card 74

Pharmaceutical Subsidy Card 74

Additional help for kidney patients 74

Chapter 9: Resources, contacts and support 76

Kidney Health New Zealand 76

Useful websites 76

Appendix 1: Survival of people on dialysis 78

Appendix 2: Facts and figures about dialysis 79

Glossary 80




Acknowledgements


Living with Kidney Disease was written by New Zealand kidney health professionals and produced by Kidney Health New Zealand. Kidney Health New Zealand acknowledges and thanks Kidney Health Australia for its assistance with the production of this publication in the past and the New Zealand kidney health professionals who have contributed to its development. Thank you to the New Zealand Ministry of Health for funding.
Some of the material in this publication is also available on the Kidney Health New Zealand website: www.kidneys.co.nz

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