Living with kidney disease
Learning more about chronic kidney disease can help you increase your confidence to manage the condition and empower you to feel in control. The more you know about chronic kidney disease, the better equipped you will be to understand what's happening and why. Take each step at a time, and work with your healthcare team when you need further help, support or guidance.
We hope the information on this website will help you to have a better understanding of chronic kidney disease. We have included hints and tips that have supported others. The information has been written by healthcare professionals that care for children with kidney disease and their families.
A young persons experience of living with kidney disease
Living with kidney disease can sometimes be a challenge. Hear the views of a young person who has lived with kidney disease perspective as she shares her top hints and tips in the videos below:
My hints and tips for eating out when living with kidney disease
My hints and tips when following a fluid restriction
My hints and tips for remembering to take medications
My hints and tips for following a reduced salt diet
School
Starting school or a new school year is an exciting time. Breakfast, snacks and lunch are important for all children at school. Break times are a fun time to spend with friends and enjoy eating together. Eating also helps keep energy levels up during the school day. There can be extra things to consider when planning meals and snacks for a child with chronic kidney disease at school.
Planning in advance and communicating with teachers, catering staff and carers in school can help children enjoy eating and feel like they are included at break times. It may be helpful to plan whether school meals are eaten or packed lunches are brought into school.
Menu options and nutritional information of meals is usually available from schools in advance. This information can be discussed with the dietitian.
This information sheet has more tips on eating at school with chronic kidney disease
Physical activity and chronic kidney disease
How physical activity can be beneficial:
Being physically active improves long term health and wellbeing of children and adolescents at all stages of chronic kidney disease, dialysis and post-transplant [1-3]. Studies have shown benefits in improved endurance, energy levels and muscle strength[1-3]. Exercise can help to achieve healthy growth and improve heart fitness. When children enjoy activity, this boosts overall well-being and supports a positive outlook[4]. Regular physical activity supports overall health. We have developed some resources to help you along the way.
What kind of activity?
Choosing an enjoyable activity is the most important step. Involve the whole family - make it fun as well as healthy for everyone. Start with small amounts of activity each day to build up a habit of being physically active. There are lots of ways to become more active.
Download our resources for some more information on the beneficial effects of physical activity and ideas to get started.
Healthy eating after a kidney transplant
This short video provides basic information regarding healthy eating after a kidney transplant. It includes advice on how to achieve a healthy, balanced diet, ways to reduce your salt intake and information about food safety.
Tips for remembering to take your medications and nutritional supplements
Missing medications or forgetting to take nutritional supplements can happen - especially when you have to take a lot at different times during the day! Planning ahead and having a routine can help. Remember, your medications and supplements are important and help to keep you healthy.
Reminders
Here are some ideas for reminders:
- Text messages – use a service for text messaging reminders at usual medication and supplement times or see if your medical team has an option for messaging.
- Set up your phone or use an app for daily alarms at your usual medication and supplement times.
- Enlist a buddy – a family member or friend to double check to see if you have remembered your medications and nutritional supplements.
Making it easy
Here are some tips to make taking medications as easy as possible:
- Keep your medications where you need them. For example, if you take them at bedtime, have them next to your toothbrush, or if you take them with your meals, keep them at your spot at the dinner table.
- Keep medications handy when “on the go.” Some medications, like phosphate binders need to be taken when you eat food. So keeping a small amount in your bag or in the car can help to ensure you have them at the times when you need to take them.
- Use a medication box, coin purse or other fashionable or discreet container to keep your medications handy for when you go out.
Always keep your medications in a handy place but ensure they are kept out of reach of young children
Oral nutritional supplement drinks
Here are some ideas to help you to remember to take your oral nutritional supplement drinks:
- Plan to take your nutrition drinks as part of your schedule; a planned daily snack or part of your fluid restriction with a meal.
- Enjoy your supplement – make a shake or fun beverage using your supplement and other permitted ingredients such as syrups and milkshake powders.
Oral nutritional supplements for chronic kidney disease
Having kidney disease can affect your appetite and you may not feel as hungry as you used to. A poor appetite makes it difficult to eat enough and get all of the nutrients that your body needs. If this happens your dietitian can advise how to make changes to your diet to increase your intake.
In some circumstances, your dietitian may advise that you try oral nutritional supplement drinks.
What are oral nutritional supplements?
Oral nutritional supplements are drinks which provide energy, protein and other nutrients. Some are made especially for children and young adults with kidney disease. They are tasty and are often like having a milkshake, yet they are suitable for your special dietary needs. You can add syrups to them to make a different flavour drink or use them in recipes to give you more options.
To enable you to get enough energy, protein, vitamins and minerals
Getting the right amount of energy, protein, vitamins and minerals in your diet is important to keep you healthy and strong. If you feel sick or ‘off your food’ you may need an oral nutritional supplement drink to provide you with extra nutrition. Your dietitian will advise which supplements are best for you.
To stop weight loss
Weight loss due to a poor appetite can affect your health and wellbeing and it is very important that you do not become underweight. You can increase your energy intake to stop further weight loss by eating high energy foods and by taking an oral nutritional supplement. Your dietitian can advise you in more detail based on your needs.
If you are worried about your dietary intake or weight please speak to your dietitian. It is important to only take oral nutritional supplements which are recommended by your dietitian.
References:
1. Akber, A., A.A. Portale, and K.L. Johansen, Pedometer-Assessed Physical Activity in Children and Young Adults with CKD. Clinical Journal of the American Society of Nephrology, 2012. 7(5): p. 720-726.
2. Akber, A., A.A. Portale, and K.L. Johansen, Use of pedometers to increase physical activity among children and adolescents with chronic kidney disease. Pediatric Nephrology, 2014. 29(8): p. 1395-1402.
3. Alaylı, G., et al., Physical function, muscle strength and muscle mass in children on peritoneal dialysis. Pediatric Nephrology, 2008. 23(4): p. 639-644.
4. Hamiwka, L.A., et al., Physical activity and health related quality of life in children following kidney transplantation. Pediatric Transplantation, 2009. 13(7): p. 861-867.
