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When you are told your kidneys are not working properly, there can be a lot to take in.
You might find it hard to understand a lot of the things people tell you and you might have a lot of questions but don’t know who or how to ask.
This booklet has been written to help you understand all you need to know about your kidneys and what happens when they get sick.
WHAT ARE MY KIDNEYS?
Kidneys are a part of your body. Most people have 2 kidneys and they are found underneath your ribcage at the back. Kidneys are a reddish-brown colour, bean shaped and are about the size of your hand when healthy. Most people are born with 2 kidneys but you only need 1 kidney working properly to keep you well.
WHAT DO MY KIDNEYS DO?
Your kidneys are a bit like your body’s own bin man! When you eat and drink, your body uses the good parts. Eating and drinking keeps us all healthy but also leads to leftover waste that your body cannot use. Your kidneys help your body remove this waste from your blood. This comes out of your body as wee (also called urine or pee). Kidneys also control things like blood pressure and make hormones and chemicals that help your body make red blood cells and keep your bones healthy. Chronic renal failure (CRF) is when the kidneys don’t work as well as they should, meaning that you have a build up for waste and water in your body.
WHAT HAPPENS WHEN MY KIDNEYS GET SICK?
Sometimes your kidneys can stop working. This can happen for lots of different reasons which will be explained to you by your kidney doctor who is also called a nephrologist. There are different ways of treating children and young people whose kidneys do not work and your doctor and the rest of the team will talk about what is best of you.
One way the doctor may decide to help is by giving you medicine. This medicine can help your kidneys work if they are sick. It is important that you take all your medicine to make sure it works. The renal pharmacist will give you a special book with the information about your medicines.
When your kidneys don’t work properly, there are some foods that you cannot eat too much of. Sometimes you might not feel very hungry. Your dietitian is an expert on food and knows all about what you can and can’t eat when on dialysis. Your dietitian will also tell you about dietary supplements if you need help getting more calories and energy.
Every child is different and will not neccesarily need the treatments listed below. Every case and condition is unique, not every child will need any form of dialysis and or a transplant.
WHAT IS DIALYSIS?
Your doctor might say that you need dialysis.
Dialysis does the work of your kidneys for you. There are two different kinds of dialysis.
- Peritoneal Dialysis
Both types of dialysis do the same job as healthy kidneys – they clean your blood and remove all the waste from your blood that your body doesn’t need.
Peritoneal dialysis (PD) is usually done at night when you are sleeping. A special tube called a catheter is put in your tummy in an operation beforehand. The catheter is attached to a dialysis machine, which pumps special fluid into your tummy to pick up all the waste that is not needed. After a while this fluid is drained out of your body and takes all the waste away. Usually you have to PD every night. This means you can go to school and do normal activities during the day.
Haemodialysis (HD) uses another type of machine to clean your blood and take the waste away. HD is carried out in hospital, usually three times per week. In this type of dialysis you also need a special tube called a catheter that will be put in during and operation and is usually in your arm or neck. The machine pumps your blood through this tube, cleans it and sends it back into your body. You can read, watch TV or even have school lessons when you are on HD.
One day you might need to get a kidney transplant. This is when a kidney from someone else is put into your body. Remember you only need one kidney working to keep you healthy and well. Sometimes you can have a pre-emptive transplant. This means that it happens before you have to go on dialysis.
After you have a transplant, the new kidney should keep working for many years so you will not need any more dialysis. However it is very important to make sure you take your medicine and drink plenty of fluids to help it work properly. Sometimes, on a very few occasions, the new kidney doesn’t work properly and you need to go back onto one of the other treatments we have talked about, but the doctors and nurses will do everything they can to try to make it work properly.
There are two different ways to get a kidney
- From someone you know, usually a family member. This is called a Living Related Donor Transplant (LRD). This operation can usually be planned and you will know exactly when you are coming into hospital. Whoever gives you the kidney will also have an operation to take their kidney out. They will be a little sore afterwards but completely healthy and usually only have to stay in hospital for a few days.
- From someone who had died in hospital. This is called a cadaveric or deceased donor transplant (CAD). For this operation you will go on a special waiting list and someone from the hospital will give you a call when a kidney comes up. This means you can find out about your operation at any time of day or night!
Wherever your kidney comes from, you will have an operation that lasts a few hours when the kidney is put into your tummy and connected to your bladder. You will be given special medicine to make you go to sleep so you will not remember anything about the operation. When you wake up you will be in Intensive Care/High Dependency Unit with lots of machines and lights. You will have tubes in your body to help get the pee out, check your blood and give you medicines. The doctors and nurses will watch you very carefully to help the new kidney work.
You will need to stay in hospital for a few weeks. Your family and friends can still come to visit you thought you might feel tired and want to sleep lots. You might not feel very hungry and might have special food through a tube in your nose. You should not feel sore but if you do, you must tell people looking after you so that you can get more medicine.
AFTER THE OPERATION
After a few days you will move back to the renal ward and you will stay there until you are well enough to leave the hospital. Once you go home, you will have to come back every day for a few weeks for check-ups to make sure your kidney is working and you are well. Over time you will come back to hospital less often although you will still always need regular checks.
You will have to take lots of medicines after your transplant. This keeps your kidney healthy and working. If you stop taking your medicine you will lose your kidney. This happens even if you do not feel sick at first so it is very important to remember your meds.
GETTING OUT OF HOSPITAL
When you get home, you will be able to have fun with your friends and catch up on everything you have missed when you were in hospital. You will have a lot more energy now that you have a new kidney so you can have even more fun!
You will be able to go to school, play with friends, run, ride on your bike, go swimming and play football but try not to bump your new kidney too much.
FOOD AND DRINK
After your transplant you will be able to eat some of the foods you couldn’t eat when you were on dialysis. You will also have to drink lots of water to help your new kidney work the best it can. Your doctor will tell you how much water you need to drink a day. This is called your daily fluid allowance. It is very important to drink as much water as your doctor tells you.
HERE TO HELP
Remember all the people in the hospital are here to help you and will answer any questions you may have.
Do you have any questions you would like to ask?
If you have any questions please e-mail them to firstname.lastname@example.org
and we will do our best to find an answer for you.