Grown ups with kidney failure A guide for parents Cathy Holman Renal Social Worker Your parents or relative has an illness which means that their kidneys no longer work properly. We call this kidney failure. We hope this information will help you understand a bit more about kidney failure. We’ve tried to explain how it might affect your parent and your family and how we hope to keep them as well as possible. This information can’t explain everything that you might want to know but it’s important to talk with your parents and ask them questions when you need to. Some of the words to do with kidney failure might be new to you, so we’ve put a list of tricky words, and what they mean at the bottom of this web page. The team of workers looking after your parent is called the Renal Team.This team includes doctors, nurses, dieticians a pharmacist, social workers and a psychologist. The Renal Team is here to help you and your family and they will be happy to answer any questions you have. The National Kidney Federation has produced many other leaflets about kidney failure and you may find it helpful to look at some of those with your family.We know that having someone in the family with kidney failure affects everyone in the family and we hope that this information will help you have a better understanding of what’s happening. What are kidneys and were are they ? Most people have two kidneys each the size of a fist. they lay to each side of the backbone, just below the ribs. To find your kidneys put your hands on your hips the slide your hands up until you can feel your ribs. Now, if you put your thumb on your back, you will know where the kidneys are. You can’t feel them but they are there. Their job is to filter blood, taking away all the waste products and extra water to make wee (also called urine). Kidneys do other jobs as well, such as making hormones to help make red blood cells and healthy bones. They also control the pressure of the blood. If a person has kidney failure, it means that their kidneys are doing less than a quarter of what they would if they were healthy. Kidney failure can happen to anyone at any age. There are around 32,000 people in Britain receiving treatment for kidney failure. What causes kidney failure ? There are many causes of kidney failure. If you want to know the cause of your parent’s kidney failure you’ll have to ask them. If they find it difficult to explain, then perhaps members of the Renal Team could help explain things to you. Sometimes though, we never know the exact cause a person’s kidney failure. How might kidney failure make your parent feel ? There are many ways in which kidney failure affects people and your parent may feel some or all of the following : • tired• less hungry than usual• sick (or they may actually be sick)• itchy• short of breath They may also have restless legs and strange tastes in their mouth. These are called physical symptoms and they make your parent feel sad, angry or worried. What can we do about kidney failure? Kidney failure can be helped, but not cured. Your parent will need to : • Follow a special diet. This means they can eat some types of food and not others and there will be some food they can only eat a little of.• Take quite a lot of tablets• Have a treatment called dialysis, or receive a kidney transplant.What is dialysis? Dialysis is a treatment that takes away the waste and any extra fluid (liquid) from a person’s body and helps to get the balance of chemicals right. Usually a person’s kidneys do this, but if the kidneys aren’t working properly, dialysis can do the job instead. There are two kinds of dialysis : • peritoneal dialysis (often called PD)• haemodialysis (often called haemo or HD) Peritoneal dialysis is done at home after some training, whereas haemodialysis usually takes place in hospital. Your parents will be able to explain which kind of dialysis they are having. Here’s a bit about how each type of dialysis is done. Peritoneal dialysis Before a person can do peritoneal dialysis (often called PD) a soft tube called a catheter has to be placed into their tummy (also called their abdominal cavity). This tube is placed there during an operation in hospital. This is usually done 2 or 3 weeks before dialysis begins. In peritoneal dialysis, special dialysis fluid is put through this tube into the abdominal cavity. The fluid is left there for about 6 hours, during which time your parent will carry on as normal. The fluid is then drained back out. This is something your parent will do themselves. It’s quite easy to do once they get used to it. It takes about 20 or 30 minutes to drain out the old fluid and put in the new fluid. Once your parent is confident doing this dialysis exchange, they can do other things like watch TV or read with you, at the same time. Haemodialysis Haemodialysis (often called haemo or HD) usually takes place in hospital, so if your parent is having haemodialysis they’ll have to travel to and from the hospital 3 times a week. In haemodialysis a person’s blood is passed through a dialysis machine (also called a kidney machine) and is then returned to them. For this to happen the nurses need to get access to the person’s bloodstream, which they do via a fistula. A fistula is where a vein and an artery join together. Veins and arteries are thin tubes that carry blood around the body. Your parent will have to have an operation to create a fistula. If your parent hasn’t got a fistula yet, then a temporary plastic tube (called a catheter) will be placed in their neck or on the top of their leg instead. You could check out with your parent how the nurses get access to their bloodstream. The nurses connect the person needing treatment to the kidney machine using either the fistula or the catheter. Each session of haemodialysis on the kidney machine usually lasts 4 hours. Haemodialysis (HD) or Peritoneal dialysis (PD)? There are good things and bad things about both haemodialysis and peritoneal dialysis. Some people can choose which one they think suits them best. Other people have to have the sort the doctor decides is better for them. If you want to know more about haemodialysis or peritoneal dialysis have a look at some of the other leaflets produced by the National Kidney Federation What is a kidney transplant? For many people the best form of treatment is to have a kidney transplant so they don’t need to have dialysis any more. A kidney transplant means having an operation in hospital where they’ll be given a kidney from someone else. The kidney may come from someone who’s died or from a living person who’s chosen to give (also called ‘donate’) one of their kidneys.Not everyone can have a kidney transplant and not everyone can give a kidney. After a person has had a kidney transplant they’ll have to take tablets to stop their body wanting to get rid of the new kidney. This new kidney can last many years but it won’t last forever, so later on your parent may have to start having dialysis again.The National Kidney Federation have lots of detailed information on kidney transplantation. You may want to have a look at this with your family to find out more. How will having a parent with kidney failure affect you and family life? Every child and every family is different and so will be affected differently by having someone in the family with kidney failure. However, families do tell us a lot of things that seem to be similar. We can look at these under three headings :1. Practical everyday changes2. Managing these changes in family life3. Your feelings Practical everyday changes The main practical everyday changes are : Hospital visits Your parent will have to make many trips to the hospital and sometimes stay overnight Time spent doing dialysis - This depends on the type of dialysis your parent does. Haemodialysis is done in a hospital for 4 hours at a time, 3 times a week. Peritoneal dialysis is done at home, either 4 times a day or overnight. Your parent may feel tired or ill some of the time and may not always be able to do all the things they’d like to do. This may make them feel sad, worried or angry at times. Managing these changes in family life Families deal with all these changes in a number of ways. Some see it as a bit of a challenge, like climbing a high hill or winning a race. Some get worried about it and others try not to think about it at all. In your family you might have all these different ways of managing. They are all normal ways of managing to live with kidney failure. Remember, people manage in different ways at different times. Can you think about some of the things you do when you’re unsure and a bit scared or something? Maybe you want to hide under the bedclothes or maybe you act very brave and tough when you don’t feel it. Families tell us that at times it can be difficult to manage all the changes that are going on and that talking with each other and with friends can be very helpful. You can also talk with members of the Renal Team. If you’d like to talk with the renal team ask your Mum or Dad to contact them. They will be pleased to listen to you and answer any questions you have. Your feelings Children and young people find their own ways to manage having a parent with kidney failure. They can sometimes feel sad, worried or angry about kidney failure just like their parents can. Children (and grown-ups too - but they don’t like to admit it!) can sometimes not even know they’re feeling these things but they begin to act in a difficult way. For example, if your Mum or Dad comes back from work after a bad day they might be cross with you even when it’s nothing to do with you. Or, if you get in trouble with the teachers at school you might be rude and angry with your Mum when you get home. Some grown-ups and children find that talking about how they’re feeling is very helpful. Children often draw pictures or act out stories as a way to make sense of things. Lots of children live in families where a parent has an illness that doesn’t go away. Although there are times when this can be difficult, we meet many families who live life to the full and enjoy the richness of family life. And remember, if you have any questions at all you can always ask a member of the Renal Team. They are there to support you and your family and to give you all the information you need. Key words abdominal cavity The place in your body where your stomach (also called your tummy) is. access A way into something artery A tube that carries blood from your heart to the rest of your body. We all have lots of arteries. bloodstream The blood that flows around your body in your arteries and veins. catheter A bendy tube used to drain liquid out of the body. dialysis A way of cleaning the blood. Usually kidneys clean the blood. If they can’t then dialysis can clean it instead. There are two kinds of dialysis. operation Something a surgeon does by cutting people open to help make them better peritoneal dialysis (also called PD) A way of cleaning the blood using a part of the body called the peritoneum. Usually kidneys clean the blood. If they can’t then it can be cleaned by peritoneal dialysis instead. peritoneum A lining in the abdominal cavity that can be used to clean the blood if the kidneys can’t clean it. pressure of the blood If there is too much blood flowing through the arteries this is called high blood pressure. If there is too little blood flowing through the arteries this is low blood pressure. The pressure of the blood is controlled by the kidneys. psychologist A person who can help people deal with difficult feelings renal Anything to do with kidneys. social worker A person who helps people when they’ve got practical or emotional problems. surgeon A doctor who does operations. urine Also called ‘wee’. Urine is a waste liquid that’s made by your kidneys. It collects in your bladder and leaves your body when you do a wee. vein A tube in your body that carries blood to your heart. We all have lots of veins. The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.