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Kidney services information for patients

Treating people with kidney disease

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Information for patients

This section gives information about your kidneys, about chronic kidney disease (CKD) and the treatment options for CKD. It also provides information about the services we provide, both in our hospitals and in our satellite centres in the south east of England.

About your kidneys

Most people have two kidneys located at the back of your body, below your ribs. They have many functions, including filtering your blood to make urine, controlling your blood pressure, making new red blood cells and keeping bones healthy. If your kidneys are not working properly some or all of these functions will be affected.

About kidney disease

Chronic kidney disease or CKD means that your kidneys are not working properly. Chronic means it is long term. For many people CKD can be managed by keeping a healthy lifestyle and taking medication to prevent raised blood pressure. Blood tests are used to determine the amount of kidney damage, this is known as the stage of CKD. For more information about the stages of kidney disease, visit the NHS website. If your kidney function deteriorates to stage 5 you will need to start treatment in the form of dialysis, transplantation or supportive care.

About your treatment options

You can read or download our information booklet 'Your kidneys, your health' – a guide to living with early stage chronic kidney disease (PDF 1.16Mb). This booklet explains the treatment options for CKD stages 1-3.

If your CKD progresses to stage 4-5 you will need to start thinking about the treatment options available for kidney failure.

  • Having a kidney transplant, this may be from a live donor or from a deceased donor. You can find out more about kidney transplantation on the Kidney Care UK website.
  • Having dialysis, this may be done at home or in a dialysis centre. You can find out more about having dialysis on the Kidney Care UK website. To find out more about home dialysis, please read or download our information booklet 'Home dialysis - your questions answered' (PDF 593Kb).
  • Supportive care, this is treatment without having dialysis or a transplant. Some people choose this option if they feel that dialysis may not improve their quality of life or their survival. You can read more about deciding not to have dialysis on the Kidney Care UK website.

You can read or download our information booklet 'Your kidneys, your choice' – a guide to living with kidney failure (PDF 1.11Mb). This booklet explains the treatment options for CKD stages 4-5 including information on diet and medications. The booklet also outlines what support is available and suggests how to carry on leading a full and active life with kidney failure.

Kidney information films

A series of four short films have been produced for patients living with kidney disease. The films were generously funded by Guy’s and St Thomas’ Charity. They aim to let patients know about the different options available for managing their condition and will help them make informed choices about their treatment.

Living with early stage kidney disease

  • Living with early stage kidney disease – video transcript

    Sue: Hello, my name is Sue Lyon. I've been a kidney patient for over 40 years after being diagnosed at Guy's and St Thomas' when I was 25. Hi Lorna.

    Lorna, receptionist: Good afternoon Sue.

    Sue: I was treated with home haemodialysis, and then I was fortunate enough to have a deceased donor kidney transplant 32 years ago, and I'm pleased to say it's still going well.

    The team at Guy's have asked me to introduce this series of four films.

    Each film focuses on a particular aspect of the kidney journey, starting with diagnosis.

    The films feature clinicians talking about various aspects of chronic kidney disease, including treatment choices.

    The films also feature patient's stories, and we hope by listening to these stories, you'll feel empowered to become involved in your care and work in partnership with your team.

    Dr David Game, kidney consultant: Chronic kidney disease, or CKD, means your kidneys are not working properly.

    Chronic doesn't necessarily mean serious, it means it's been going on for a long time and will go on for the rest of your life.

    However, most people with CKD do not develop kidney failure, and most people will live the rest of their life with mild CKD and no symptoms of it.

    If you have mild, chronic kidney disease, it's important to reduce the chances of the kidney disease getting worse by adopting a healthy lifestyle, and this may involve all, or some, of what we call the big six.

    This means eating healthily, taking regular exercise, and giving up smoking. You should also reduce your alcohol intake. It's important to keep your blood pressure down. Some lifestyle factors can help with this, but most people will need to take tablets. If you're diabetic, it's important to keep your diabetes under control.

    With chronic kidney disease, like any chronic condition, it's important to work in partnership with your healthcare team. Therefore, you should attend any appointments with your kidney clinic or with your GP, and it's essential that you take any medications that are prescribed to you.

    So Glenn, we've known each other for some time now - how long is that again?

    Glenn, kidney patient: It's just over eight years.

    David: You must have been quite nervous when we first met?

    Glenn: Yeah, it was a really scary time. You get this diagnosis, you don't really know what's going on, and it's scary. It is scary.

    David: With chronic kidney disease, we think it's very important to establish a kind of partnership between the healthcare people and the patient, so that you can feel comfortable to manage your own condition as well as seek advice. What sorts of things did you do to try and improve your situation?

    Glenn: Stop smoking. I cut down at first, then I stopped; I watched how much I was drinking, because I do like a drink; healthy eating and taking exercise - I started doing boot camps, I'm not sure if you remember, in St James' Park a couple of times a week; obviously taking my medication when prescribed, I don't think I've ever missed a day of my medication because it's structurally built into my day.

    David: Most people with chronic kidney disease don't have a progressive form of that condition, but unfortunately you do and did. One can make a prediction based on blood tests to see how long your kidneys are likely to survive without needing dialysis or a transplant, and when we first met, we predicted that might be about four to five years, something like that. But I think you've described a lot of changes that you've made to slow down that process. So how did that go?

    Glenn: Well it worked. I'm here eight years later, so it's almost double than was initially thought, or forecast, and I think the thing is it's down to working with you guys, obviously, but also the changes I've made myself.

    David: So that really illustrates nicely what we're trying to achieve in the kidney clinic for people with the progressive form of kidney disease which is to slow down that process for as long as possible by working in partnership with our patients.

    Glenn: With you guys.

    David: Thank you very much.

    Sue: If your kidney disease does progress you'll need to think about treatment, either dialysis or transplantation, and these topics are covered in the next two films.

 

In this film we learn about early stage chronic kidney disease or CKD. A patient tells us how making changes to his lifestyle has enabled him to delay the progression of his CKD.

Having dialysis

  • Having dialysis – video transcript

    Kevin: Hello, my name is Kevin. I'm one of the renal dialysis matrons here at the Borough Kidney Treatment Centre, where some of our patients attend for regular dialysis.

    Haemodialysis takes over the function of the kidney, which helps remove toxins and waste from the body, and excess fluid.

    Blood is taken from the body, through the dialysis machine, through the artificial kidney, and then the fresh, clean blood is returned back into the body.

    Dialysis normally takes place within one of our dialysis centres.

    Some patients may wish to do some or part of their dialysis themselves, and we will train you to do that, and this is normally performed in the dialysis centre.

    We also have the option of home dialysis, where patients would like to be trained to go home independently and perform their own dialysis.

    This is under the care and support of the home dialysis team, so the choice is yours.

    Adisa attends the dialysis centre three times a week to perform his own dialysis.

    This is what we call self-care. He is fully independent with his care, but we supply nursing support should he need it.

    Adisa: My name is Adisa. I'm a regular patient here at the Borough Lane centre. I dialyse three times a week, generally Monday, Wednesday, Friday, to fit around my university studies.

    I've been dialysing now for about five years - just over five years.

    The great thing about self-care: it allows me to pretty much pick and choose what time of the day I can dialyse.

    I can look after my parents if they require any assistance. I'm going to be getting married soon, so I'm here to spend more time with my lovely wife when she comes, and my university studies.

    The learning process for doing self-care isn't very long, and it's not very difficult really.

    We receive our training whilst we're dialysing, so it takes a while, but the whole process is pretty straightforward.

    I chose self-care because I found it to be quite empowering, where you can determine and decide your own healthcare.

    Kevin: Enoch has chosen to dialyse at home. This is what we class as home dialysis. The hospital supplies most of the equipment, including the dialysis machine and chair, which is maintained by the hospital.

    Enoch: Hi, I'm Enoch and I've chosen to have home haemodialysis.

    Last year my consultant decided I have to start dialysis. From there I was introduced to the home dialysis unit, where they had a seminar, and I went, and I saw how home dialysis makes people's lives much easier.

    I dialyse four times a week, depending on when it suits me.

    Home dialysis also helps me fit around my family; for instance, if I had family functions, or I had to go somewhere, I dialyse so that it doesn't disrupt my movement.

    The learning of the machine took approximately a month.

    The home dialysis unit do take absolutely good care of me.

    I don't see dialysis as a hindrance, I don't know whether because it's home dialysis I'm doing now, because it fits around my life perfectly.

    I do whatever I want to do, at any time I want to do it, based on how often I want to dialyse. I would encourage anybody who wants to go on home dialysis to do it, because it gives you enough freedom.

    Kevin: Amaka chose to do peritoneal dialysis at home. This involves having a small tube placed in your tummy. This allows fluid to be drained in and drained out. This allows toxins to be removed from the body including excess fluid. This is usually performed overnight with a small machine.

    Amaka: My name is Amaka and I chose to go on to peritoneal dialysis because it fitted in with my lifestyle.

    The type of dialysis I am on is called peritoneal dialysis. It required a small operation to feed a catheter into my abdomen and I hook myself up to a similar machine at home.

    My treatment runs over a course of eight hours every night while I'm sleeping, and when I wake I disconnect from the machine and carry on with my day.

    Training consisted of a week's worth of training. In the beginning, it was very daunting at first thinking about how I was going to set up the machine, but after two days I was confident and able to set up my machine no trouble, and it was actually really easy.

    I have to do my treatment every day but it's also a gentler form of dialysis.

    It's helped me remain active, I'm able to still look after my niece and run around and not think too much about what I need to be aware of in a week because my treatment runs at night.

    I've also been on holiday with my dialysis machine. I'll just pack everything up in the car. Baxter will provide you with the supplies you need for that period of time and you're good to go.

    Sarah:Hello, I'm Sarah. I'm one of the supportive care nurses who work as part of the supportive care team at Guy's and Thomas'.

    There are some patients who decide not to have dialysis. This may be because of great age, frailty, or because of other illnesses.

    If you do decide not to have dialysis or a transplant, we would anticipate that your kidney function would continue to deteriorate over time.

    When you're managed supportively for your kidney failure, you'll be looked after by the kidney team, by the community palliative care team, your GP and community nurses.

    The aim of supportive care is to ensure that we meet your needs, and that of your family and loved ones.

 

This film explains how dialysis works. It features patients talking about different types of dialysis and how they fit the treatment into their lives.

Having a kidney transplant

  • Having a kidney transplant – video transcript

    Chris: Hi, my name is Chris Callaghan. I'm a transplant surgeon at Guy's Hospital. I'm involved with kidney transplantation, also pancreas transplantation.

    A transplant is when an organ is removed from one person and put into another person's body.

    A transplant can either come from someone who's passed away, a deceased donor, or from a living donor.

    Transplants can be a heart, a lung, a kidney or a pancreas or other organs and for some patients with diabetes and kidney failure, a kidney and pancreas transplant might be suitable.

    For most patients with kidney failure, a kidney transplant is the best option.

    If you have kidney failure then we would hope that a kidney transplant would not only prolong your life but give you a better quality of life and give you the best chance of having the type of lifestyle that you had before you developed kidney disease.

    Although kidney transplantation is the best option for most patients with kidney disease, it's not always the right option for all people.

    There are risks and benefits that come along with kidney transplantation and it's important that your treatment options are raised with you as soon as possible once you have the diagnosis of kidney disease.

    The kidney team will discuss the risks and benefits of transplantation with you as soon as possible so that you can make a decision about what's best, not just for you, but also for your family.

    Cheryl: Hello my name is Cheryl. I donated my kidney to the kidney sharing scheme and this is my husband George.

    George: My name is George, I'm Cheryl's husband. I'm a recipient of a kidney from the kidney sharing scheme which means I am a kidney transplant patient. I was diagnosed with chronic kidney failure three years ago. As a result of that I went on to dialysis.

    Cheryl: When we found out that George needed a transplant the doctor told us about the different options that we could take. One was for him to be on the deceased list. The other option was for family to donate. So I agreed, I said that I would do that. I had to be worked up for that, so they gave me lots of tests but we found out that our blood groups weren't compatible. So the other option that they told us we could do was what's called the shared scheme. Basically what that meant was they would have a pool of people and then every few months they would look at those pool of people and see whose blood groups matched. I wasn't concerned. I wasn't worried. I knew it was something that I wanted to do. So for me personally there weren't any concerns.

    George: It's a big operation. I didn't realise how big it is, so it does take a lot out of you, but the whole process for us was a positive experience.

    Cheryl: Anyone considering doing the kidney sharing scheme is to go ahead and do it. For us it was the quickest, it was the best way. We were very, very informed at all times, lots of communication, so I would say yes go ahead and do it.

    Christian: Hi, I'm Christian. I'm 25 years old, and five and a half months ago I had a kidney transplant from a deceased donor. I waited for six years for a kidney and it was quite nervous at some times. You'd always have to figure out who was calling the phone.

    It was actually on New Year's Day that I got the phone call, so I didn't really expect it at all. I thought it was just a relative or someone calling to say Happy New Year. It was quite early in the morning so it woke me up. When I realised the importance of the call I grabbed everything I could and quickly ran to the hospital.

    The team at Guy's Hospital where I had my transplant on Richard Bright Ward were really helpful. What seemed to me a really panicky situation, having to quickly run in and not knowing whether or not I'd have my transplant, they seemed able to calm me down, and very good standard of care I think at Guy's Hospital.

    Previously when I was on dialysis, work was really hard to either get into or keep focused and just six months after transplant I'm ready, going in for interviews for the career choice that I really wanted to do.

    At the moment I feel really great. It's hard to believe that only six, seven months ago I needed to be hooked up to a machine just in order to have a decent standard of life.

    To other people waiting for a kidney, I would say I really hope you get one soon. It makes all the difference in your life. And to those who are debating whether to go on the list or not, there's obviously only one choice really that it should be to have a kidney transplant.

    Jillian: Hello my name is Jillian. I'm 45 years old and I had a kidney-pancreas transplant four years ago at Guy's and St Thomas'.

    I've been diabetic since the age of 18 which had affected my kidneys over the years and gradually they just became less and less functional, and I'm finding I'm very tired all of the time so that was really difficult.

    The people at Guy's and St Thomas' suggested to me that I could just have a kidney transplant, but also have a kidney and pancreas transplant and gave me lots of help and support in terms of making the decision.

    It was a really nice feeling for me to have a choice in terms of my future and the different routes that I could take and it was fully up to me to decide whether I just wanted to have a kidney transplant or the kidney and pancreas transplant. They gave me loads of leaflets, videos, I went along to a transplant education day. For me I came to the decision quite quickly and easily. For me the advantage is being not having to be a diabetic anymore after 23 years was not just going to be amazing for me but also my family and my friends.

    Also that having a new pancreas would mean that my new kidney wouldn't be affected any more by the diabetes. For me post-transplant, it was so exciting to see the improvements in my health. It sounds silly but the first time I walked up a hill after the transplant I was literally in tears of joy when I got to the top, just to start feeling normal again.

    The staff at Guy's have just been fantastic. I've always been thoroughly supported, really well looked after and always felt like the decisions that I took were supported by them.

    Chris: For patients with kidney failure and who would like to have a kidney transplant and are suitable for it, a kidney transplant may come from a living donor or a deceased donor.

    For most patients who decide to have a transplant we would suggest that a living donor would be the best option, as these kidney transplants most often work straight away and work for longest in the long run.

    For patients who are unable to find a living donor, a deceased donor kidney is usually the next best option. If you have diabetes and kidney failure and if you meet other specific criteria, then a kidney and pancreas transplant may be the best option for you.

 

A transplant surgeon talks about the different types of kidney transplants. Patients tell us about their experiences and explain how having a transplant has benefited them.

Supporting you to manage your kidney condition

  • Supporting you to manage your kidney condition – video transcript

    Ros Tibbles, service improvement nurse: Sue, you've told us that you've been a kidney patient for over 40 years now which is absolutely amazing. I'm sure during that time you've experienced a whole range of emotions and I wondered if you could tell us a bit about any coping strategies that you've developed during that time?

    Sue Lyon, kidney patient: I've always tried to see kidney disease as part of my life rather than the whole of my life. When I was on dialysis, for example, I always felt that I dialysed to live and not live to dialyse.

    So it's important to put kidney disease in its place if you like, and think of it as something that you have to deal with but it's not the whole of your life. I also think it's important to be kind to yourself, to try and do things you enjoy, every day if possible. Sometimes there isn't time. That's always been my philosophy.

    Ros: Can I ask you how important has it been for you to take control of your condition and manage it yourself in conjunction with the hospital team?

    Sue: I think it's been absolutely essential really. I'm sure I wouldn't be where I am today if I hadn't.

    I've always felt safe in that knowledge that the kidney team is there to support me if I need it.

    Ros: We have a huge team here in the renal unit, as you know. We have social workers, psychologists, dietitians, pharmacists, physios, occupational therapists, as well as all the doctors and nurses. Can you just tell me a bit about how you feel you've worked in partnership with those people?

    Sue: Well looking back 40 years I do remember having a long chat with the dietitian and talking with her about what I like to eat and what I didn't like to eat and she was able to help me deal with the kidney diet. I know that the pharmacists when I had my transplant were really good at explaining how to take my medication and when. I'm sure I've still got their notes somewhere through all these years. The I've the other thing is I've always known that if I have a question, even if the person doesn't know the answer, they certainly know someone who does and they can find out for me and get back to me.

    Ros: That's great, thanks very much Sue.

    Dr Amy Carroll: Hi, my name is Amy and I work as a clinical psychologist in the renal unit. My role in the team is to support people to manage the psychological impact of living with a long-term condition such as kidney failure.

    It can be really normal to experience a wide range of emotions when you're faced with living with a long-term condition and this can affect how you feel but also your family and carers, and deciding on what treatment you might choose can be challenging.

    Some people might feel low or worried, uncertain about what the future might hold for them, especially if they have to choose a treatment that might change the way that they live their life.

    Pauline: Hello I'm Pauline. I'm a renal social worker at Guy's and St Thomas' Hospital. Part of my role is to empower patients, advise and support them with discharge planning, financial and housing issues. I work closely with social services and together we can assist you to access the support you need.

    This morning I went on the ward and as soon as I saw one of the patients he was saying "Oh thank God you're here" so I think they really appreciate us being here.

    Sue: We hope you found these four films entertaining, informative and helpful, but they really are just an introduction and I'm sure you have lots of questions, so next time you come to the clinic if you want to know anything do ask the kidney team, and there's plenty of written information as well if you'd like to know more.

    And finally, we do have a team of patients who've been trained to act as peer supporters so let your kidney team know if you'd like to speak to one of them.

 

In this film we discuss the importance of taking control of your kidney condition. We also outline the support that is available from the health professionals and expert patients.

About our kidney services

See the individual pages for information on:

Holiday dialysis

For information on requesting holiday dialysis at Guy’s and St Thomas’ dialysis units please visit our holiday dialysis page

Kidney talk

Check out Kidney talk, the newsletter from the Guy's and St Thomas' Kidney Patients' Association.

Related websites

The little book about kidneys

The little book about kidneys.This book will help you talk to young children about your kidneys and the treatments you may be having.

Read The little book about kidneys using our page turning software or download The little book about kidneys (PDF 9.2Mb).

Read our e-book The little book about kidneys (Download and extract, ZIP 1Mb) or EPUB 1.5MB e-book file format.

If you would like a hard copy of the book, please contact Ros Tibbles on ros.tibbles@gstt.nhs.uk.