Norfolk

First Things First

What can you do to help your kidneys and yourself?

What can you do to help your kidneys last as long as possible?

OR

If you have started dialysis - what can you do to keep fit?

"It was ironical that I got so much support during the first 3 days of my treatment, but was offered none when I really needed it.............much later I learned that it was just because nobody was aware that I was in desperate need of support"

A person on dialysis.

If you need to chat to somebody about kidney failure, dialysis or transplantation do not hesitate to call:

Mark Holdsworth (Chronic Kidney Disease (CKD) Nurse) on 01603 288920

or Sarah Brooksby (Renal Counsellor) on 07831 232429.

or Helen Alton (Social worker) on 01603 288026

There are a number of important ways of looking after yourself but the first step is to feel calm enough to start learning.

When you're ready  for this, the points below will help you learn how.

Kidneys keep things balanced in our bodies.  When they don't work you have to ensure that the balance in your body is a good as it can be yourself. We can help you keep this balance with:

1. Dietary advice

2. Medication

3. Renal transplantation or Dialysis (This is Renal Replacement Therapy or RRT for short)

But it is you who will be in control of how you live and how well your body is balanced. You will be the one having to undertake the diets, the drugs and the renal replacement therapy, and how you do it will determine how well they work.

It takes a life-long and daily commitment to do this well, so it needs some mental adjusting and getting used to.

“Complacency is not something that is consistent with or compatible with long survival as a renal failure patient.” (Dr. Friedman, Doc-to-Me® Patient Lecture Series., October, 2000)

But don't be too hard on yourself. It can take about a year on dialysis to give yourself enough time to feel on top of things.

Looking after yourself: You can go through the whole list or go straight to a specific potential problem by clicking the headings on the right.

Clinic appointments If you have Diabetes Blood pressure Medication The taking of drugs Diet (General) Fitness, weight and exercise Blood phosphate levels Blood potassium levels Fluid overload, oedema, water retention, ankle swelling. Salt Smoking Making a fistula Sex and sexuality Having dialysis Not wanting to have dialysis Coping with it all

Problem:	Postponing or missing clinic appointments
Concern:	Doctors can not control your blood pressure, blood sugar (if diabetic), blood count, cholesterol & bone chemistry as well as they might.
Consequence:	This could result in starting dialysis earlier, having more cardiovascular problems (heart and blood vessel problems), and shortening your life expectancy.
What you can do:	Make clinic appointments a priority, turn up.  Click here to download advice (in PDF format) on how to get the most out of your visits to doctors.  BACK TO LIST
Problem:	If you have Diabetes
Concern:	IF you have diabetes it is very important that the blood sugar is controlled.
Consequence:	If not, this could result in starting dialysis earlier, having more cardiovascular problems (heart and blood vessel problems), and shortening your life expectancy.
What you can do:	You will already have been given information about how to keep your blood sugars under control. Contact  your diabetes clinic if you  need more help. Also try making use of : The Diabetes UK website BACK TO LIST
Problem:	Blood pressure readings at clinics
Concern:	Your blood pressure is too high. Possibly inaccurate readings due to stress & anxiety at clinics
Consequence:	You have the risks of high blood pressure which include heart disease, strokes, kidney disease, dementia and eye problems. Inappropriate blood pressure medication prescribed if blood pressure readings are not a true reflection of your blood pressure.
What you can do:	Look after your blood pressure; see following link. Buy a blood pressure monitor and take and record your blood pressure at home. PLEASE NOTE that not all purchasable blood pressure monitors are accurate, and that even an accurate one will give a false reading if not used properly. Click here to find out how to look after your blood pressure, for recommended monitors, how to take blood pressure readings and how to understand blood pressure. Then share these readings with your doctor. This will give a much clearer picture of what is happening to your blood pressure. Read about and understand blood pressure. This knowledge can give you confidence and help you get back in control of your life. Taking blood pressure readings at home make some people even more nervous and so it might not suit them. The web link above explains this as well. Also see booklist at end of page.    BACK TO LIST
Problem:	How you take your drugs
Concern:	Medication will not work if it is taken at the wrong time and in the wrong way.
Consequence:	Doctors can not control your blood pressure, blood sugar (if diabetic), blood count, cholesterol & bone chemistry as well as they might. This could result in starting dialysis earlier, having more cardiovascular problems, and shortening your life expectancy.
What you can do:	Read the label inside the tablet box explaining how and when to take them. Report any side-effects if you feel unwell. There are lots of different alternatives to try if you get side-effects such as dizziness or a persistent cough. Don't just stop taking the drugs without telling the doctors; if they don't know what is going on they can not treat you as well as they could. Understand your drugs. These two links will help http://www.kidney.org.uk/Medical-Info/drugs/index.html http://www.nlm.nih.gov/medlineplus/druginformation.html ...as well as the booklist at the bottom of this page. If you want to talk to somebody about your drugs, contact: Claire O'Dwyer (renal pharmacist) or Catherine Heywood. Tel: 01603-287139 or telephone 01603 –286286 (N&N Hospital switchboard) and ask for the ‘pharmacy helpline’ or contact the renal unit.    BACK TO LIST
Problem:	We don't know what drugs you are actually taking
Concern:	Some drugs you are taking might interact with what the doctors prescribe. This might be harmful to you.
Consequence:	Blood pressure, blood sugar (if diabetic), blood count, cholesterol, bone chemistry are not controlled as well as they might. This could result in starting dialysis earlier, having more cardiovascular problems, and shortening your life expectancy.
What you can do:	Make sure your kidney doctor knows about any supplements or complimentary or alternative medicine you are taking. Be careful of painkillers. Many painkillers can help damage the kidneys especially NSAIDS. Paracetamol at the correct dosage is safe for most people. If you need stronger painkillers discuss this with your doctors before buying them over the counter. Make sure your doctor knows beforehand if you plan to take any supplements or complimentary or alternative medicine. If you just can't get on with some drugs and only take them occasionally instead of all the time, tell the doctor so he knows what actual dosage you're getting. Make sure your GP and your kidney doctor have the same drug list for you. Do this every time you see them. Sometimes a doctor prescribes drugs without the other doctor knowing. Take an up to date list with name of drug, strength of dose, how often you take it, how you take it (e.g. in your mouth or elsewhere), what the drug is for (why you are on it) and when you started the drug. Doctors work by knowledge. If you give them the wrong knowledge or don't give them this knowledge you could get the wrong treatment. You'll get the right treatment when they know what they are dealing with.    BACK TO LIST
Problem:	You don't eat well - perhaps too much, perhaps the wrong stuff.
Concern:	What you eat causes you harm
Consequence:	This could result in starting dialysis earlier, having more cardiovascular problems, and shortening your life expectancy.
What you can do:	Achieve good nutrition: eat a balanced diet. This is important for everybody, but particularly when you have kidney disease. It may also help to slow down the loss of kidney function, keeping you healthier for longer. Tips for eating well: enjoy your food. eat regular meals – do not skip breakfast! eat to be a healthy weight. eat fruit and vegetables every day. base your meals around starchy foods (bread, cereals and potatoes). eat less salt. Do not add salt to food at the table and do not eat too many processed foods. Too much salt will raise your blood pressure. A balanced diet contains a variety of foods from the 5 different food groups. This is important to make sure you get enough energy (calories) and protein from food, as well as essential vitamins and minerals. The 5 food groups are: 1.      Bread, cereals and potatoes. 2.      Fruit and vegetables. 3.      Meat, fish and alternatives. 4.      Milk and dairy foods. 5.      Fatty and sugary foods. Unless a dietitian has put you on a special diet, the advice above is for you. Click here for information from the Norwich renal dietitians. Click here for information on diet from UK Government Health advice.    BACK TO LIST
Problem:	You are unfit and perhaps overweight
Concern:	Your lack of fitness and weight is and will continue to make you unwell (even if you don't feel it)
Consequence:	This could result in starting dialysis earlier, having more cardiovascular problems, and shortening your life expectancy. Being significantly obese means that two out of the three methods of keeping people alive when their kidneys stop working are not available to them. The remaining method becomes more difficult to manage.
What you can do:	Exercise. To find out what 'exercise' means, click here.  Exercise and try to keep your weight down. Doing both of these will help your heart, circulation, lungs, gut, and general well being. Your doctor or nurse will advise you on what is an ideal weight for your height. Being overweight or obese increases the risk of many diseases and health conditions, including the following: Hypertension Dyslipidaemia (for example, high total cholesterol or high levels of triglycerides) Type 2 diabetes Coronary heart disease Stroke Gallbladder disease Osteoarthritis Sleep apnoea and respiratory problems Some cancers (endometrial, breast, and colon) Thinking or believing that you are not obese does not mean you are not obese. Follow this link to understand what obesity is, your body mass index (BMI), and what you can do to get a healthy BMI.    BACK TO LIST
Problem:	Your blood phosphate levels rise because your kidneys are not working well.
Concern:	You have developing renal bone disease which can make you seriously unwell.
Consequence:	Your bones demineralise and your blood vessels get calcified. This can make you unfit for renal transplantation. This can lead to pain. This could result in having more cardiovascular problems and shortening your life expectancy.
What you can do:	Kidneys normally control phosphate levels in the blood. If the kidneys do not work you have to control them by medication and diet. The medication will not work if it is not taken properly - see above. Take an interest in your phosphate levels. Ask us for your blood results or preferably look them up yourself on renal PatientView. If your phosphate is too high a dietitian will talk to you about a low phosphate diet. Understand this diet and where phosphate is found in food.  Realise that the commitment to look after your blood phosphate level is life long and daily. It is difficult at first and you will have the support of the dietitians, pharmacist, nurses and doctors. In time you will become your own expert but we can not do this for you. To understand what your blood results mean follow these links. renal PatientView. know your numbers from the UK national kidney federation Click here for information from the Norwich renal dietitians with a link to information about low phosphate diets. The recommended booklist at the bottom of this page will also help. To contact our Norwich renal dietitians - call: (01603) 287011    BACK TO LIST
Problem:	Your blood potassium levels rise because your kidneys are not working well.
Concern:	Your potassium rises to dangerous heights.
Consequence:	Arrhythmias (irregular heartbeat) Cardiac arrest Changes in nerve and muscle (neuromuscular) control
What you can do:	Kidneys normally control potassium levels in the blood. If the kidneys do not work you have to control them by diet and eventually by dialysis. Medication can be used to control potassium levels in an emergency. Take an interest in your potassium levels. Ask us for your blood results or preferably look them up yourself on renal PatientView.  If your potassium is too high a dietitian will talk to you about a low potassium diet. Understand this diet and where potassium is found in food.  Realise that the commitment to look after your blood potassium level is life long and daily. It is difficult at first and you will have the support of the dietitians, pharmacist, nurses and doctors. In time you will become your own expert but we can not do this for you. To understand what your blood results mean follow these links. renal PatientView.. know your numbers from the UK national kidney federation Click here for information from the Norwich renal dietitians with a link to information about low potassium diets. The recommended booklist at the bottom of this page will also help. To contact our Norwich renal dietitians - call: (01603) 287011    BACK TO LIST
Problem:	Your body gets fluid overloaded (parts of your body swell up with water) as your kidneys work less and less.
Concern:	You start feeling uncomfortable, getting around is more difficult, your breathing becomes difficult.
Consequence:	Over time this can lead to heart failure and could leave you unfit for renal transplantation. This could result in starting dialysis earlier, having more cardiovascular problems, and shortening your life expectancy. Your dialysis sessions will be very difficult for you because a lot of fluid will have to be removed quickly.
What you can do:	Take your water pills correctly - see above about taking drugs. Cut out the salt (see below). Stick to a fluid restriction when you are put on one. (Restricting fluid before you need to could dehydrate you and harm your kidneys.) You will be told when a fluid restriction is going to be beneficial for you.  Fluid restricting is not easy and people have to find their own way to manage this. Speaking to others on dialysis can help. Joining the Norwich support group (see main page) and the following link might help: UK national kidney federation Click here for information from the Norwich renal dietitians.    BACK TO LIST
Problem:	You are taking too much salt.
Concern:	You are not aware of how much salt is already in the foods we eat.
Consequence:	Too high salt intake leads to higher blood pressure. This could result in starting dialysis earlier, having more cardiovascular problems, and shortening your life expectancy. When you need a fluid restriction you will not be able to stick to it because your food has too much salt. Salt demands fluid. Few things are more seriously depressing than battling daily with a fluid restriction you can't keep to. Cut the salt, make it easier.
What you can do:	Don't think because you don't cook with salt or add it at the table that you are doing OK with salt! Most of the salt we eat is already in the food we buy, and a lot of these foods are classed as healthy e.g. all bran and wholemeal bread. After 3 months without salt most people get used to not having it. Follow these links for understanding salt in food. (NB. 6g of salt equals one teaspoonful of salt - our daily max.) Salt reduction (Norfolk renal dietitians) UK guide to salt and health To contact our Norwich renal dietitians - call: (01603) 287011    BACK TO LIST
Problem:	You smoke
Concern:	Smoking harms your kidneys and general health
Consequence:	This could result in starting dialysis earlier, having more cardiovascular problems, and shortening your life expectancy.
What you can do:	Stop. If not cut down. How? Find out more by clicking here. BACK TO LIST
Problem:	One day we have to make a fistula in your arm and this is not easy.
Concern:	You do not end up with a good fistula (that means a good life line).
Consequence:	A fistula is a life line. A poor one means you get less efficient dialysis. If we can't use your fistula you will need a haemodialysis neck line. These lines carry a serious infection risk with the likelihood of more hospitalisation and use of antibiotics.
What you can do:	Lose weight if you are overweight. Making and using a fistula is much more difficult if your arms have a lot of fat on them. Eat healthy food and  exercise; this also helps blood vessel quality. Preserve your veins. This means do not let anybody put a needle in the veins that will be used for a fistula one day. Each time needles are put in veins they slightly damage them. This makes creating a fistula out of them more difficult. All blood taking therefore to be taken from the back of the hands. All drug giving via needles into blood vessels to be given in veins on the back of the hands. If the back of your hands are no good for needling, offer the veins where the arm bends on the dominant arm (e.g. if you're right handed have blood taken from the right arm and we will try and make the fistula in the left arm). This is a last resort. The goal is  to preserve both arms. This is because fistulas do not always last a long time, and the surgeons might have to make another one on the other arm at a later date. If you are in hospital and somebody wants to put on one of those plastic needles (a cannula) in you for intravenous drugs, again have it in the back of one of your hands. If this is not possible then have it put in the dominant arm. Make sure these cannulae are taken out as soon as possible. They damage veins! Blood pressure to be taken on the arm that we are not planning to make a fistula in. Follow these two links for more understanding about vein preservation and its importance. Fistula first  this is an American site so it describes a different health system - but a fistula is a fistula in any country. The vascular access society this site is not written for patients but it is readable and tells you what the vascular surgeons have to say on the matter. Go to the guidelines section and then choose the  title "4. Role of nurses and staff in access management".    BACK TO LIST
Problem:	Sex and sexuality
Concern:	You are unaware how kidney failure affects you sexually
Consequence:	You might try for a baby at the wrong time. You might miss out on help with this when you could have got help.
What you can do:	Read what is said at these three links (for men & women) from the national kidney federation UK from the national kidney federation USA (see the menu on the left when you get to this page) BACK TO LIST
Problem:	Your kidneys stop working and you need dialysis and/or renal transplantation.
Concern:	You do not get the best out of dialysis or renal transplantation.
Consequence:	Your life on renal replacement therapy is less rewarding and more difficult to cope with.
What you can do:	Understand dialysis and your access (the fistula or peritoneal catheter). Dialysis can be adequate or inadequate. It can be measured to see if it is doing enough for you. Understand what makes dialysis work well. The booklist below will help and you can ask the renal unit staff. Your dialysis, drugs and diets are all there to help you balance the chemicals in your body. Understand you drugs, your diets and your blood. Links to this information are found above. Understanding how these things work will enable you to look after yourself and will give you confidence and control over your treatment and your life.    BACK TO LIST
Problem:	Your kidneys are failing but you are frail or elderly or have other serious medical problems and you don't think dialysis will help you.
Concern:	You are started on a demanding treatment that might not make you live significantly longer or make you feel better and you do not want it.
Consequence:	Control over your life is taken away from you in the last few years or months of your life and you are not left to die in peace. Dialysis will not work for or suit everybody. Sometimes it can be hard for family and health workers to accept that some people are ready to die and they unintentionally push them into treatment that won't really help or is not really wanted.
What you can do:	A lot of people get established renal failure when they are old and a lot of these people choose not to have dialysis. Be sure to discover what you really want to do. This decision might not be difficult, but for some it can be. If you need support with your feelings, thoughts and choices you can ring Sarah Brooksby, our Renal Counsellor for the Norwich Hospitals on her mobile 07831 232429  from Monday to Friday, 9 till 5. To understand why dialysis does not suit everybody and what not having it means, follow these links: Choosing to have treatment without dialysis. (from the Edinburgh Renal Unit) "Choosing not to start dialysis". From Kidney Research UK. When you get to this page, scroll down to the fact sheet with this heading to download it (pdf file). "Conservative management: What I tell my patients about conservative management of their established renal failure". This links to a recommended list of titles. Scrolling down the list will reveal this one.    BACK TO LIST
Problem:	There is too much information to understand and to take on board.
Concern:	You feel helpless and overwhelmed
Consequence:	You do not look after yourself as well as you might
What you can do:	Don't worry. There is a lot of information and it might take a few years to feel on top of things. But this will come. Keep interested and learn and adapt as you can. The renal team will support you any way we can. Follow this link about coping with it all. BACK TO LIST
Encourage members of your family to have their blood pressure checked. If high blood pressure is controlled early on it could prevent somebody else needing to start dialysis!
Mark Holdsworth 2009

RECOMMENDED BOOK LIST CLICK HERE