Your everyday life and some common concerns
You cannot change your diagnosis, but there are many things you can do to adapt to your treatment, and live as normally as possible.
Along this journey, you may find it helpful to talk about how you are feeling and about any uncertainties or fears. Your healthcare team at Diaverum can play an important part in helping you adjust to dialysis and possibly plan for a kidney transplant.
The aim of your treatment is for you to be able to live as normally as possible, coming to see dialysis as a necessary inconvenience but not letting it take over your life. But we also know that the inevitable life changes that come with CKD can be hard to accept and cope with, and that you may find it difficult to discuss your feelings. But do try not to keep things to yourself.
Our clinic staff are very experienced and there are few situations which they have not seen before. Share your concerns with a member of your healthcare team at the clinic, as things will hopefully become easier to understand with more information. Small changes to your treatment may also be possible, which can change your experience and outlook.
Common problems experienced by dialysis patients
Anxiety: This may have a significant impact on your daily life. You may feel anxious about coming for dialysis, unable to predict the future or that you are losing control. Physical symptoms can include a racing heart during dialysis treatment.
Difficulty sleeping: This can be for many reasons, most commonly anxiety. It can also be due to bad habits around bedtime and unhealthy ways of living such as lack of exercise.
Depression: This can range in severity and affect your life in many different ways. It encompasses a group of symptoms including persistent low mood, lack of interest in activities, changes in sleep habits and appetite, lack of concentration and tiredness.
Problems related to sex: Many dialysis patients experience decreased sex drive. This can occur as a physical side effect of kidney failure or may be linked to changes in your body image, depression and anxiety.
Never hesitate to talk to us about issues such as these or other problems that you may have - we will always want to help you. As a first step to help optimise your health during dialysis, we offer advice below on: managing what you eat, what you drink, your medication, living an active life and talking to and seeking support from others.
Managing what you eat
There is no one diet that is best for all patients with CKD at all times, and we encourage you to ask advice from your clinic team. You may feel tired and have a reduced appetite, but it is important to go on eating proper meals and follow a generally healthy diet. There is also some specific advice regarding certain types of food:
Protein helps you maintain muscle and repair tissue. It is important to eat high-quality protein such as that found in meat, fish, poultry and eggs. Good nutrition will help you stay generally healthy and fight infections.
Phosphorus is a mineral found in many foods, and on dialysis you need to be careful not to eat too much of it. Foods like milk and cheese, dried beans, sunflower seeds, linseed, colas, nuts and peanut butter contain lots of phosphorus. If your blood levels get too high this can cause calcium to build up in your tissues and organs, a process called calcification. Phosphorus may make your skin itch and can affect your blood vessels.
Some dialysis patients need to take medication called a phosphate binder to prevent dietary phosphate from getting into their blood.
Potassium is a mineral found in almost all foods, especially some fruit and vegetables. Healthy kidneys keep the right amount of potassium in the blood, but this may not happen in people with CKD: blood potassium levels can vary, and may go up between dialysis sessions. High levels of potassium can affect your heartbeat and it is very important to follow the advice you are given about how best to control your potassium intake. Foods that contain lots of potassium include apricots, bananas, dried fruit, fruit juice, melon, nuts, prune juice, raisins, tomato juice and sauce, artichokes, avocados, dried beans, carrot juice, baked potatoes, chocolate, honey, milk, potato chips, lentils and spinach.
Sodium (Salt) is found naturally in most food and is also used to add flavour. Too much salt in your diet may make you thirsty and lead to fluid accumulation. It is therefore important to keep a careful check on the amount of salt you eat.
Managing what you drink
If you are on dialysis it is very important to control how much you drink, especially if you are not producing urine. Haemodialysis patients usually have to manage their fluid intake more carefully than patients on peritoneal dialysis.
Control your thirst
The best way to reduce your fluid intake is to reduce your thirst, and you can do this in part by controlling how much salt you eat in your diet. Dialysis patients should aim to eat about half as much salt as other people.
Most canned food and ready-made or frozen meals contain large amounts of salt, as do crisps. Try to avoid these, or choose low-sodium products, and do not add salt to food when cooking or eating it.
Control your fluid intake
Any food that is liquid at room temperature contains water, and eating anything of this sort adds to your fluid intake. Such food includes soup, milk, yoghurts, jelly and ice cream. Many fruits and vegetables also contain lots of water, in particular melons, watermelons, grapes, apples, oranges, tomatoes, lettuce and celery. As well as limiting the amount of these foods that you eat, you can also keep your fluid levels down by drinking from smaller cups or glasses.
Managing your fluid levels when on haemodialysis
Fluid can build up in your body between haemodialysis sessions, causing swelling and weight gain. The extra fluid affects your blood pressure and can make your heart work harder. You should aim for a maximum weight gain of 4% of your prescribed “dry weight” (see next paragraph) between treatments.
Your dry weight is your body weight without extra fluid. It is usually the lowest weight tolerated without developing low blood pressure. Your dialysis prescription will define the amount of fluid that needs to be removed during treatment to restore your estimated dry weight. Usually, the prescribed dry weight is a bit lower than the weight of a healthy person without extra fluid.
If too much fluid builds up between sessions (because you drink too much or eat too much food with a high water content) it is harder for the dialysis session to enable you to reach your prescribed dry weight. This increases the risk of dialysis side effects, such as low blood pressure or cramp. Your dry weight may change over time if your lean body weight changes.
Managing your fluid levels when on peritoneal dialysis
Fluid intake is not quite as restricted for those on peritoneal dialysis as for haemodialysis patients, but it is still important to watch for any signs of fluid retention such as swelling or weight gain.
Managing your medication
Many of the medicines that you need when you start dialysis are the same as those you will have been taking before you started treatment. Some drugs will need to be adjusted, and medical supervision will be required. The most common medicines taken by dialysis patients are:
ESAs
Your kidneys are the main source of a hormone called erythropoietin (EPO), which stimulates red blood cell production. In CKD, levels of this hormone may be reduced and this can cause low red blood cell production, which leads to anaemia. Erythropoiesis-stimulating agents (ESAs), which stimulate red blood cell production, can be given intravenously.
Iron
Iron is needed for production of red blood cells and of haemoglobin, which carries oxygen around your body. You may need iron supplements, which will be given intravenously.
Vitamin D
Vitamin D is partially activated by the kidneys, and its production can decrease in CKD. You need vitamin D to help you absorb calcium from your diet and for healthy bones. A shortage of active vitamin D can cause bone disease marked by pain and bone weakness. Active vitamin D can be given orally or intravenously.
Phosphate binders
Phosphate comes from food and is usually excreted by your kidneys. In CKD, phosphate may build up in the body as your kidneys cannot get rid of it as normal. Too much phosphate can form bony deposits in your tissues and cause calcium to build up in your blood vessels. Phosphate binders taken with every meal decrease phosphate absorption in the gut and reduce the amount of phosphate in your blood.
Medication to control blood pressure
As your kidneys are involved in controlling blood pressure, patients with CKD often need medication to control this. High blood pressure is a risk factor for heart disease and requires close control. The good news is that once dialysis starts, these drugs may no longer be needed in the dose they were previously used or may not be needed at all.
Blood thinners (anticoagulants)
If you are on haemodialysis, blood thinners will be given at the start of and during each treatment to avoid blood clotting in the lines and dialyser.
Other medications
People on dialysis may have conditions other than CKD for which medicine is needed. These include for heart disease, for diabetes mellitus, for hyperlipidaemia (an abnormally high level of lipids, especially cholesterol), for depression, for sexual dysfunction or for pain.
Living an active life
As with so many health conditions, keeping a positive mindset can make a really big difference to how you feel, and help you to maintain a good quality of life. Your clinical team at Diaverum will do everything they can to help you enjoy life to the best of your ability.
Continue working or studying
Starting dialysis does not mean that you will have to stop working unless you have an extremely heavy job, and you will be able to continue at school or college. Keeping going in these ways will be a welcome distraction; most employers are understanding and helpful and will make any necessary adjustments so that you can continue to work.
Keep fit
You should always ask your doctor for advice before choosing a specific type of physical activity, but the general rule is to do as much exercise as you comfortably can. This improves your health and well-being.
Keep driving
Most dialysis patients can continue to drive, but you should check with your doctor. During the first two months of haemodialysis, it is advisable not to drive immediately after your treatment. If you drive for your profession, for example as a truck, taxi, train or bus driver, you should discuss with your doctor whether you can continue as usual.
Do not smoke
Smoking is dangerous for everyone, and it is an extra health risk that you must try to avoid if you are on dialysis. If you are considering a kidney transplant, it is even more important not to smoke as it damages your blood vessels and can affect the success of a transplanted kidney.
A little alcohol…
…is permitted, as long as it is matched against your total fluid and diet allowances. Ask your clinical team for advice.
Have a holiday
Everyone should be able to enjoy a holiday, and we help to make this possible for you. Talk to your clinical team for advice about organising your holiday in the best possible way. They can suggest where to go and how to take care of your dialysis while you are away. With more than 400 Diaverum clinics around the world, our d.HOLIDAY programme helps you to travel secure in the knowledge of receiving expert kidney care while you are away from home.
Talking to others about your situation
Everyone reacts differently to their situation, both physically and mentally, but you may feel anxious, stressed, or angry and resentful about what has happened to you and about your treatment. It is really important to find people you can talk to.
The clinic team
The doctors and nurses in your clinic are always there to help you. Ask questions, and discuss your feelings and issues with them. Share your concerns. Often, just having a little bit of extra information can help things fall into place, and make them feel easier to deal with. You may also find it helpful to talk to other dialysis patients, as they have first-hand experience of what you are going through. Do not hide your feelings: there are many people around you willing to listen and to help. By involving them, you will start to create the support that you need for yourself.
Be open about your situation
You may sometimes find it difficult to talk about what you are going through, even, or especially, to those closest to you. But do keep trying. It can be very helpful to encourage your family or close friends to learn more about CKD and your treatment so that they can talk to you about your situation more easily. Everyone will gain from this. It is not only the patient who feels the effects of CKD, and being open with family, relatives, friends and colleagues can make things easier for you all. Knowledge, understanding and encouragement are essential elements that will help you to make the best of your situation.