Chronic kidney disease

Chronic kidney disease is usually only noticeable ounce it has already reached an advanced stage. Then the body can’t get rid of enough fluids, and metabolic waste products slowly build up. This causes noticeable symptoms. The symptoms can affect most of the body, including:

• Swelling (edema), for example in the legs or face
• Nausea, vomiting, diarrhea
• Loss of appetite, weight loss
• Pale skin and itching
• Tiredness, listlessness, physical weakness
• Breathing problems
• Difficulties concentrating, confusion, problems with consciousness or even loss of consciousness
• Muscle paralysis, muscle cramps

The most common causes of chronic kidney disease are diabetes and high blood pressure.

The kidneys can also become permanently damaged if

• the kidney tissue become inflamed,
• certain medications, especially painkillers, are taken over a longer period,
• kidney stones, tumors or scar tissue blocks the flow of urine, or
• you have had kidney disease from birth (congenital), such as polycystic kidney disease.

About nine million people in Germany have chronic kidney disease. Most of those affected are over the age of 60.

Experts assume that about 100,000 people have kidney disease that is so advances that they need to have dialysis, and that this number will increase in the coming years. And about 2,000 donor kidneys are transplanted per year.

Nearly 27,000 people die from complications of chronic kidney disease each year in Germany.

In the early stages, the kidneys can still clean enough blood although they aren’t functioning properly. That is why there are usually no noticeable symptoms in the early stages. This state can last for years, and in rare cases the kidneys even get better again. But often the kidneys get increasingly worse over time, resulting in severe kidney failure.

Sometimes the kidneys stop working altogether over time. Kidney failure is life-threatening because e.g. fluid retention can make it more difficult to breathe.

The kidneys are involved in many different bodily processes. Various problems can arise if they are not working properly:

People with chronic kidney disease have a much greater risk of cardiovascular diseases such as strokes or heart attacks. This risk is especially high if you also have high blood pressure. High blood pressure is often the cause of kidney disease, but it can also be the result.

The kidneys are responsible for cleaning the blood, and also play a role in the production of new blood cells. That means that damaged kidneys can cause anemia.

The kidneys also regulate our bone metabolism. If they are no longer able to work properly, bone tissue may be damaged.

If the kidneys fail completely, the waste products in the body build up so much that it becomes “poisoned from inside.” The medical term for this is uremia. Uremia causes changes in the skin, itching, physical weakness, weight loss and depression. It also upsets the balance of fluids and electrolytes in the body, causing acid to build up (acidosis). That can lead to drowsiness and even loss of consciousness. Life-threatening effects of uremia include pulmonary edema and heart problems.

Doctors may think that your kidneys are no longer working properly on the basis of certain symptoms or the results of medical check-ups, such as those for diabetes. A detailed discussion with your doctor is needed to diagnose chronic kidney disease, along with the following tests:

• Physical examination including measurement of blood pressure
• Blood tests
• Urine tests
• Ultrasound examination of the abdomen (belly) and kidneys

These tests can also help to determine the exact stage of the disease, and to check later on whether the kidneys are getting worse or whether complications have already arisen.

Tests are also carried out to find the cause of the kidney disease: Blood tests can be used to check whether you have diabetes, for instance. Other tests such as the analysis of kidney tissue sample (biopsy) are also an option.

People who have diabetes or high blood pressure are at greater risk of developing chronic kidney disease. It is a good idea to have their kidneys checked regularly by their family doctor. That way, kidney failure can be diagnosed early on. Because the sooner it is detected, the more that can be done to stop the disease from progressing.

In Germany, healthy adults with public health insurance are also eligible for a free screening once before the age of 35 and then every three years after that. The screening includes blood and urine testing (in German this is called "Gesundheits-Check-up" or "Check-Up-35"). It is used to detect cardiovascular (heart and blood vessel) disease and diabetes early on, among other things. It is also possible to detect chronic kidney disease if it is causing increased excretion of protein in the urine.

You can lower your risk of high blood pressure and diabetes by getting enough exercise, eating healthy, not smoking and avoiding being overweight as much as possible. That also lowers your risk of chronic kidney disease and other complications.

If you already have diabetes or high blood pressure, you often need to start taking additional medications. That helps to regulate the blood sugar levels and your blood pressure in order to prevent possible complications like chronic kidney disease.

If your kidneys are mostly working normally, the treatment is intended to stop the disease from getting worse and to prevent complications like cardiovascular disease. This is mainly done using medication to lower blood pressure levels and drugs called SGLT2 inhibitors. Cholesterol-lowering medications may also be a good idea. If you have diabetes, it's important to regulate your blood sugar levels.

If kidney disease has already caused anemia or bone metabolism disorders, then more medications are used – such as medicines that contain iron or stimulate the production of blood, as well as medications called “phosphate binders.” Diuretics (“water pills”) may be needed as well. Bicarbonate is used if acidosis (a build-up of acid) has developed. It is also important to adjust your diet to your stage of kidney disease, as well as drinking the right amount of fluids, getting regular exercise and not smoking.

Renal (kidney) replacement therapy is needed if the kidneys almost stop working altogether:

• Kidney transplant: A healthy donor kidney is implanted to enable a long life without any restrictions. The kidney can be taken from a recently deceased person. But a living donor transplant is also possible. Then a family member, for example, donates one of their two kidneys and lives with only one kidney, which then takes over the complete functioning – just like the donated kidney in the person receiving the donation. The right donor needs to be found for the transplant, though. That can take a long time, but it can go faster with a living donor transplant.
• Dialysis: Dialysis also makes it possible to live for many years with advanced kidney disease. Your blood is cleaned daily or several times per week. There are two different methods: peritoneal dialysis and hemodialysis.

It is often helpful to also get advice on living a healthy lifestyle or to find psychosocial support or see a psychotherapist.

Only very rarely is it not possible to have dialysis or to get a kidney transplant. Some people make a conscious decision not to do either, accepting the fact that they could die soon afterwards. They can continue the therapy with medication, and then depending on the circumstances they may live for another few weeks or months. Towards the end of the person's life, palliative treatment can reduce pain and other symptoms in order to maintain as much quality of life as much as possible.

The two types of dialysis, peritoneal dialysis and hemodialysis, make it possible to live with this condition for many years. Experts consider them to be equally effective. How long you live and what your quality of life will be like instead depend on

• whether you also have other health problems,
• whether the dialysis therapy was well planned, and
• how well it works to handle the treatment, the medication you need and the dietary restrictions.

So it is important to find a dialysis method that best suits your own situation. That is easier if you are well informed about both of them. A decision aid that compares the advantages and disadvantages can help you to weigh your options. For instance, you can go though it together with your doctor and discuss any questions that you still have.

Chronic kidney disease has an impact on everyday life. You should make changes to your eating and drinking habits, for example. That is why you and your family can also get nutritional counseling as part of the treatment.

It is usually important to avoid drinking too much, especially during dialysis. As soon as your kidneys aren't able to flush out enough water, you can develop fluid retention. If you feel thirsty, sour candies, lemon slices or sugar-free gum can help.

People with chronic kidney disease often have to manage taking several different medications over a longer period of time. A medication schedule that has an easy-to-read list of what needs to be taken, and when it needs to be taken, can help. Having weak kidneys mean that some types of medication can’t be used: Instead of taking NSAIDs like ibuprofen, you will need to talk to your doctor about alternatives. It may be necessary to get used to entirely new treatments.

Dialysis has an especially large impact on everyday life. It takes a lot of time, which can affect your life at home and at work. It can be distressing to have the feeling that you will be dependent on the therapy for the rest of your life. This can also lead to depression. Many people find it helpful to talk with others who have the same condition – for instance, in a support group. You could also seek psychological treatment if you are finding it hard to cope with emotionally.

When people are ill or need medical advice, they usually go to see their family doctor first. Information about health care in Germany can help you to navigate the German health care system and find a suitable doctor. You can use this list of questions to prepare for your appointment.

Doctors called nephrologists are responsible for kidney diseases. The Federal Kidney Association website has a lot of information and events listings related to the topic of kidney disease, and also provides the contact details and addresses of support groups all across Germany.

The Germany Society of Nephrology has compiled information on renal replacement therapies on their website “Nieren Navi” (in German).

Germany’s Federal Centre for Health Education (“Bundeszentrale für gesundheitliche Aufklärung,” or BZgA) has also compiled detailed information (in German) about kidney transplants on the website www.organspende-info.de.