Dealing with your diagnosis
If you have just found out that you have chronic kidney disease (CKD) you may be experiencing a range of emotions. You may be feeling shocked and worried about how your life might change – and possibly angry too. You could be feeling positive and eager to start treatments.
Reactions will vary depending on your personal circumstances, the severity of your illness at diagnosis and the treatment options available to you – and they’ll probably change from day to day, depending on how you are feeling; this is all perfectly normal. But, rest assured, you won’t have to face kidney disease alone.
Your level of kidney disease
Chronic kidney disease is a long-term health problem where kidney (renal) function reduces slowly over time – often without any noticeable symptoms. That’s why some people only discover that they have CKD when the disease is quite advanced.
There are several stages of CKD, ranging from mild loss of kidney function to complete kidney failure, but not all CKD conditions progress to the most serious stage.
Mild to moderate CKD
Most people fall into the mild to moderate categories of CKD. If you have been told that you have mild to moderate CKD you’ll probably be:
- monitored regularly (through blood and urine tests) to check your kidney function
- given advice about staying as healthy as possible (e.g. by doing regular exercise and eating a healthy diet)
- offered cholesterol-lowering treatment (usually with statins) depending on your overall risk of cardiovascular disease
- offered treatments if you develop conditions like high blood pressure, anaemia or bone disease.
Most people with mild to moderate CKD will never get kidney failure, although they are at increased risk of other conditions such as cardiovascular disease, and are more prone to get acute kidney injury (AKI) during another illness.
"The level of emotion I have experienced on my kidney failure journey is incredible. It has encompassed everything, from fear and excitement to hope and despair."
If your kidney disease looks like it’s getting worse you may be advised to start thinking about possible treatments should your kidneys eventually fail. These treatments (e.g. peritoneal dialysis, haemodialysis and kidney transplantation) are known as renal replacement therapies because they do some of the work of the kidneys. Some patients opt not to have renal replacement therapy and instead receive active supportive care.
Some may fit in with your lifestyle better than others and many people will have one or more of these treatments.
It can be daunting to consider such major decisions but your kidney doctor or nurse will be on hand to explain everything and help you to plan.
Sudden kidney illness
Some people may have no time to plan for potential kidney failure. Their CKD may be so advanced at diagnosis that they have already lost most of their kidney function and need urgent dialysis treatment. This news can be devastating.
People can feel extremely anxious about how the disease will affect their lives, and the lives of their loved ones. They may also be worried about work commitments and finances in general.
If you have just discovered that you need to go onto dialysis, talk to your kidney doctor or nurse about any concerns you may have. They will be able to explain the treatments available to you. They may also be able to put you in touch with other professionals, such as counsellors and social workers, who can help you with your mental wellbeing and give you information about benefits and other financial advice.
Become your own expert
Kidney disease can have a major impact on your life but it doesn’t have to define who you are. You can still take control of your life.
For many people, taking control means becoming an expert on managing your kidney disease by:
- Developing a clear understanding of your illness and medical history
- Understanding why medical tests are done and what the results mean
- Ensuring you are eating a well-balanced, healthy diet – especially if you have been advised to restrict your diet by a specially-trained renal dietitian
You can find more ways to take control of your kidney disease (including hints and tips on exercise, mental wellbeing and seeking out support from other kidney patients) in our How can I help myself section.
Dealing with diagnosis of kidney disease
A booklet from Kidney Care UK.
Dialysis Decision Aid booklet
Information on the treatments available for kidney failure.