Renal - Understanding my options for kidney treatment

This leaflet is to help explain the different treatment options when your kidney function is dropping below 15% (Chronic kidney disease CKD stage 5).

However, it is not always easy to determine when your kidney function may drop to 15% or below and it may drop quicker than expected, so it is often useful to consider the different ways of treating this stage of kidney function before it occurs.

Also, it may take some time for you to learn, understand and feel able to make the right decision for you, so it is also helpful to do this well before the treatments may be expected.

You may have different treatment choices dependent on the level of your kidney function (estimated Glomerular function rate eGFR) or how you are feeling.

You could have lots of questions to ask, you may want to talk things over with family or friends.

You may have other important factors to consider such as your home situation, your religious or own beliefs that will influence your decisions and how you wish to be cared for. What you do should depend on what matters to you. Please discuss with us any concerns or things that are important to you in making these decisions.

What treatments are available?

There are different ways to manage advanced kidney disease (CKD stage 5 and below), these are:

• Kidney transplant
• Kidney dialysis
• Conservative or supportive care

When would these treatments be needed?

• This can depend on the treatment option or options that you decide to have

For example, a kidney transplant is beneficial before dialysis starts and you could go on the transplant list when your kidney function is 15% or below. You would need some tests and investigations to see if you are suitable for a transplant

• If you wish to consider a kidney and pancreas transplant, you could go on the transplant list when your kidney function is 25% or below
• Dialysis may start when the kidney function is somewhere below 10% (on average) and dependent on how you are feeling, the symptoms you are experiencing and your blood results
• Conservative or supportive care is where you may decide NOT to have dialysis or transplant and decide to use medication or diet restrictions to manage any symptoms you have.

Changes would be made based on how you feel and your blood results. You may continue to come to clinic or be cared for by your GP and community teams as well.

When do I need to decide?

• It is important you make the right decision for you and your family. To make your decision you may need some more information
• We are all very different and you may want to know more information earlier or later. We will try to give you the information you want and need, so you can make the best choices for you
• If you choose to have dialysis and/or a kidney transplant, you may need to have tests/investigations or operations to make sure you a ready for the treatment when you need it
• It is helpful to make decisions as soon as you are ready, so that all is done to ensure you are ready for the treatment when needed. This may help you understand how and when you may need to make your decision

Kidney transplant

What is a kidney transplant?

• A kidney transplant involves an operation whereby a healthy kidney from one person (donor) is placed into another person’s abdomen whose own kidneys are not working well enough (recipient)
• Not all patients are suitable to have a kidney transplant, so you would need to have some tests and investigations first to see if you are suitable. Sometimes, patients decide not to have a kidney transplant
• A kidney can come from a live donor or a deceased donor

Benefits of a successful kidney transplant

• Better quality of life, you may feel better
• You may live longer
• You will not need dialysis
• You can continue to work with little adjustment to your work pattern/study college or university
• You may not have any dietary or fluid restrictions

Risks and disadvantages

• You will need to take long term special medication to stop your kidney from being rejected (immunosuppression)
• Immunosuppressive medications have side effects that can cause some complications and you may be more at risk of developing infections, heart problems and diabetes in the future
• You will need to continue to attend clinic for regular check ups
• Your kidney may not work effectively (rejection)
• There are some possible complications of the operation such as bleeding, early rejection and infection

If you wish to know more about kidney transplant or check if you are suitable, then please ask a member of your health care team. You will be given more detailed information which is in a separate leaflet.

Kidney dialysis

What is kidney dialysis?

Dialysis is a treatment that cleans your blood (filters) by removing waste products (toxins) and excess fluid from the body.

These waste products and excess fluid build-up because your kidneys are not working properly.

Dialysis can be done in 2 ways - Peritoneal dialysis and Haemodialysis.

Dialysis can be done at home or at a dialysis unit.

Peritoneal dialysis is:

• A home treatment where you, your family or a carer can be trained to do the treatment, (the training is normally done in your own home)
• The blood is cleaned inside the body, using the peritoneal cavity. The peritoneum is a thin membrane that surrounds the outside of the organs in the abdomen
• A tube is permanently placed into the peritoneal cavity
• Special fluid is drained into the cavity and left for some time where it absorbs the waste products and extra fluid from the blood
• This fluid is then drained out and new “clean “fluid is drained back in to start the process again
• Peritoneal dialysis can be done throughout the day or overnight
• If you would like more information - please ask your health care team if there is a more detailed information leaflet available

Haemodialysis is:

• A treatment that can be done at home or in a dialysis unit
• You can be trained in a dialysis unit to do this treatment at home or using our “self-care” unit
• Blood is removed from your body and pumped around a haemodialysis machine, through an artificial filter, which cleans the blood and removes excess fluid
• This treatment can be done 3 times a week, for 4 hours each time
• If the treatment is done at home or in the “self-care unit” it can be done more flexibly with different length of treatment and times
• You would need a permanent way to remove your blood from your body either through a fistula or a dialysis catheter
• A fistula is a more effective way to remove the blood for haemodialysis
• A fistula is where 2 of your blood vessels in your arm are joined together to make a strong and wider vein (blood vessel), so that you can have haemodialysis

Benefits of dialysis

• Dialysis will remove the waste products and extra fluid that may be making you feel unwell
• It can be flexible, done at home or at hospital
• You can change from one treatment to another if it doesn’t work or you are not happy with the treatment
• You can continue to work around your dialysis treatment
• Holidays can be arranged with both types of dialysis - discuss this with your kidney care team
• You can be on dialysis for many years
• You can get support from other patients/relatives

Risks and disadvantages of dialysis

• It does not do all the jobs that the kidneys should do
• You will still need to take important medication
• It may affect your lifestyle and work, depending on what you do
• It may not work well for you dependant on your overall health
• You will need to attend clinic/hospital for treatment or check ups

Conservative/Supportive management

• Conservative or supportive care is the term used to describe the care received by people who do not want to have dialysis or transplant
• This means that you would continue to have support from the kidney care team, your GP, district nursing teams and any other health care teams as you need
• For some people dialysis or transplant may not improve the quality of their life significantly. This can often be due to other serious health problems as well as kidney failure
• You do not have to have dialysis or a transplant if you do not want to
• You can decide not to have dialysis or transplant ever, even if your kidney function continues to get worse
• The symptoms of your kidney disease or kidney failure would be managed with medications and dietary alteration
• If your kidney function gets worse, not having dialysis or a transplant may lead to end of life at some point in time
• Sometimes people wish to stop dialysis permanently, either because they are too unwell to have any more treatment, or they no longer feel they want to continue with the treatment.

Again, you would be supported by your GP and any health care teams you need, as this would lead to end of life at some point after dialysis is stopped.

What to do now?

• Ask your health care team for any further information about any of the things discussed in this leaflet
• Visit Patient Education room in the Advanced Kidney Care Clinic
  -  See dialysis equipment
  -  Gain more information on Renal Therapies Replacement (RRTS)
• It may help you to talk to your family, friends, or others about these decisions
• Sometimes it helps to write questions or things that you want to discuss with your health care team at your next appointment

You can contact the CKD team for more information or advice between your appointments on 0161 206 1882.