Kidney treatment options in Hunter New England LHD

Your nephrologist asked you to join our Kidney Treatment Options Pathway based on review of your kidney function.  They are looking at the chance your kidney function will drop to a level where you need to think about medical treatment.

Early referral to the Kidney Treatment Options Pathway is shown to support people in making informed treatment choices.

Sometimes people are referred while they are feeling well which can feel confusing. We do this to allow enough time for you to attend education, speak to friends and family and to come to a decision about your future health.

The kidney treatment options education pathway has lots of communication between you and your treating medical team.

The Kidney Treatment Options coordinators are registered nurses in the Nephrology Unit of John Hunter Hospital. We work with you to inform you about treatment options. The Kidney Treatment Options coordinators work between your nephrologist and your health care team.

A long period of time can pass between being referred for education and having to make any definite plans for treatment. The pathway is there to ensure that you are kept informed about your treatment options as time goes on.

The referral from your kidney specialist to the Kidney Treatment Options Pathway is a starting point for you to think about the different treatment options.  The main question is which treatment option would work best for you and your family.  Being actively involved in decisions about your treatment is welcomed by your kidney team.

The three treatment options for kidney failure are:

• Kidney dialysis (haemodialysis and peritoneal dialysis)
• Kidney transplantation
• Supportive care (without dialysis).

Your kidney team, along with your GP, will give you the information and support you need to help you make the best decision for your situation.  It is important to remember that your decisions can change over time and changes in your health can affect you. 

Dialysis is a medical treatment used for kidney failure. It removes waste products and extra fluid from the blood.

There are 2 main types of dialysis: peritoneal dialysis (PD), done at home, and haemodialysis (HD), which can be done at home or in a renal unit.

Dialysis options include home dialysis (either peritoneal dialysis or home haemodialysis) and centre-based haemodialysis, which takes place in a satellite or hospital dialysis unit.

Haemodialysis

In haemodialysis, your blood is pumped through special tubing to a haemodialysis machine, which works like an artificial kidney. It filters waste products and extra fluid from your blood before returning it to your body. A special filter called a 'dialyser' is used during this process.

Peritoneal dialysis

Peritoneal dialysis is a treatment where dialysis fluid is moved in and out of the peritoneal cavity in your abdomen to clean your blood. This is usually done 3 or 4 times a day. It can also be done at night using a special machine called a cycler. The dialysis takes place inside the body, using the natural lining of the abdomen as the membrane. PD is usually done at home, either by the patient or a carer.

Is one better than the other?

PD and HD work in similar ways by filtering blood through a thin membrane called the dialysis membrane. Excess waste and fluid pass into a liquid called dialysis fluid, which is then removed from the body. Both methods effectively remove waste and fluid from the blood.

Your choice of treatment may depend on other health conditions. Unless a medical condition makes one unsuitable, both PD and HD are effective long-term treatments for kidney failure.

Your Kidney Treatment Options coordinator will talk with you frequently to help you manage your kidney disease as best as you can. You begin our education pathway after being referred by your nephrologist to one of the coordinators.

The coordinators will be your ‘case manager’ and are there to provide the following assistance:

• provide education on treatment options
• ensure you are referred to members of the health care team when required
• act as a point of contact for you and assist with any questions you may have
• contact you on a regular basis to check how you are going
• arrange for screening for Hepatitis B and vaccination if needed.

We have close links with the Transplant Team at John Hunter Hospital and the Renal Supportive Care Team. We can help guide appropriate contact with these teams.

There are a number of people that will be involved in your care while you are on the Renal Options Pathway.

Nephrologist

Your Nephrologist or kidney doctor is your coordinating doctor.  They will liaise with your GP, surgeons, radiology doctors and other healthcare teams at the John Hunter Hospital.  Your nephrologist is the main source of referrals to different members of your treating team.

Occupational Therapy

If you want to do home dialysis you may be asked to see the occupational therapist. The occupational therapist will assess how you are able to attend daily tasks. They may help make a plan to help you with dialysis training.

Areas that we may talk about are:

• your life roles and values
• physical skills such as walking, lifting and balance
• hearing
• eyesight
• your ability to read & follow instructions
• pain
• memory
• your ability to grasp and control objects with your hands.

Social work

The social work department has social workers who are responsible for speaking with people as they come through the education pathway. Issues that may arise are looking at treatment options from a social perspective, effects on family and work life, quality of life and lifestyle changes due to renal disease, family structures and work history, transport, accommodation and financial pressures.

Social workers offer counselling and support to patients and their partners, carers, family and friends. They can act as patient advocates, particularly with your treating medical team, Government agencies and community organisations.

Social work input can be arranged when required by contacting your Kidney Treatment Options Coordinator and asking for a referral to a kidney social worker.

Dietitian

There are kidney dietitians based at John Hunter Hospital and at Wansey Dialysis Unit. They are responsible for providing nutritional assessment, education and ongoing support. This is done by providing outpatient clinics, education, assessments and other consultations.

The dietitian will assess your current diet, any symptoms you are experiencing and find out how well-nourished you are. You might need to make changes to your food habits depending on the level of your kidney failure, symptoms and current intake.

The dietitian will speak to your Nephrologist when necessary to ensure that you are eating well. Dietary changes can often help maintain kidney function or manage symptoms; the dietitian will work with you to ensure that you get the most benefit from any changes to what you are eating.

You will need regular reviews and changes might happen depending on your blood tests and kidney function.

Home therapies nurses

If you are thinking of doing a home therapy such as peritoneal dialysis or home haemodialysis you will attend a clinic appointment with one of the nurses from the Home Therapies Unit.

This appointment is designed to introduce you to the home therapies team, for you to receive information and be able to ask questions specific to home dialysis therapies. At this appointment the nurse will attend some assessments which help to plan and personalise your dialysis training.

Kidney supportive care

The kidney supportive care team is part of the Renal Unit of John Hunter Hospital.

We provide a service alongside your usual care by your nephrologist and GP. We aim to help improve your quality of life and reduce your symptom burden.

You can access this service if you are:

• on dialysis but are having symptoms
• choosing not to have dialysis
• thinking of stopping your dialysis treatment.

The team consists of:

• palliative care specialist doctor
• clinical nurse consultant
• social worker
• kidney dietitian.

You can access the service after speaking to your GP, nephrologist or Kidney Treatment Options Coordinator.

You will need a GP referral to the kidney supportive care doctor.

Surgeons

Surgeons working with the kidney team can meet you to discuss your choices for dialysis access surgery.  This referral to see a surgeon is made by your nephrologist.

When you are referred onto the pathway by your nephrologist, the referral will include an appointment with a renal dietitian.  This can be done through the public health system at John Hunter Hospital or via virtual care (telehealth).  Private clinics are also available through Hunter Kidney Clinic at Gateshead.

The next step is the Kidney Treatment Options Education seminar.  If you are already on dialysis, it is important that you still attend this session.

The seminar is a great chance for you and your family or friends to gain more information, ask questions and meet other people in a similar situation.  The education seminar is run second monthly at a local club, Club Charlestown.

We have speakers from the renal unit, the renal pharmacist, home training nurses, dietitian and social worker.  It is good chance to meet members of your renal team and others who are facing similar decisions about their treatment options.

After attending the seminar, you and your family or friends will be invited back for a planning clinic at the Wansey Centre, Charlestown.

You meet a Kidney Treatment Options Coordinator to talk about your plans and make referrals to other members of the health care team if required. You will also speak with our Renal Social Worker.

The Planning Clinic allows time to discuss treatment options your Kidney Doctor may have talked with you about in clinic appointments.

After discussing your treatment options, you can meet with members of our Home Training Team.  This clinic will give you more time to speak about home dialysis to help your decisions about treatment.

The Nephrology Unit based in Newcastle has 9 nephrologists who can refer their patients to the Kidney Treatment Options Pathway. There are about 250 people on the Kidney Treatment Options Pathway with different stages of kidney function.

We cover a large geographical area. We have patients from the border of the Central Coast, up to as far as Aberdeen and Scone in the Upper Hunter and the north as far as Buladelah.

Other areas such as Tamworth, Armidale, and Taree have renal options coordinators working in their Renal Units and provide education pathways similar to our Kidney Treatment Options Pathway in Newcastle. Contact details for the renal options coordinators in these areas are below:

Your nephrologist has referred you to join our Kidney Transplantation Pathway.

The transplant team communicates between you, and your treating medical team.

The transplant recipient coordinators are located in the Nephrology or Transplant Unit of John Hunter Hospital. We work with you to inform you about transplant options.

Your transplant recipient coordinator will talk to you often to keep you informed whilst you are on the pathway to kidney transplant and post-transplant.

Kidney transplantation is a procedure that places one healthy kidney from another person into your body to take over the work of your 2 failed kidneys.  It is inserted into your lower abdomen and connected to an artery and vein in your pelvis. Your blood flows through the new kidney, which makes urine and removes harmful waste products, just like your own kidneys did when they were healthy. Your own kidneys are usually left in place.

You will initially require an assessment to determine whether your body will accept an available kidney. This may require several visits over 4 to 6 months. You must be healthy enough for surgery.

If a family member or friend wants to donate a kidney, they'll need to be evaluated separately for compatibility, general health and counselling. Matching the kidney to your immune system is less important for living transplants.

If you don't have a living donor, you will be registered with the national waiting list to receive a kidney from a deceased donor. The average wait in Australia is three years, but it varies considerably.

If you have a living donor, the operation is scheduled in advance at a time that suits you both.

If you're on a waiting list for a deceased donor kidney, as soon as a kidney becomes available you must go to the hospital quickly. You will have to undergo some tests to ensure the transplant can go ahead. The operation usually takes 3 to 4 hours. Often the new kidney will start making urine as soon as your blood starts flowing through it, but you may need dialysis if this is delayed.

To prevent your immune system from seeing your new kidney as foreign and rejecting it, you need to take drugs that suppress your immune response. Be sure that you understand the instructions for taking your medicines before you leave the hospital.

You will have regular appointments with the transplant team once you are discharged from hospital. It is very important to attend.

Any person considering kidney transplant must attend the education seminar.

The seminar is a great chance for you and your family or friends to gain more information, ask questions and meet other people in a similar situation.

It is good opportunity to meet the members of your transplant team, face to face.

Seminars are held at:

John Hunter Hospital – Transplant Education Seminar is offered 4 times per year, held at John Hunter Hospital.

Tamworth - Transplant Education Seminar is offered 4 times per year, held at Tamworth Rural Referral Hospital.

Invitation dates to attend the seminar will be provided to you by your transplant recipient coordinator.

This clinic will give you more time to explore if kidney transplantation is the right option for you.

Clinics are held at:

John Hunter Hospital -Transplant assessment clinic is on a Tuesday morning, in the south block of Royal Newcastle Centre on site at the John Hunter Hospital.

Tamworth- Transplant assessment clinic is on a Wednesday, 4 times per year held at Tamworth Outpatients Clinic, Tamworth Rural Referral Hospital.

Invitation dates to attend clinics will be provided to you by your transplant recipient coordinator.

Your transplant coordinator will talk with you to help you manage your kidney disease as best as you can. You begin our education pathway after being referred by your nephrologist to one of the coordinators.

A donated kidney may come from someone who died and donated a healthy kidney, called a deceased donor. Donated kidneys also can come from a living donor. This person may be a blood relative (like a brother or sister) or non-blood relative (like a husband or wife). They can also come from a friend or even a stranger.

Rejection is one of the most important complications that may occur after receiving a transplant. Since you were not born with your transplanted kidney, your body will think the new kidney is “foreign” and will try to protect you by “attacking” it.

Increased risk of infection due to the immunosuppressant medications.

During the early stages after a transplant, while you're on higher doses of immunosuppressant medicine, you should avoid eating foods that carry a high risk of food poisoning, including unpasteurised cheese, milk or yoghurt. Foods containing raw eggs (such as mayonnaise) undercooked or raw meats, fish and shellfish.

The new kidney is placed in the lower abdomen and groin area and not in the natural place for your kidneys. Removing the old kidneys can be risky and is not required unless there is uncontrolled infection, high blood pressure, or the kidneys are markedly enlarged such as with polycystic kidney disease (PKD).

Once you're home from the hospital, the most important part of your recovery begins – the follow-up. To ensure your transplant is successful, you'll have regular check-ups, especially during the first year. Initially, you may need blood tests several times a week, then once a week, and gradually less often. Over time, if you're doing well, the frequency of check-ups will decrease, but they'll still be needed to make sure your kidney is functioning properly and that you're on the right dose of anti-rejection medication.

How soon you can return to work depends on your recovery, the kind of work you do, and you’re other medical conditions. Many people can return to work eight weeks or more after their transplant, but sometimes it can be sooner or later. Your transplant team will help you decide when you can go back to work.

In general, transplant recipients should eat a heart-healthy diet (low fat, low salt) and drink plenty of fluids. If you have diabetes or other health problems, you may still have some dietary restrictions. A dietitian can help you plan meals that are right for you.

You should learn as much as you can by reading and talking to your healthcare team, as well as patients who already have kidney transplants.