Get involved – Look after yourself

Some patients choose to “sit back” and let the medical professionals look after them.

Doctors will tell you that patients who talk an active part in managing their own treatment have better outcomes.

So what should you do?

Here are some things to think about as a dialysis patient or a carer:

A positive attitude – All renal patients will tell you there is no “normal” route through Chronic Kidney Disease and renal failure. There will be many twists and turns. At times things might feel over whelming. Maintaining a positive outlook is vital to help yourself get through the challenges ahead. Talk to you family & friends. By some estimations, 25% of patients with renal failure suffer from depression. Talk to your clinic’s counsellor.

Educate yourself – learn about your kidneys and your specific kidney disease. Talk to your doctor. Take advantage of the education sessions available through the Advanced Kidney Care Clinic. These include sessions on dialysis and transplantation.

Diet – eat the right things. Keep to your low potassium diet or other as recommended by the clinics dietician. For more information on diets see the section on this subject.

Blood pressure – measure your blood pressure at home. Machines are compact and affordable. Ask your clinic team for recommendations. Weight loss will help with reducing your blood pressure as well as reducing your intake of salt.

Weight and fluid management – Being overweight can lead to significant complications for renal patients, placing a greater strain on their hearts and other organs. Transplant surgery is further complicated and conditions such as diabetes are more likely. In addition however many renal patients actually lose weight during their treatment. Loss of appetite, the effects of haemodialysis and a stricter diet mean that they find themselves losing kilos. Tracking this weight-loss is equally important. Fluid gain can take place if the patients dry weight is not adjusted in line with weight (fat) loss. The first signs might be swollen ankles followed ultimately by breathing difficulty with fluid on the lungs.

The KPA recently bought the clinic a Body Composition Monitor (BCM). The BCM has been specifically designed for patients with kidney failure. You just need to have two sticky pads attached to your ankle and wrist and lie still. In less than two minutes the BCM – Body Composition Monitor gives information about the individual’s fluid status. For more information ask your consultant or the haemodialysis coordinator.

Medication – Of course it is vital that as patients we continue to take the medicines we are prescribed, in the dosage and at the time specified. Talk to your consultant about what you should do if you are late or miss your medication. If you have diabetes, keep your blood sugar under control by taking your medications, watching your diet, and monitoring your blood sugar level. Discuss all medications, even over-the-counter drugs, with your doctor.

What you drink & urine output – as the capabilities of your own kidneys diminish, they lose their ability to remove toxins in the blood. They also lose their ability to remove excess fluids from the blood and so patients begin to retain fluid. One of the functions of dialysis is to remove the excess fluid. However a regime of fluid restriction can reduce the amount of excess fluid gained between dialysis sessions. The less fluid you have removed at a session, the less strain on your body and the less tired you will feel after it. So monitor your urine output. The general rule is that you can “drink” (drinks, gravies, sauces, yoghurts and other non-solid foods) 500ml plus what you pass as urine. Sticking to this fluid regime will pay-off.

Care of your fistula – Be careful not to knock your arm for the first few days after your fistula has been created. Rest your arm – the wound needs time to heal. Do not drive/lift anything heavy with your fistula arm for the first two weeks. Check your fistula every day for the ‘thrill’. Never let anyone take blood from your fistula arm. Blood should always be taken from the veins on the backs of your hands. Please let staff know this if you are having blood taken. Never let anyone check your blood pressure on the fistula arm. Do not wear any tight sleeves/watches which may restrict the flow of blood through your fistula arm. Be careful not to lie on your fistula arm. A more detailed brochure for fistula care can be found here.

Hygiene – follow the medical teams guidance on keep access lines (and particularly the exit site) dry during showering and bathing. Make sure you use the hand gels provided on entry and exit of the wards you visit and before you clean wounds and apply dressings at home.

Keep your appointments – they are for your benefit. Missing them costs the NHS money, which we all want them to use effectively. You will also find it useful to write down the questions you want answered before the appointment so you are able to get the most from it.