You’ve been diagnosed with kidney disease. Now what?

Being told you have a long-term, life-threatening disease inevitably comes as a shock. Here’s how to adjust to your new normal.

End Stage Kidney Disease (ESKD) is, sadly, life-threatening if left untreated. “This is because kidneys function to remove wastes and toxins from the blood. When the organs are no longer able to do this, the toxins build up, accumulating daily,” explains Khomotso Legodi, unit manager at Mediclinic Potchefstroom Renal Services.

It’s understandable, then, that a diagnosis of kidney disease (even if it has not yet reached failure) may leave you feeling depressed and fearful – and why kidney patients are advised to work with a multidisciplinary team. For example, at Mediclinic Potchefstroom Renal Services, patients are able to consult a psychiatrist, who will help then work through their complex emotions at this stage.

“We also have in place a pre-dialysis programme, which includes education for patients and their families,” Legodi says, adding that family support is vital. This support may be emotional shortly after a diagnosis, when patients may welcome being able to talk about their fears and worries, whether that means discussing the uncertainty they feel about the future, their worries about dialysis, or simply grieving the life they have lost – because being told that you can no longer take your health for granted is a serious loss indeed. Giving them room to talk will help them process these feelings.

Patients will also value practical assistance, such as transport to dialysis appointments.

If kidney disease progresses to failure, family support tends to become even more practical in nature. “Patients with ESKD have, typically, spent a long time in hospital, and are often unable to do anything for themselves. Family members will have to step in to care for them; hence our accent on education,” Legodi says. This education usually takes place before the patient is discharged, so that they (and their family members) know what to expect.

Practical matters

Often, getting to grips with the pragmatic aspects of a disease can be comforting, because they provide a sense of certainty, helping you understand what to expect from treatments and how they may impact your life. Your nephrologist will play a key role, helping you understand what has happened to your kidneys, and what you can expect in terms of your quality of life going forward.

Your nephrologist will, moreover, offer guidance around the choice of renal replacement modalities available and, if you are considering dialysis, will create a point for dialysis access. For example, if you opt for Continuous Ambulatory Peritoneal Dialysis (CAPD), you will need to insert a catheter. A solution used to clean your blood of toxins will be inserted into the peritoneal cavity through this catheter.

Says Legodi, “It is important to follow a programmatic approach to care, because this ensures that you are both physically and mentally prepared for treatment. This can result in fewer hospital days in the first months after beginning dialysis.” This can also help with cost savings, Legodi adds.

Embracing a new normal

As frightening as all of this may be, Legodi says that patients with ESKD can still live their normal lives - even if they’re waiting for a transplant.

It’s crucial, though, to attend dialysis appointments as scheduled. “At our units, we draw blood for tests monthly to check the progression of the disease, or even see if there is further treatment available that will help to improve the patient’s quality of life.” Legodi says that it is often possible to schedule appointments at your convenience, so that there is minimal disruption to your usual routine,

You will also have to make changes to your diet, Legodi advises. You will consult a dietitian, who will guide you around the consumption of fluids and sodium to ensure that no additional strain is placed on the kidneys.

“Many patients are able to live comfortable lives for years, so long as they adhere to practitioners’ advice for fluid and dietary intake and comply with treatment and dialysis,” Legodi concludes.