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Living with ADPKD

Most people with ADPKD lead normal and active lives until they have lost around 90% of kidney function. Although the kidneys continue to produce urine, because cysts have damaged the kidneys’ filtering units, the urine passed is largely water and salts. It does not contain the waste products, which should also be removed by the kidneys. An accumulation of waste products leads to a variety of symptoms, affecting a person’s health and well-being. As kidney function deteriorates, your doctor will prescribe medications and perhaps suggest some dietary changes to relieve these symptoms.

As each person’s needs will vary depending on the degree of kidney dysfunction, you should check with your doctor about frequency of check-ups. Initially an annual check-up with your local doctor to monitor blood pressure is advised even if your kidney function is normal. If you have high blood pressure or abnormal renal function, it is important to see a doctor more frequently.

Maintaining good overall health through diet, exercise, not smoking and controlling risk factors for cardiovascular disease including hypertension can all help prolong kidney health.

There are several things you can do to try and reduce the risk of developing impaired kidney function:

  • Control blood pressure. The current goal blood pressure for people with ADPKD is less than 130/80. It’s important to control blood pressure because high levels may further damage and scar the kidney and is also a risk factor for heart disease and stroke.
  • Control cardiovascular risk factors by maintaining a healthy diet, healthy body weight, exercising regularly and avoiding smoking.
  • Avoiding medications that may injure the kidneys. PKD patients are advised to avoid all Non Steroidal Anti Inflammatory Agents (NSAID’s) except in rare circumstances and under a doctor’s supervision.
  • Tolvaptan While no cure currently exists for PKD, there is one pharmaceutical treatment known as Tolvaptan (JINARC®), approved in Australia and available on the Pharmaceutical Benefits Scheme (PBS) for eligible patients with ADPKD. Tolvaptan (JINARC®) is a new treatment available in Australia for adults with ADPKD (autosomal dominant polycystic kidney disease) that can help slow the progression of ADPKD. Clinical trials have shown tolvaptan can slow the rate at which your kidneys become enlarged by cysts and can help to slow the rate at which your kidney function declines.

In general, you should avoid any medication that could harm your kidneys or affect your blood pressure. This includes Non-Steroidal Anti-inflammatory Agents.

  • Cold or allergy pills containing Sudafed.
  • Over-the-counter diet pills
  • Herbal supplements. These have not been studied for kidney disease and may be harmful for people with renal dysfunction. You should consult your doctor or nephrologist before taking any over-the-counter medications and supplements to help you assess the risks and benefits.

PKD and exercise

Yes, exercise is important for cardiovascular health and is encouraged for people with PKD. Activities where kidneys might be hit accidentally include contact sports such as football, rugby and boxing. While there is no evidence these activities worsen renal function, they can result in blood appearing in the urine. It’s also important to remember to keep well hydrated when exercising.

In general, most sports do not affect kidney function. Contact sports where the kidneys may be traumatized (flank or lower-back impact) should either be avoided or protective pads worn. Examples include football, rugby, hockey and particularly boxing or kickboxing. Horseback riding and cross-country biking are other sports where repetitive impact has resulted in blood in the urine in people with ADPKD.

Good exercises for people with PKD include sports where impact is minimized such as swimming, tennis, rowing, golf, biking and, to a lesser extent, jogging or running.

Mental Health in PKD

It’s common for people with a long-term medical condition to feel overwhelmed, get anxious or depressed about their illness. Having PKD presents specific challenges that may affect your emotions in a number of ways, such as how the disease has affected you or your family and you may worry about your or your children’s future.

Everyone is different, but it is normal for people with PKD or those caring for people with PKD to experience any number of emotions, such as shock, denial, sadness,
depression, anger, frustration, tiredness, stress, anxiety, apprehension, isolation, or a sense of hopelessness.

It’s often helpful to discuss how you are feeling with someone you trust, such as your family doctor or your kidney specialist, who can also refer you to a renal social worker or psychologist who is trained to listen to you and help you find solutions. There is nothing wrong with asking your doctor for a referral.

If you’d like immediate help, you can speak to someone who can work with you to explore options for support by calling:

Beyond Blue Infoline

1300 224 636

Lifeline

13 11 14

It is not unusual to feel sad or unhappy when you are living with PKD or any other chronic illness. It can be enough to simply talk over your feelings with someone who understands. Remember, it’s ok to be angry, unhappy or fearful, or to cry, shout or withdraw occasionally. If you feel these things more often than not, this may be a sign that you’re struggling to cope with your illness. Having a chronic illness means that you are more likely to develop depression, with symptoms such as irritability, problems sleeping, loss of appetite, loss of concentration and drive. Depression is more than just feeling sad some of the time and can sometimes make you feel like life is not worth living. It is, however, a disorder that is treatable and it doesn’t have to coexist with your illness indefinitely. Your doctor is a great person to talk about treatment options to find what will work for you to improve your feelings of well being and overall health.

Worrisome and fearful thoughts about your health and future is a common reaction in people with PKD, and your anxiety may be triggered at different stages of your kidney disease journey. For example if you are starting a new treatment or your kidney function declines you may find it difficult to think of anything else.  Additionally, your worry may extend to your children or the burden you feel you’re placing on your carer. Talking about your experience with someone who understands can often put your feelings into perspective. If you feel so anxious that you cannot cope, talk to your doctor who can provide you with treatment options that best suit you.

Make sure you include positive activities in your life such as being physically active, getting enough sleep, having a healthy diet, taking time to unwind or enjoy hobbies. Spend time with loved ones or be involved in the community to help keep your mind and body healthy. Talking with others who have had similar experiences can be really helpful in realising you’re not alone in your journey.

Additional Resources

Help us find a cure for PKD

Did you know that you can also donate via bank transfer?

Please use the details below and email your bank receipt to knowledge@pkdaustralia.org to receive a tax receipt.

Bank: ANZ
BSB: 012 323
Account number: 290 372 354
End PKD