What Is PKD?
Polycystic Kidney Disease (PKD) is a genetic disorder of the kidneys. In layman’s terms; fluid filled cysts develop and grow in both the kidneys, causing kidney enlargement and declining kidney function, as the cysts crowd out the healthy tissue over time.
Technically PKD is terminal however, dialysis and ultimately kidney transplant are options for those who reach end stage renal failure before age or other ailments take them. The disease progresses at different rates for different people and the reasons for which are largely unknown. Predictions of decline are generally based upon family history where the disease has been inherited.
My Nephrologist, Dr Brian J.Nankivell, tells me that there are a number of human drug trials underway to control or halt the disease. Whilst several of these are not proving promising, there is apparently one medication that holds some hope of passing the trials successfully. The catch is that even if it does work, whether or not it reaches the consumer is apparently dependent upon government backing. This process may well take a decade, if it reaches the market at all.
There are two types of PKD – Autosomal Dominant (ADPKD) and Autosomal Recessive (ARPKD) but only ADPKD will be addressed in this blog. ADPKD is generally inherited, however, in rare cases such as mine, a person develops it despite there being no recorded family history. An estimated 30,000 people in Australia have diagnosed ADPKD and there are many more who would not yet know that they have it as it can appear asymptomatic often until people reach their 30′s-50′s. Of those 30,000 it is estimated that only around 3,000 have the uninherited form (yes, I am ‘special’). About half of those who have ADPKD will reach end stage renal failure during their natural lifetime.
Aside from the kidney cysts and functional decline the symptoms of PKD can include: Liver and Pancreatic Cysts, High Blood Pressure, Pain in the back, sides and abdomen, Enlarged Abdomen, Headaches, Brain Aneurysms, Blood in the urine, Urinary Tract Infections, Kidney Stones, Abnormal Heart Valves, Diverticulosis (outpouchings in the wall of the large intestine), Abdominal Hernias and Depression.
Whilst there is currently no treatment or cure for PKD, there are certainly lifestyle modifications that can be made to reduce strain on the kidneys and keep the body in better shape for transplant candidature. Self-care of PKD centres upon leading a healthy lifestyle and adopting dietary changes to manage the symptoms. Refer to your specialist and demand to be put in touch with the local hospital’s renal dietitian (I have found that inexperienced private dietitians have no idea when it comes to assisting PKD patients not yet at failure). Also learn to pay attention to what your body is telling you itself. In order to do so you may need to kick unhealthy habits and eat mindfully rather than on the run. Your blood test results may suggest a need to lower your intake of salt, protein or to adopt a more alkaline diet. Caffeine, alcohol and non-steroidal anti-inflammatory medications (NSAIDs) worsen kidney function. Contact sports and activities involving physical impact to the kidney area are also out.
I have found the following PKD info resources helpful: