Many people have heard of Polycystic ovary syndrome (PCOS) but less known is a kidney disease  ADPKD – AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE, the world’s most common inherited life-threatening condition, in which fluid-filled cysts develop in both kidneys. Between 1 in 800 and 1 in 1000 people worldwide suffer from ADPKD. Over half of those affected will have kidney failure by the time they are 60 years old. If someone has ADPKD, there is a 50% likelihood that the disease will pass to each child.

There is a version that affects children – ARPKD – AUTOSOMAL RECESSIVE POLYCYSTIC KIDNEY DISEASE occurs in children and results in enlarged kidneys with or without cysts, liver enlargement and often high blood pressure.  In ARPKD, sadly, 30% to 50% of ARPKD infants die at birth or shortly thereafter, primarily as the result of underdeveloped lungs.

My story is about the adult version ADPKD.

My mother was diagnosed with having ADPKD a few years ago and I went for a test to see if I could possibly donate a kidney at a later date but unfortunately an ultrasound revealed the tell tale signs of the disease, cysts on my kidneys and coupled with the fact that I have always had high blood pressure, a diagnoses was made that I too had the disease.

The disease is characterised by numerous fluid-filled cysts in the kidneys and often the liver and pancreas.

Over time, the cysts grow and multiply, replacing normal healthy tissue and causing the kidneys to lose their function. Kidneys can enlarge to 3 to 4 times their normal size.  ADPKD is a progressive chronic kidney disease and incurable. There is currently no treatment that will stop the cysts developing and growing. Symptoms vary from none to a variety of problems including pain, bleeding, infection in the urine, kidney stones and kidney failure. Nearly two thirds of people with ADPKD will develop high blood pressure. Treating blood pressure with drugs can slow the rate at which the kidneys deteriorate. Without treatment for high blood pressure the chances of a stroke or heart problems increase.

Day to day living with the disease doesn’t really impact on my life. I work shifts and very long hours in a physical job but as long as I try and drink plenty of fluids and don’t do anything to deliberately risk getting a blow to my kidneys, I wouldn’t know I had the disease. The main symptoms I get is pain in the back, sides or abdomen. This can be caused by enlarged cysts, bleeding cysts or kidney stones.

I have to keep a careful watch on my blood pressure as high blood pressure (BP) or hypertension is both a consequence and a contributor to kidney failure.

For anyone being diagnosed with this disease, I want to be able to reassure them that life can go on as before and will for many years, just remain a condition that is monitored by doctors and any treatment required will be tailored to the patient as and when the kidneys deteriorate.

For persons suffering from ADPKD, these are some recommendations from The PKD Charity:

*  Eat a moderate amount of protein – 0.8-1g per kg of body weight, and more if you engage in strenuous exercise or manual work. If you are a vegetarian, substitute soy products but avoid those high in sodium/salt.

* Drink 8-10 glasses of fluid a day, 50% being water.

* Eat more fruit and vegetables

* Eat fish and meat low in saturated fat

* Keep alcohol at a minimum:  14 units per week for women, 21 units per week for men.

* Avoid Chinese medicines and any herbal/vitamin supplements without ingredient labels.

I’m no medical expert but I believe following the above advice could benefit all, not just people with ADPKD!

By Lee-Ann Haigh