Let’s start an Australian Chapter!

Polycystic Kidney Disease awareness has not been big in Australia, there are foundations in America and the UK but not properly established foundations in Australia. Something that I would really like to focus on bringing out here. The foundations have been fundamental in raising money for polycystic kidney disease research in hope of one day finding a cure for the disease.

If we can get enough support it would be fantastic to start raising money and awareness in Australia and I hope that this page has been effective in starting the awareness campaign. The disease is more common than you think and unlike many other diseases there is no way of preventing it or stopping it in its tracks. The cysts are unstoppable and without further research there is no way of stopping.

Australia it’s time to take control, it’s time to take a stand, it’s time to raise awareness, it’s time to find a cure, it’s time to end this disease and it’s time to SEE PKD!

It’s just one little test..

The scariest thing about a disease like Polycystic Kidney Disease is that it can go undetected as there are no real symptoms until it gets really bad. I didn’t have any symptoms, but I knew there could be a possibility so I had the scans done and sure enough there it was. Whilst it doesn’t effect me now, it does mean that I am able to change my habits and change my lifestyle to make my kidneys last longer, rather than not knowing and having my kidneys fail quicker.

The scans are just like an x-ray, and if you detect PKD- it is worth asking your doctor about CT scans as well as the cysts can spread to other organs, and it’s better to be safe than sorry!

That’s the saying I life by- check everything, monitor everything because it’s better to be safe than sorry!

Talk to your doctor today!

PKD – Dee’s Story

My mother was diagnosed at age 50 . After 5 years on dialysis she passed away. This was in the early days of transplantation and as this was not a common practice it came to a point where dialysis no longer worked and there was nothing more that could be done . I was diagnosed at age 20 . I became a nurse and so knew what lay ahead.
I had 4 boys – 2 have PKD. They joke with each other about who will donate their kidney to whom when the time comes.!
I had a live doner transplant from my husband .
I returned to nursing as a lecturer.
I cherish every new day.
My boys are in a better position than I was as they were diagnosed early. I pray that they will be ok!
They now have so much more knowledge than I had . Their illness will be handled far better than mine at the same age.
Look after your kidneys. It is so important.

Dee

Polycystic Kidney Disease- what is more important?

A lot of us take our good health for granted because it’s easier to go on with normality than to stop and put a little effort in to prolong your life.

Step 1. Go to the doctors.
- Get a general check up, scans etc to check how all of your organs are working.
Often we don’t know there is an issue, there is no sign- no pain or warning- these things just creep up on us. This is why the best thing to do is get regular check ups, be in control of your body!
Step 2. Change your diet.
Changing your diet to a healthier option minimises the risk of future problems, this includes alcohol intake, fat intake etc.
Step 3. Get off the couch
Incorporate exercise into your daily routine, this also minimises the risk of future problems.
It’s that simple.
Change your attitude, change your routine and change your life to save your life!
Keep your kidneys safe!

Healthy kidneys = healthy life!

There are a few simple things that you can do to keep your kidneys healthy: kidney6- Drink plenty of water: Your body needs water to flush out toxins and properly digest all the waste, without it your kidneys will struggle.

- Be salt free: Salt intake can lead to high blood pressure which in turn damages the kidneys and stops them from being able to function properly.

- Low protein diet: High red meat intake and protein intake can damage the functioning of your kidneys because protein metabolism puts heavy pressure on your kidneys.

- Dairy products: Just like protein and meat, dairy is a difficult food group to metabolise, make it easy for the kidneys and stick to natural food groups.

- Caffeine: From coffee to energy drinks, caffeine can be bad for the kidneys because it’s a stimulant which means it increases the blood flow, leading to high blood pressure.

The summary for this is that it’s best to stick with the natural food groups, fruit and vegetables for the win!

PKD – Jennifer’s story

My journey began at the age of 16 when my whole world changed.

My mother – aged 49, who previously had been well, became very ill.
After many tests she was diagnosed with PKD –a genetic disease. The cause of her own father’s death many years earlier was inconclusive and as her mother lived until 94 – it is strongly suspected that her father carried the rogue gene.
After diagnosis, my mother was placed on dialysis – initially in hospital then at home.
My parents did not speak much about this disease so it was incredibly confronting for my sister and I to see our mother “hooked up” to a machine (which in those days, took up most of the room) each night. She would dialyse overnight and my sister and I would take turns in helping her “disconnect” the machine in the morning as my father left very early for work. This involved removing a needle from her arm, stopping the bleeding and cleaning the machine – I would then go to school and my sister to work. Sometimes the bleeding would not stop and I would call an ambulance.

My mother continued this regime for 5 years until one night whilst on dialysis she had a stroke. A cerebral aneurism can occur with PKD. She passed away 2 weeks later.

My sister and I were then tested and diagnosed with PKD. The gene had been passed to both of us even though there was a 50/50 chance of inheriting the disease.
This was in the mid 1970′s. Treatment options were few and my sister and I were told to go home and “not worry about it until you are older”
No information about blood pressure monitoring, diet, lifestyle or health options!

Fast forward to the 1990′s and now under a Renal Specialist my blood pressure and lifestyle factors were beginning to be monitored carefully. At age 57 I am now heading towards dialysis or hopefully a transplant within 3-5 years.

My daughter has been diagnosed with PKD (aged 21) and now she is being monitored closely through regular blood tests, ultrasounds and Specialists visits.
There is certainly more hope and options for her in the future than there has ever been.
I can only wonder if my outcome would be different if I had the same level of support as she has now.

Lifestyle diseases are avoidable – PKD is Genetic – luck of the draw, bad luck etc , call it what you like. WE MUST FIND A CURE!

FYI- Kidneys hate drugs.

We always hear negative facts about the impact of alcohol, party drugs even prescribed medication on our bodies but did you know just how bad these are for you?

Taking ecstasy, cocaine, heroine etc increases blood pressure, causing high blood pressure which can lead to strokes, heart failure and kidney failure. Taking party drugs even just five times in your life will decrease your kidney usage by up to 17%.

Drugs stop the normal flow of blood, if your kidneys are already damaged then they will struggle to process the waste which can ultimately lead to kidney failure.

This is why you need to get tested, to be able to manage the risks of kidney damage.

Let’s be smart, lets keep our kidneys healthy!

 

What It’s time to see PKD means to me..

When I was about 15 years old I remember my mother coming to me and mentioning that one day we could have kidney issues, but not to worry because it’s still a long way off. Then the next I remember hearing about it was when I was 19 and my sister went into hospital with a severe kidney infection, she was tested and it came out negative for Polycystic Kidney Disease. I had absolutely no idea what this disease was but I was sure soon to find out.

Mum sat us down and told us the genetic history, that her mother had the disease and she had pretty much watched her die with little to no knowledge of what this disease was. Of course me being the #YOLO chick I am took the ‘i don’t give a shit, I don’t want to know about it’ approach because hey I was heading into uni life and I wanted to party it up without feeling guilty. So that is exactly what I did.

Little did I know that in those few years of doing the standard college lifestyle and having an awesome time, both my sisters had been tested negative for Polycystic Kidney Disease. I would get a call every few months from mum saying “please make sure you are not doing drugs, because you could have this kidney disease.” Once again I embraced the #YOLO approach and told mum I didn’t want to hear about it, because I was young and having a good time.

After my college years had finished up, I moved into a share house with two of my best friends where the party lifestyle was still there but I was beginning to grow up and realise that there was more to life than the college craziness.

It wasn’t until September 2012 that everything all came to a head. I had fainted and hit my head in the shower, and naturally went straight to the hospital where I thought it was just one of those accidental things but Mum saw it as an opportunity to jump on the Polycystic Kidney Disease bandwagon and had me tested straight away.

If two out of three siblings didn’t have it.. then it was pretty much a guarantee that I would. There it was as clear as day in the scans.. I had been diagnosed with PKD and I was about to embark on a huge life change.

That’s life though, there is no cure. At least I can be thankful for the fact that I have two older sisters with perfect kidneys that I have shotgunned.

I love my mum more than anything in this world, and know how hard it was for her to sit next to me when the doctor told me that I had it- as if I didn’t have enough of a connection with her before, I definitely have it now. She is amazing and I want her to know that I do not hold any resentment towards her, only to shitty kidneys- but we can hate them together. Love you mum- let’s kick PKD’s butt!

About It’s time to see PKD

PKD 1

Who are we? We are a non-for-profit initiative aiming to raise awareness of Polycystic Kidney Disease to encourage early diagnosis of the disease. Early diagnosis allows for a change in lifestyle habits from a younger age, which will improve individual health and increase the longevity of the kidneys.

What is Polycystic Kidney Disease? Polycystic Kidney Disease, or PKD is most commonly a genetic condition. Genetic defects result in blisters of fluid (the cysts) forming on the kidneys. The kidneys are normally affected at different rates, the cysts will continue to grow around the healthy kidney tissue until the kidneys eventually fail to work. There is currently no cure but the disease can be managed and research into treatment options is ongoing.

Why is awareness important? The earlier the diagnosis, the longer the kidneys will survive. Early diagnosis will allow for a change in lifestyle habits and health which will in turn increase the longevity of your kidneys. Keeping blood pressure at a normal level is the most important factor in increasing the life span of a kidney, little things from reduction in salty foods to drinking less alcohol and exercising more all impact the well being of the kidneys.

What can I do to help? The aim of the campaign is to raise awareness, so by liking and sharing us on Facebook as well as following us on Twitter you can help get the message out to those who need it the most!

Facebook page: www.facebook.com/PKDAustralia

Twitter handle: @seePKD

Thanks for all of your help- let’s keep awareness of PKD growing!

It’s time to see PKD

It's time to see PKD

Today is Polycystic Kidney Disease awareness day which made it an appropriate day to begin this campaign. It’s time to raise awareness and encourage early diagnosis of Polycystic Kidney Disease. Get tested early, change your lifestyle habits and live longer!