PURPLE CHICK MOVING ON

MOVING MY STORY ALONG

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Hello everyone, I have decided since my last blog to move on from the finer details of what my family went through following my dad’s death. This is in my head for any of you to ask about, but i need to get to In the MOMENT and express words I need to get out, Iv waited long enough. I am determined to make a difference to what happened to me not happening to others.

MY STORY FOR OTHERS

BELOW is a feature I wrote for my Local Chorley Guardian following my 1st Anniversary Party on 14/2/14. Gaynor believed in me, who is a star and continues to follow me now. This was sensitively written for anyone to read at any stage of RENAL.

Lorraine is given the gift of life thanks to her family – Chorley Guardian
http://www.chorley-guardian.co.uk/…/lorraine-is-given-the-gift-of-life-thanks-to-…
12 Feb 2014 – When Lorraine Pooley’s dad died at the age of 36, she could not predict the impact it would have on her life.

ADPKD FACTS

ADPKD – AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE

PKD is the world’s most common inherited kidney disease, where cysts fill with fluid, develop and multiply in both KIDNEYS, both maybe affected. The LIVER {as in my case } and the BRAIN can too.

Approximately 12.5 million people have this disease worldwide and around 1 in 400 people. Half of these will more than likely have kidney failure by the time they are 60 years old, many before that age, as in myself in my late 40’s!

Many will experience regular pain, body changes, disability and anxiety throughout life. If someone has ADPKD, there is a 1 in 2 (50 percent) likelihood that the disease will pass to each child born. ADPKD is so varied amongst each individual. My PKD journey has been different to my sisters for example. I looked like I was pregnant for years pre renal failure, with fluid build up and enlarged kidneys and liver. My sister, however, her kidneys did not enlarge, but she had other complications.

MY VIEW

FACT: PKD IS SILENT
FACT: PKD is …..STILL….Detected BY SOMEONE DYING
FACT: AFFECTS WHOLE FAMILIES 2/3 can have
FACT: KNOW YOUR FAMILY HISTORY & DON’T IGNORE..for any inherent disease
FACT: 12.1 MILLION have this disease WORLDWIDE
FACT: MORE PKD PATIENTS OUT THERE we don’t know about
FACT: WHY DO MORE NOT KNOW ABOUT THIS RENAL DISEASE?
FACT: PERSONAL MISSION……MORE WILL KNOW ABOUT IT
FACT: THIS is a LONG TERM CHRONIC DISEASE
FACT: EVEN after TRANSPLANT, You still have the disease
FACT: TRANSPLANT gives LIFE & PKD is one disease that can have in most cases, but because of the other organs this nasty disease affects, not ALL can have a TRANSPLANT and therefore life on DIALYSIS is the only option {life on a machine… Topic for later}

USEFUL LINKS

http://www.pkdcharity.org.uk
https://www.pkdcure.org
https://www.facebook.com/lorraine.pooley.820?ref=bookmarks

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2 thoughts on “PURPLE CHICK MOVING ON

    • Hi Vera, thanks so much fellow warrior for taking the time to support me in doing this. It’s been a wish of mine to share more of my story openly, more than I have done before. Friends have encouraged me, having seen me struggle, but still positive and driven. Chronic Kidney Disease needs more awareness and just wanting this Blog to open people’s minds, through my other interests too, to exactly what going through our illness is all about. Take me a while!!

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