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An interview with Ayla

Sunday, 25 February 2018 7:08:52 PM Australia/Sydney

 

Ayla in recovery



-How did you discover that you needed a kidney transplant?  

 My only symptom was high blood pressure. After a doctor’s visit, a blood revealed my kidneys weren’t functioning properly. I was sent to the emergency department and spent the next 6 days in hospital. The 3rd day there the Nephrologist (kidney specialist) sat with me and told me "Your kidneys are functioning at 6%. You're going to need to go on dialysis and eventually you'll need a kidney transplant."
I knew very little about transplants and had no clue of what dialysis was so I wasn't too concerned. "Just give me some sweet dialysis, pop a kidney in me, and I'll be on my way." I had no idea this was the beginning of a life long journey.

-What was that diagnosis like for you?

While in hospital I had a biopsy, where they took a piece of my kidney to determine if the damage could be reversed, I received the results a couple of weeks after my discharge. The Doctor was very casual about it,

"So... you know you have stage 5 chronic kidney disease?"

"...I do now?"

I felt insignificant and quickly learned I can't expect people to understand what I’m going through or expect much empathy. Chronic Illness is a very solitary world and you become a mere spectator of life.

-Tell us a bit about your journey with stage 5 chronic kidney disease?

My world was upside down, everything changed. Firstly, my diet, I was heavily restricted from most foods and was also restricted to 1500ml of fluid a day, I was also on a massive amount of medications which affected my memory.
Then there was dialysis. Every night I was connected to a machine for 8 hours while it cleaned my body of the toxins that built up during the day. Trying to sleep while tethered to a machine never becomes comfortable, it just becomes the norm.
Despite these restrictions, I managed to live a relatively normal life. I worked full time with the amazing dogstar team who have supported me every step of the way, I maintained a social life, even upheld my creative side by curating a zine series focusing on young adults with Chronic Illness.  
I didn't let my diagnosis take over my life, it was just a part of it.

-The turnaround, how did it feel to get that phone call from the hospital?

Even though I waited 2 years and 4 months for that phone call, nothing could ever prepare me for it. It was 6.45am on a Tuesday morning. They said they had a really good kidney for me and told me to come to the hospital in the next hour. I tried to pack a bag but I couldn't gather my thoughts. My brain was buzzing, my heart was pounding, I have never felt that elated. It was the best moment of my life. Arriving at the hospital they knew exactly who I was. This was it, it was really happening. 


-How has your recovery been so far?

My new kidney started cleaning my body up straight away. My kidney function has gone from 3% to 75% and is continuously increasing. The doctors have said that it couldn't be going better.
I have so much energy which is a little frustrating because I am still recovering. No dialysis for 22 days and I’ve been able to eat all the foods I couldn't before although I’m still on a lot of medication.
It is a very emotional time for me, I’ve been reflecting on the past few years, on dialysis, the life changing surgery, my donor, their family and the new life I have in front of me.

-What is involved day to day living with your donated kidney?

After the transplant, I was put on a number of anti-rejection drugs to keep my body from attacking my new organ. This continues for the duration of the life of my kidney. This means I need to be very careful day to day ensuring I avoid any chance of infection or illness. These drugs also increase my chance of getting skin cancer so it's important I’m mindful of sun exposure.
It’s important to really look after myself, be as healthily as possible. I like to treat my new kidney like a newborn baby, it's my job to protect it and ensure it has the longest possible life span.

-Why is registering as an Organ and Tissue donor so important.

Up to 10 people’s lives can be saved if you are an organ and tissue donor.
Sadly only 1-2% of people who die can actually donate their organs, it’s so important to have as many people registered as possible. In Australia, there are currently 1,300 people on the waitlist for an organ and these people are waiting up to 7 years.
Because of one incredible person who chose to register, myself and a number of other people have been given a second chance at life. I think of my donor every single day and the gift that I have received from them.
It takes 2 minutes to register online.

That's all it takes to save a life like mine.

-Ayla thanks so much for opening up to us, you’ve come so far in just a few short weeks and we can’t wait to see what your future holds.


For more information on organ donation, please visit

https://register.donatelife.gov.au/decide

If you would like to donate you can visit the crowd funding page

https://www.youcaring.com/aylabrett-1085680

Or purchase the Ayla top created by dogstar  (a portion of profits will go to Ayla)

https://www.dogstar.com.au/ayla-top.html






Posted in Community Dogstar By dogstar australia

New Paddington Store

Thursday, 5 October 2017 12:28:33 PM Australia/Sydney

New Paddington Store

 

Sketching a dress for the 'Lights of Paddington' Parade

 

Paddington in Brisbane has been our home for more than 10 years now. We began our time there up at the top end of Paddington on Latrobe Tce (near the kookaburra cafe)

Earlier this year we were offered an opportunity to relocate to the central part of Paddington, needless to say, we jumped at the chance and have never looked back.
After a very simple fit out we decided to keep the store clean and crisp with white walls and black trim, we now feel completely at home in our newest space with lofty ceilings and large front windows.

The best thing about this relocation is our new community who have been most welcoming. Situated between Montrachet restaurant and Miss Henry, we are very close to other local designers (and old friends) Maiochhi and Sasha Drake. 
 
Tomorrow night is the annual 'Lights of Paddington' fashion night and we are thrilled to be a part of this wonderful event, showcasing our latest range along side an impressive line up of designers and retailers. Tickets for the event have sold out but we are hosting a gathering beforehand at our new boutique at 222 Given Tce from 5-7pm. 
Please come and say hello to myself and join us for champagne and chocolates.


Lights of Paddington

 

 

Click map for details

 


Posted in Community Dogstar By Masayo Yasuki

Shake It Up!

Friday, 14 July 2017 12:39:11 PM Australia/Sydney

 

Time to shake it up! 

 

 

 

Caroline, what made you decide to raise awareness and funds for parkinson's?

 Parkinson's is a part of my family, it could be part of our DNA, past through a mutated gene from generation to generation, we just don't know, it's in there lurking and can appear at any time. It's sneaky, and relentless, and new studies are looking at the genetic links between family members and parkinson's... or 'parkies' as we call it. If I can raise money to help sufferers now, and maybe someday help my children's children etc, then I should.

Here are some basic stats on the disease in Australia. I think you'll find it quite surprising.

 

Parkinson’s is the second most common neurological disease in Australia after dementia.

The disease affects an estimated 10 million individuals worldwide – 80,000 in Australia.

32 Aussies are diagnosed with the disease every day.

20% of sufferers are under 50 years old and 10% are diagnosed before the age of 40.

The number of people with Parkinson’s has increased by 17% in the last six years with costs to the community increasing by over 48%.

For comparison purposes the prevalence of Parkinson’s is greater than prostate, bowel and many other forms of cancer and the total number of Parkinson’s sufferers is 4 times the number of people suffering with MS.

The above statistics were obtained from https://shakeitup.org.au/understanding-parkinsons/

 

 What are you planning on doing personally to help fundraise for this condition?

 I've decided to run a half marathon. *grits teeth* That's 21.1kms

 

Why run a half marathon?

 I needed to challenge myself, both physically and mentally, like a person who has parkies does daily. Because, for Parkinson’s sufferers, every day throws new challenges at them. I've never been a 'runner', I'd do the odd 10k here and there, but I set myself a goal; the Sunshine Coast half marathon, I thought, it would be the perfect challenge for me, not only physically, but mentally too. At first I thought it would be a huge achievement just to show up to the start line, then to just maybe crawl across the finish line. But now, I want to finish in under2 hours. EEEEKKKKK!

 

What's your personal experience with Parkinson's?

 That's a really hard question to answer, I feel I've been luckier than other members of the family, my Mum and Dad don't have it, but it's hard knowing that each day it effects the people I love dearly. Maybe the following story can help you understand. My cousin Chelsea wrote it.

 

A firm handshake, accompanied with a warm smile, and a standard “G’day mate, how’s it going”, from a youthful man greeted him at the gate. However, the refuge of a monstrous gum tree’s shadow from the piercing sun’s heat ironically provided a warmer welcome to John. Whilst John’s sky-blue eyes sceptically scanned the other man’s face, the stranger’s mouth opened to speak. But, John had never been a fan of chit-chat, so he interrupted him and got straight to the point.

Look here boy, this car is my baby. I want to know what your intentions are?”, hedemanded.

Without hesitation and with a twinkle of similar humour, the man replied, “I can tell you my intentions are pure sir. I wish to continue the legend you’ve paved with this car by aiming for more racing glory.”

John’s brow furrowed as he slipped into deep thought. His hand holding the keys crept towards the man but froze mid-air. John could have sworn he heard a whisper of the once deafening crowd that swarmed him and his car after a win. Shaking his head, he studied his hands; they were worn leather, course from gripping the steering wheel and labouring away adjusting his machine. They remained stained from grease acquired from repairs, and calloused from hours spent polishing until he could see his reflection clear amongst the vibrant red hue of the car’s exterior. Back then, John was a strong man and his motor skills were lightning; his speed and precision in racing was unmatched. Soon he was up to his neck in trophies, and as the trophy sum swelled so did his pride at the name he had made for himself.

This car was his escapism. Nothing compared to the thrill of the drive. The cool sensation of wind whipping his hair and the sound of the engine roaring made his heart soar. In this car, he felt free and invincible.

The weight of the diagnosis was heavy on Dr. Williams’ heart. He and John were old friends. They had spent plenty of summer nights sharing jokes and beers by the barbecue with their families. When John’s wife passed, Williams was his sole companion through the grief. It’d never crossed his mind that he’d have to deliver such sombre news. John only had to take one look at the doctor’s face to realise the results wouldn’t be pretty.

Give it to me straight doc. Will I be sprouting beans out of my ears in two months time?” John demanded.

No John, I’m so sorry… You have Parkinson’s disease,” Dr. William’s replied meekly.

John felt as if his world had crumbled. All his life he had been fit and healthy; he couldn’t believe it, he refused to believe it. Even over time, he failed to observe the changes that steadily crept up on him. A shuffle replaced his once confident stride. His bones ached and his balance was thrown. He was always up late at night and early in the morning. In mid-conversation, his thoughts would often drift leaving him in a state of confusion. Yet, he turned a blind eye.

It was only when skimming his fingers gently over the dusty dashboard of his race car one morning, that a tremor that racked his hand screamed the loudest testimony for John. Still, he turned the keys letting the awakening engine’s hum serenade him. Seeking to control the shakes, he gripped the gear stick forcefully and slid it into drive. John was determined, but clenching his fists caused the tremors to become more violent. Pools of sweat soon swelled and dripped slowly down his temples. He began reassuring himself that it had always been stuffy in the car and that he was just imagining the fatigue hitting his body in waves. Ignoring danger signs, John went to move his driving leg with conviction. But, it wouldn’t cooperate. John was horrified as he realised that it had locked into place. His vision abruptly skewed. Suddenly, he felt trapped inside the car. Panic seized him as he tasted bile on his tongue. He had to get out. He couldn’t breathe. Wrenching open the door, John splayed onto the lawn on all fours, while the world seemed to spin around him. Lying on the ground beaten and afraid, John then decided it was time to pass on his most treasured possession.

Hello?” repeated a male’s husky voice.

A loud beep echoed the room. That was the tenth person inquiring about the race car advertisement today that John had rung and hung up on. Every time, he wrestled with his mind, assuring that this was the right thing to do. But, each call not even a murmur of sound escaped his lips. He couldn’t bring himself to do it. This car was his freedom, his youth, his love… How could he give that all up over a supposed illness?

The warmth of the stranger’s hands embracing his own shaking ones broke John’s reminiscence. The young man was looking him in the eye and utterly beaming reassurance.

I promise I’ll take care of this car John. No harm will come to it, not on my watch. I want you to know that you can come visit to watch me race whenever you please, or if you feel like having a chat I’m here for you,” he stated.

Relief flooded John’s body as he grasped that this man was not a stranger. Afraid of letting go of his freedom, and accepting his present and future, John felt isolated within his disease. Through the simple and kind words of this young man, John finally felt no fear. He realised he was not alone in this journey, and that invincibility can come from solidarity.

Placing the keys in the palm of the man’s hand, John nodded and left the property.

At home, John studied his trophy cabinet with fondness waiting for the phone to dial.

Parkinson’s Queensland replied within seconds.

Hi, I’m John and I suffer from Parkinson’s disease. I’d like to join the closest support group near me.”

-Written by Chelsea Peachey

 

That's a really powerful story, thank you for sharing.

 

What can we as readers do to help reach your goal?

 

I've set up an every day hero fundraising page, through the Sunshine Coast Marathon which is linked directly to the charity https://shakeitup.org.au so 100% of all donations go directly to Shake It Up to help fund research for treatment and ultimately a cure. My every day hero page will show exactly where I am on my target and you can even share the link around via email and facebook.

 

https://sunshinecoastmarathon2017.everydayhero.com/au/carolineross

 

We wish you all the best for the run and look forward to hearing about it Caroline!

 Thank you. Who knows, maybe a full marathon next!

 

Posted in Collaborations Community By dogstar

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