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
If you would like to donate you can visit the crowd funding page
Or purchase the Ayla top created by dogstar (a portion of profits will go to Ayla)