Young woman, 29, who was diagnosed with an incurable disease after her 21st birthday is now hoping for a miracle – and one decision from a stranger can save her life
Shaylee Willis’ world was turned upside down after being diagnosed with an incurable autoimmune disease days after her 21st birthday – now she’s patiently waiting for a kidney transplant from an organ donor to save her life.
In 2016 the fit and healthy trainee zookeeper from Sydney received the life-changing news that she contracted lupus most likely after falling off a horse.
At the time she was working full-time at a stable, lifting hay every morning, tending to the animals and teaching kids how to ride ponies. Now due to physical limitations she’s a puppy school teacher.
The lupus nephritis led to kidney disease, requiring her to undergo dialysis three times a week for four hours each session.
Sydney puppy trainer Shaylee (pictured) was diagnosed with lupus (an incurable disease) in 2016 at age 21. This led to kidney disease and she’s now waiting for a kidney transplant from an organ donor
Shaylee, now 29, told FEMAIL she’s currently on the waitlist for a kidney transplant, which limits her ability to travel or make long-term plans.
Currently 1,800 others are on the organ waitlist and 14,000 more on dialysis for kidney failure who need Australia’s help.
Sadly more than 50 patients died last year while waiting for a second chance at life.
It only takes one minute to register as an organ and tissue donor on the DonateLife website or with three taps on your Express Plus Medicare app.
‘I’m always waiting for the phone to ring. I have to be in vicinity to the hospital because if they call me I need to be there by a certain time to accept the kidney,’ Shaylee explained.
‘It can be quite frustrating because with every call you get you’re anticipating it to be the one about the transplant.
Speaking to FEMAIL, Shaylee said her phone is always turned on loud waiting for a second chance at life – as doctors could ring anytime of day
‘I just wonder when it’s going to be my turn – and I’m sure everyone on the waitlist is thinking the exact same thing.
‘But at the same time, I can’t keep waiting to live. I just take every day as it comes.’
Living with kidney disease also involves strict dietary restrictions, including limiting potassium and sodium intake as this can be deadly. Meaning she can’t enjoy a packet of chips, hot chips or even a banana. She cannot have more than 1.5litres of fluid daily as it could mean death.
Prior to being diagnosed, Shaylee experienced dizziness and felt lightheaded, then her knees started swelling and had pain in her joints.
Feeling off, she decided to go to the doctor who conducted tests but found nothing sinister at first. Then suffered from severe anemia, causing her blood count to be very low, had frequent fainting spells and immune system issues.
Two months later she was diagnosed.
‘It all happened so quickly, but at first they thought it was rheumatoid arthritis because of the joint problems. Then they tested for lupus,’ she said and was also going through a breakup.
‘When I first got diagnosed, I had a catheter put into my stomach so that helped with my dialysis. The lupus was easily solved with medication but until the kidney disease that’s when it all went downhill.’
Despite the challenges, Shaylee maintains hope for a transplant while trying not to let the wait consume her life. Her story highlights the importance of organ donation and the significant impact it can have on people’s lives
The diagnosis also came out of the blue, but her grandmother also had lupus following a car accident.
The chronic condition has drastically impacted her social life, career, and relationships – forcing her to adapt to a new normal at a young age.
As her kidneys no longer properly function to regulate fluid in the body, Shaylee requires hemodialysis (a filtering machine) to do it for her body.
She worked full-time for as long as possible before dropping down to casual hours and becoming a puppy teacher.
The last three years has been consumed by waiting for the all-important kidney transplant phone call.
Despite the challenges, Shaylee maintains hope for a transplant while trying not to let the wait consume her life.
Her story highlights the importance of organ donation and the significant impact it can have on people’s lives.
If donation is something that you would consider, take the time to register on the Express Plus Medicare app or at donatelife.gov.au. Don’t forget to tell your family you want to be a donor – someone’s life depends on it.
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