Tegan's Story
Born with kidney disease but now thankful for her second chance at life
Tegan has lived with kidney disease her whole life and while she knows it has been difficult, and heart-breaking for her parents, she is thankful she was born with it. Tegan doesn’t know what life is like without having to manage CKD and could not imagine the shock of being diagnosed as a young adult. Tegan was born with a stiff bladder and has a mitrofanoff (a small channel that connects the bladder to a catheter outside of the body to empty urine from the bladder), which contributed to the deterioration of her kidneys until she was able to communicate the pain she was feeling as a toddler. Tegan received her first kidney transplant from her mother in April 2019, and she of course, hopes it’s her last.
Growing up Tegan was involved in managing her health and has always been quite diligent in taking medication, so she is prepared to manage her health as a young adult. Tegan is not only grateful to have a functioning kidney and how her treatment has reduced to just ensuring she is staying fit, eating well, and taking almost two-dozen pills a day, she has a renewed confidence in her body image. Tegan has finally been able to gain and keep weight – something that has positively affected her mental health as she would previously compare herself to those around her who weren’t living with CKD.
“It is a life changing experience receiving a transplant, both on the inside and outside. Kidney disease has always affected me in one way or another and now, I’m able to have the best second chance at life possible because of my mum’s kidney donation,” shared Tegan.
Tegan recalled that her mother, who was her main carer, and herself did not receive the kind of support that is available today. While Tegan had an excellent team of doctors and nurses caring for her, additional government and peer support outside of the hospital was something she felt they would have benefitted from. “I try to turn everything into a positive because this is my life,” Tegan said, “but now I’m a lot more aware of how my mom had to stop working and didn’t receive a proper pension because of that.”
Tegan has her own ‘kidney support crew’ made up of her family, friends, and partner but sometimes feels alone throughout her journey. Becoming involved with Kidney Health Australia at the end of 2019 provided Tegan with the opportunity to finally connect with people her age who are living with kidney disease through the Youth Champions, bringing her the peer support that she was missing while growing up.
“I just had my team of kidney doctors growing up, and we never had that support within the kidney community until 2019, and so I learnt a lot of things on my own over time,” Tegan explained, “but it would’ve been great to have met people my age as a young child to talk to.”
Tegan has been able to start living a more “normal” life since receiving her kidney and is determined to keep doing so – this includes giving birth to a gorgeous baby boy Archer last year. He was born at 28 weeks, but is now "5 months going strong ... a happy healthy family finally all home together".
