Alport Syndrome is a very rare disease so all of the complications that come with it, aren’t always predicted beforehand. Elle faced unexpected complications. At 21, she became pregnant with her son. Unfortunately, following her pregnancy, her kidney function deteriorated rapidly, dropping to just 36-37%. Before this decline, Elle appeared healthy and energetic, with no signs of kidney issues.
Elle encountered additional health challenges. At 25, her vision began to deteriorate, requiring cataract surgery. By the age of 37, Elle's health took a severe downturn. Her hearing deteriorated significantly, and she experienced other unexplained health issues, including menstrual irregularities. This led to Elle having to stop her full-time work as an accountant in 2020, due to having to make so many hospital visits.
Despite her persistent efforts to seek medical attention, the doctors weren’t able to find out what was going on. It wasn't until a chance encounter with a nurse who was Elle’s friend, who promptly introduced her a specialist in female health. She conducted a test, that Elle discovered she was five months pregnant. Due to her health struggles, she wasn’t able to have her baby which led to one of the most emotional, physically, and mentally difficult times in her life. It took Elle a year to heal after this because her kidney was failing so fast but the toll this had on Elle still affects her to this day and she often thinks about the baby who’d be at school by now.
Elle's health continued to decline, nearing the point where she required dialysis. She had to leave her full-time job as an accountant to focus on her health, relying on the support of her partner and son during this challenging time.
Seeking a kidney transplant, Elle faced numerous obstacles. She wanted to bring her brother who was more than happy to be a donor to New Zealand however it was the time of COVID-19 which made everything much harder.
Elle ended up having to go to Iran to get tests done and she did so as soon as they opened the gates after the lockdown period, in July 2022. After the tests, Elle found out that her genetic condition required finding a more distant match for a kidney donor, than her family. Although her family was more than willing to donate their kidney, it was disappointing that they couldn’t and had to find a more distant match. It was then that one of Elle’s brother's friends came forward and offered to donate his kidney and provide a lifeline to Elle. Her donor is now like a brother to her.
The whole process continued to require Elle’s very resilient nature as she found out that live donor transplants weren’t allowed in her home city which meant having to travel to the capital, Tehran. This incurred even more costs and time - and having to navigate the busy city of approx. 9.5 to 12 million people each day.
The transplant process was fraught with continued difficulties. After the first week of the kidney transplant surgery, the doctors noticed that Elle’s kidney was fast failing. They had to do a biopsy and sonography, and then they realised nothing was wrong with the kidney but Elle's body was rejecting the new kidney. The medical staff put her under plasma treatment and increased the medication she was on and kept a very close eye on her
After 29 days of recovery and treatment, her kidney function had improved, allowing her to return home to New Zealand.
Back in New Zealand, Elle faced further challenges. She experienced hair loss and changes in her appearance, her appetite increased causing a weight gain. She had to navigate the complexities of post-transplant life. Despite the hardships, she remained determined to embrace her new reality and was pleased that her kidney function was going stable and doing well.
There’ve been many setbacks, including hearing loss and ongoing medical appointments but Elle has been determined to make her kidney work, especially for her son who was 21 at the time of the surgery. Her son was at university this time, away from their family, which of course made it even harder. It goes without saying that Elle’s partner and son had a very difficult time while she was away in Iran.
Again, another testament to Elle’s resilience, even though she stopped working her work as an accountant in 2020, she launched her artisan soap-making business, Elleysoap that same year. This proved to be very successful, Elle has received sales from around the world. She worked hard to do the research and source the best ingredients for the soap and in the last few months, Elle has restarted working as an accountant from home.
Elle remains grateful for her donor's generosity and is determined to make her kidney last the rest of her life.
“How wonderful you have to be to do this for someone. What an amazing act of kindness to give a piece of your body to someone - I can not thank him enough.”
Elle stays in touch with her donor with regular phone calls and was very pleased to hear that he and his partner recently had a healthy baby boy. She is very grateful that her donor recovery was only a few days in the hospital and then he has led a very healthy and active life post-transplant. She continues to tell him to look after himself and stay healthy.
Through the support of organisations like the Kidney Society, Elle found resources and guidance to navigate her post-transplant journey.
“I’m so thankful for the Kidney Society, it’s a great thing. It’s a great way to get more information especially when it comes to your exercise. Someone like Tracey coming to help me to give me exercise based on my needs is so helpful because not many personal trainers out there have this knowledge. They don’t know about transplants or kidney disease.”
She is determined to cherish her newfound health and live life to the fullest with her loved ones who she’s eternally grateful for.
“I’m so, so blessed to have a family who were there right beside me through the whole thing and whatever I needed.”
Scientists are exploring Alport Syndrome and researching more to see how they can help people with it and Elle is hoping that they can find some solutions.
Her love and taste for food is back. During the period of Elle’s health declining, she lost her passion for food and things didn’t taste like before so it’s bringing her a lot of joy to be able to enjoy cooking and having meals with her family and friends.
Elle's journey is a testament to the resilience of the human spirit, demonstrating the transformative power of love, perseverance, and gratitude in overcoming life's greatest challenges.