When New Plymouth’s Adelle McBeth should have been living the life of a carefree teenager, she was instead connected to a dialysis machine every night.
Adelle was just 12 years old when she started swelling up and was diagnosed with a kidney disorder called Focal Segmental Glomerulosclerosis (FSGS) nephrotic syndrome, an autoimmune disease.
Just 18 months later, Adelle’s kidneys failed, and she was put on peritoneal dialysis, which removes waste products from a person’s blood when their kidneys can’t adequately do the job any longer.
By the age of 15, Adelle was having her first donor kidney transplant.
“It was a typical middle of the night phone call. My mum came to wake me up and I knew what it must be. I remember saying, ‘tell them I don’t want it’ and I got upset. I was frightened, but also, I had pinned all my hopes on transplant – that it was going to fix everything. I wanted to be back to normal.
“But I knew FSGS nephrotic syndrome unfortunately can reoccur in a transplant. Within 24 hours of the transplant, my kidney stopped. It eventually kicked back in to working.”
It forced Adelle into a weekly routine of flying to Auckland on a Thursday to receive treatment.
For years, Adelle (35) has been in and out of hospital, both in Taranaki and in Auckland, where she attended university, for blood tests, treatment, new medication and during times when she has been hit with serious infections because of her condition.
“No one knows why I got it. It’s autoimmune, so could happen to anyone,” says Adelle, who is in the senior executive team as Head of Operations at Augusta Capital.
That ‘anyone’ was also All Black great Jonah Lomu, who died in 2015 at the age of 40 with a similar condition to Adelle. She met the sportsman several times because of her illness and was very upset when she learned he had died.
“His car stood out, so whenever I was at Auckland hospital, if you saw his car you knew he was in the hospital or dialysing at the acute unit. The news he’d died was very difficult for me.”
Adelle’s first donor kidney lasted for 12 years. FSGS can reoccur in donor kidneys.
One of five children, Adelle’s younger brother was a match as a live kidney donor, and Adelle received her second kidney transplant in 2017.
Although still receiving regular blood tests at the renal unit at Taranaki Base Hospital, Adelle is well, in remission and championing the Taranaki Health Foundation’s Love Our Kidneys’ campaign. The campaign is to raise $500,000 for enhancements to the new purpose-built, standalone renal unit at Taranaki Base Hospital. The money raised will be used for technology and equipment to enhance the patient comfort, overall experience and quality of care.
“Kidney conditions are for life. People’s donations will make a huge difference for people with kidney conditions, to make the new renal unit a comfortable and relaxing environment – make their day feel more normal.”