Twelve months ago, Maddie Collins was in Christchurch Hospital to have a peritoneal dialysis catheter tube removed so she could continue dialysis at home.
It was another step to keep her alive on her long journey to find the right kidney.
But, like the years of disappointment over finding it, the straight-forward procedure left Maddie ravaged by infection.
During the procedure, plastic tubing was left inside of her, an oversight that stalled her transplant process.
Since then, Maddie has been rushed to hospital twice to remove the pieces.
“In hindsight, none of this should have happened if they’d removed the piece of plastic at the very beginning,” Manson said of the affliction Maddie suffered for months.
In September last year, after about five weeks of antibiotics that did not work, Maddie was ready for surgery to remove the infected PD cuff.
“So they booked her in, she’d had her sedation, she was about to be wheeled into theatre and a young vascular-registrar came in and said ‘nope, she can’t go to theatre’.”
Maddie was sent home with more antibiotics, but returned weeks later and was rushed into surgery to remove it.
Fast-forward to April this year and Maddie was once again rushed to hospital with a bulge sticking out of her stomach.
Once removed, they were not able to sew her up, leaving a “gaping open wound” in her abdomen because there was so much pus and infection.
After surgery in April, Manson said they left the hospital so Maddie could be more comfortable at home, but had to drive back to hospital every two days for “weeks on end.”
Both infections left Maddie feeling anaemic and “really unwell,” her mother said.
In April, “she ended up needing to have blood transfusions which was frustrating because when you have a blood transfusion, it introduces new antibodies into your system, and antibodies when you want a transplant are a big deal,” Manson recalled.
Maddie was diagnosed with nephrotic syndrome, kidney disease, in 2008, but, after she did not respond to the typical treatment, her kidneys had to be removed so she could get new ones.
In 2012, she had her first transplant from her father Adam, but her body rejected it.
It also rejected the “miracle” kidney she was given in 2018, which left her with no kidneys after it was removed in 2020.
Manson has been Maddie’s full-time carer, as her other daughter, Georgia, has started nursing training.
“The hospital did file a medical misadventure,” Manson said.
However, she said she had to chase up the hospital to file the claim, then ACC had to work through their process of accepting it “which took weeks and plenty of emails from us”.
When it was accepted in May, ACC cited the treatment injury – replacing the classification of medical misadventure – as an “infected retained foreign body of a peritoneal dialysis catheter cuff”.
ACC deputy chief executive service delivery Phil Riley said assessing claims of treatment injuries could be “quite complex” and clinical experts assessed medical evidence from the treatment providers to identify the link between the treatment and injury.
“Ms Collins lodged her treatment injury claim with ACC on April 14, 2022. The claim was accepted on May 5, 2022.”
Last year, ACC received 17,953 treatment injury claims and have received 11,306 this year to date. The average time between 2017 and 2021 to reach a decision was 57 days.
A Te Whatu Ora Waitaha Canterbury spokesperson said: “A treatment injury claim is a claim to ACC to cover an injury caused [to] a patient by treatment from a registered health professional.
“In the event of a suspected treatment-related injury, our approach is to assist the patient to access the support they are entitled to.”
Manson said she was left on her own to manage the open wound, Maddie’s sickness and her hemodialysis, until the claim enabled some payment for rehabilitation, help hours and travel costs.
“Her quality of life has been really quite limited, and ... looking back, all of that lethargia and tiredness was just all this infection building up which they’d missed,” Manson said.
For Manson, keeping Maddie’s mental and physical well-being high was “top priority,” as well as making sure she accessed as much normalcy as possible.
“It’s hard right now because all of her mates are going off to university, working, travelling overseas and she’s stuck to this machine every 48 hours to stay alive.”
They are currently in the process of getting Maddie ready to be presented to the transplant committee again.
“From there, we’ll know whether or not they’re going to offer her another transplant or if that’s a life on hemodialysis.”
Maddie’s continued search for a kidney comes as a game-changing discovery in kidney transplant research was announced by Cambridge University.
On her good days, you can find Maddie outdoors, with her friends, or riding her ponies.
She has just been selected to attend the Dressage NZ young dressage rider camp and hopes to compete nationally.
“It’s really good for her to have something that is not medical, something that when she puts on her dressage jacket, nobody knows that she’s got no kidneys ... she’s just Maddie riding.”
