Miles (11 Years Old) Failing Kidney Transplant

Miles is 11 years old, born in May 2011 the fourth child to Jo and David, he has three older sisters, Emerson, Matilda and Sadie.

He was born with post uretheral valves ‘chronic renal failure’ meaning he had a blockage in his urethra and couldn’t pass urine and as a result his kidneys and bladder were severely damaged.

He was rushed to Monash health hospital by ambulance where he underwent surgery to remove the blockage but it couldn’t undo the residual damage that had been done, and he was living with 25% kidney function.

Over the next few years he underwent multiple surgeries including vaesacostomy, ureterostomy, bladder reconstruction ..the list goes on.

The Renal specialists were taking measures to preserve and monitor Miles kidneys with medications and regular blood tests.

June 2019 Miles kidneys were giving up all together and we had to decide whether he would start dialysis or would receive a transplant, so after twelve months of testing Miles Mum (Jo) was compatible and the surgery took place in August 2020.

All was going well to begin with, Miles was on 30 tablets a day including immune suppressants and it seemed as though life might be a bit ‘normal’, but a couple of months after the surgery Miles body started rejecting the kidney.

Biopsies we’re done of the transplant and Miles was given a fluid minimum of four litres per day to keep the kidney hydrated but still the blood tests showed rejection.

Around June 2021 Miles haemoglobin dropped to 45 and he was given a blood transfusion. It was discovered that he had contracted Parvovirus and it was attacking his red blood cells. Over the next 16 months Miles was admitted to hospital every few weeks to receive blood, fluids and IVIG an antibiotic infusion to attack the virus that was infecting his bone marrow.

Our once full of life boy was always tired and aching and it was hard to watch. We had thought the kidney transplant would be the end of Miles struggles for a while but it didn’t turn out that way.

October 7th 2022 Miles had a blood test at GCUH. He was admitted that afternoon with a haemoglobin of 47 and a creatinine of 217 (a sign of rejection). This wasn’t unusual and we expected to be in for a few nights getting blood and fluid, but that wasn’t the case this time.

Upon admission Miles was struggling to breathe and was put onto oxygen. Over the next 24 hours he was moved to more breathing support and into ICU. It was discovered that he had contracted CMV a form of pneumonia that attacks immune suppressed people that not only infects the lungs, but all the cells in the body, It was in his blood and a CT scan was done to see if it’s in his brain, thankfully so far it’s not.

Miles was struggling and it was decided that he should be transferred to the Royal Childrens Hospital in Brisbane to be near his Renal team, so on Monday October 10th he was taken by ambulance to PICU at RCH. He deteriorated rapidly and was put onto breathing tube and sedated. Further tests discovered that along with the CMV and Parvovirus he was also found to have picked up PJP a fungal infection that also attacks the immune suppressed. The transplanted kidney was showing signs once again of rejection and Miles was put onto a dialysis machine to take some pressure off his body.

Emerson 16

Matilda 15

Sadie 13

All donations will be deposited into Jo John’s bank account to help cover costs of living expenses while the family is off work during this heartbreaking time.

Jo is a friend to many. She’s selfless, graceful, giving and humble. We wanted to set this up for her and her family to relieve some of the financial burden and show our support to one of the most deserving people, who is always willing to help others. Our love and thoughts are with your family Jo and brave little Miles x