Alex, age 7, from Peterborough suffers from MPGN Type II, he is hooked up to a dialysis machine every night for 10 hours at a time. The responsibility on mum, Julie, is immense. Often it alarms 7 or 8 times a night because Alex is lying on the tubes, therefore stopping the fluid getting in and out of his body. “With the constant interruptions to sleep it is like having a baby again. I am always on stand -by at night, waiting for the beep to get me out of bed.”
For the time being Alex’s parents have chosen not to put him on the transplant list as the disease that he has means that his body would attack the new kidney, and it may only last for 18months. They are hoping for news of a cure so that a new kidney will last longer.
Alex was diagnosed aged 4 when his parents noticed blood in his urine. The GP was surprised as she said that usually only girls were likely to have a urine infection resulting in the presence of blood. On returning with a urine sample, which was the colour of red wine, he was sent to hospital for a blood test. Initially it was thought that Alex had a bruised kidney as he has had a fall a few days earlier from a climbing frame. The next theory was that it was post infectious nephritis. This is a complication that can follow a sore throat. Alex had not been suffering from a sore throat prior to being admitted to hospital but he was started on a course of antibiotics in hospital. He did show some signs of a cold after being in hospital for a few days so post infectious nephritis seemed to be the most likely diagnosis. Alex became very withdrawn and would not eat or drink. His mum said he was very pale and began to look like a walking skeleton. Alex failed to improve on the antibiotics. His mother voiced her concerns that he was not getting any better and was told by one doctor that “We work on probabilities and it is highly unlikely to be kidney disease because it is very rare.”
Eventually it was decided that he would have to have a biopsy done at the nearest paediatric renal unit which was in Nottingham. Alex was given the diagnosis about three weeks after becoming ill. Unfortunately for him he was the one to have the very rare kidney disease. His parents were told that they were more likely to have won the lottery than to find out that their son had this incurable chronic illness. His two sisters Georgia (12) and Emma (10) do not have kidney problems.
Alex has recently been very poorly and regularly misses school. After coming home from his latest stay in hospital he said “I am better, but I am not done.” A chronic illness like this never finishes, for Alex, there is no cure.
At times he had to have up to 10 different types of medication, including tables and medicine, 3 times a day. Today, he takes 2 tablets, 1 medicine, two medications dissolved in water and once a week his parents have to give him an injection at home.
Julie said “Alex has to live with having kidney disease every day. Not only is he connected to his dialysis machine every night but he also has to live with constraints on his diet on a daily basis. He is only allowed 800mls of fluid a day. It is especially difficult for him at parties. When he goes to parties I have to be there with him to ensure that his medication is taken and it is hard for him because he cannot just tuck into the traditional favourite party food of cheese sandwiches, crisps, chocolate and orange juice like the other children. The diet of a renal patient is very strict and although he can have some of those foods, they are tightly measured and controlled. Alex loves cheese but is restricted to only 2oz a week. He doesn’t like being different to his friends and feeling like the odd one out. When I stay with him at parties it makes him feel less grown up than his friends.”
Although Alex lives in Peterborough, since he reached end stage renal failure and began dialysis, he has all his renal treatment at hospital in Nottingham. He has made friends with other children undergoing treatment there and feels very much at home amongst the dedicated staff. There is a great team of doctors, nurses, teachers, play workers, social workers and also psychological support to help him cope with all the necessary procedures that he has to undergo. Alex has also had local help and support from the team at the Amazon Children’s Ward in Peterborough District Hospital, where he was a frequent visitor prior to reaching end stage renal failure. Alex struck up a particular friendship with Zoe, a play specialist, who helped him to master tablet swallowing. She did this by getting him to pracise with Tictacs first. Alex said “I can swallow tablets sometimes with no water now!”
He is not allowed to go swimming or have a bath because of the higher risk of getting an infection in the catheter.
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