20-year-old Plymouth man has year to live without new lungs
AN INSPIRATIONAL 20-year-old has been given around a year to live unless he receives a double lung transplant.
Award-winning fundraiser Jon-Paul Oxley has been on the waiting list for the lifesaving operation for 17 months.
His own lungs have been irreparably damaged by chronic chest infections caused by cystic fibrosis (CF).
He needs oxygen therapy 24 hours a day, uses a wheelchair when leaving the house and has been in hospital eight times this year alone.
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Jon-Paul, of Plympton, who is also a well-known youth football referee, told his story to back a campaign urging more people to join the NHS organ donor register.
Individuals who sign up are pledging to donate their organs and tissue after their death – which can save several lives.
The telephone call to tell Jon-Paul that lungs have become available has come four times.
Each time he has travelled by ambulance to the specialist Harefield Hospital transplant centre in Middlesex only to find the organs were not viable.
He has defied the odds since he was a child, when doctors did not expect him to live beyond the age of three.
"A transplant would save my life, and change it considerably," said Jon-Paul. "I will still have CF but it would not be so severe, so violent.
"It will help me do the things I can't do now. One of my dreams is to run around and keep up with my 20-month-old nephew Jack, to keep up with him and play football with him."
He said his mum describes the nerve-wracking wait for the call as like "sleeping on a tinderbox".
"My bags are packed and we go to bed with our mobile phones, just waiting for that call," he said.
"My motto is: be positive. Just bring on the next call, it could come at any second.
"I don't think about 'if' it will come, I keep saying 'the call will come', otherwise I would go crazy."
Jon-Paul's mum Jill Oxley, a childminder, said her son's "incredible" attitude is an inspiration.
"We understand there are people worse off than him but the doctors have said if he doesn't get a transplant he's not going to live another year," she said.
"But then they said he wasn't going to live past three, then 12, then 18. He's a fighter.
"I urge people to sign up as organ donors and help save lives like my son's."
In the past five years, Jon-Paul has spent more than half his time in hospital.
He is admitted to Honeyford ward where CF patients are treated in isolated cubicles to prevent infection.
The condition affects the internal organs, especially the lungs and digestive system, by clogging them with mucus making it hard to breathe and digest food.
It is one of the UK's most common life-threatening inherited diseases.
Caroline Whitton, Derriford Hospital cystic fibrosis specialist nurse, also backed the NHS Blood and Transplant (NHSBT) organ donor drive.
The hospital is holding an awareness drive during the week.
Ms Whitton described Jon-Paul's wait for a transplant as a "rollercoaster ride".
"He's had four sets of lungs which have not been viable when you get them to the table," she said.
Reasons include infection and suspicious lumps being found.
Ms Whitton continued: "The nature of cystic fibrosis, where the lungs are filled with thick sticky mucus that difficult to clear, means patients get infections that are hard to clear.
"It can be a vicious circle of infection where their lungs get more and more damaged. The lungs can get to the point where they are beyond repair and can't function as they should.
"We monitor patients' and when their lung function gets to around 30 per cent of what it should be for their age and height, we consider a transplant.
"With CF, it's quite hard because everybody is different and people deteriorate quickly.
"JP has amazed us with the amount he's done and how he continues to function."
Jon-Paul has featured in The Herald many times over the years for his tireless fundraising and sports achievements.
He was named a Herald Young Hero in 2010 and received the Marjorie Lynden Stannator Award for his charity work.
The devoted youngster also received a Lifetime Achievement accolade at the Pride of Plymouth awards in 2009.
He has raised more than £12,000 for the Cystic Fibrosis Trust over the years.
He has also helped raise money for the charity Post Pals which helps chronically ill young people.
Jon-Paul is a level seven football referee and has played for Plymouth Argyle disabled team.
He refereed for Devon Junior and Minor League until becoming too ill in 2010.
Jon-Paul plans to referee a special charity football match between Derriford Hospital staff on July 21 at Ridgeway School.
ORGAN DONATION: the facts.
More than 10,000 people in the UK currently need a transplant.
Of these, 1,000 each year – three a day – will die waiting as there are not enough organs available.
There are 148 people in Devon who need an organ transplant – 115 kidney, 12 kidney and pancreas, eight heart, eight liver, five lung and three pancreas.
Sadly, 28 people living in the county have died over the last four years while waiting for a transplant.
Between 55 and 85 people from the area received a transplant each year over the last four years.
Only 29 per cent of people nationwide (407,760 people) have joined the NHS Organ Donor Register.
National Transplant Week, from July 9 to 15, aims to increase awareness of organ donation and encourages more people to join the donation register. Signing up is a pledge that your organs can be used to save others’ in the event of your death.
This year’s campaign also focuses on the importance of ‘passing on’ information of individual donation wishes to family and friends so they are clear in the event of a tragedy.
Join the Organ Donor Register by:
Filling in a form online at www.organdonation.nhs.uk
Calling the NHS Donor Line on 0300 123 23 23. Lines are open 24 hours a day all year round. Calls are charged at contracted rate for local calls.
Text SAVE to 84118.
People can also join when they are registering for a driving licence, applying for a Boots Advantage card, registering at a GP surgery or registering for a European Health Insurance card (EHIC).