The Lancashire Evening Post has today launched its “Lancashire: Giving the gift of life” campaign to urge more people to become organ donors.Today, Aasma Day talks to the family of nine-year-old Jack Johnstone who has been given extra years of life after undergoing a double lung transplant.
Learning to ride a bike is one of the simple pleasures that Jack Johnstone is looking forward to finally enjoying.
It might be something most children take for granted but it has eluded Jack so far as he has battled with cystic fibrosis all his life until he reached the point where a double lung transplant was his only hope for survival.
Jack, nine, who lives with his family in Hoghton, near Preston, underwent the transplant just weeks ago after suitable new lungs were found thanks to a donor and he has now returned home to begin his new life.
Mum Tina, 41, who is married to Kevin and also has daughter Isobelle, eight, says things had reached the point where they were told they would have faced their last Christmas with Jack had it not been for the transplant.
Tina, who is a manager at Four Seasons Healthcare, explains: “Jack had become very poorly and his lungs had deteriorated to just 34 per cent. He had been on oxygen 24 hours a day since January last year.
“He went through the assessment for a transplant at that time and specialists felt he needed to be listed but wanted to give us three months to consider the decision.
“It was a difficult decision as Jack was considerably high risk for the operation due to a bacteria he was carrying within his lungs.
“But he had worsened so much, a double lung transplant was the only option.”
Jack, who is a pupil at Farington Primary School, near Leyland, was eight months old when he was diagnosed with cystic fibrosis, a genetic condition where the lungs and digestive system become clogged with thick sticky mucus.
Jack was put on medication to keep the condition under control as well as enzymes to help break down his food.
He coped well despite taking around 20 medications a day and initially, he was able to live a normal life apart from attending routine appointments.
However, over the last few years, Jack’s condition deteriorated so much he began having oxygen overnight and was admitted to hospital every eight weeks or so because he was so poorly.
Jack had reached the stage where he needed a wheelchair as he could barely walk any distance at all without getting breathless.
In March last year, Jack was listed for an organ transplant and his family were then on tenterhooks waiting for the call telling them that matching new lungs had been found.
Tina admits Jack was terrified at the thought of having a transplant and wanted to get better so he could avoid the surgery.
She says: “We bought Jack an exercise bike in August and even though he was on oxygen 24 hours a day, he was managing to cycle 4km a day.
“Jack’s aim was to get fit enough to avoid the surgery. Even though we knew that wasn’t going to happen, in retrospect, I think he really built up his fitness and this helped him get through the transplant.”
The family had just finished their meal at 8pm on November 9 when they got the call telling them a new set of lungs had been found for Jack and that they needed to get to Great Ormond Street Hospital in London immediately.
Tina remembers: “It was all a bit chaotic and we quickly made arrangements for Isobelle to be looked after and the ambulance arrived to take us to Great Ormond Street Hospital.
“Because it was Jack’s first call for a transplant, I was half expecting the transplant not to happen as we had been told that around 75 per cent of first calls don’t result in a transplant.
“In our minds, we thought this was going to be our practice run but it ended up being the real thing.”
Jack was taken for his transplant at 2am and was taken to intensive care and 7:30am with doctors reporting the transplant surgery had been a success.
As well as the transplant being a success, Jack’s family have been told he is very lucky that the operation went ahead as since then, Great Ormond Street Hospital has suspended double lung transplants for people carrying the bacteria Jack had because of recent outcomes.
Tina says: “They told us the donor lungs were perfect and required no alteration.
“They said it was as if they had been made for Jack and they were extremely healthy lungs.”
He has not had to have any oxygen since his transplant and after a few blips including becoming ill with a virus, Jack has now been reunited with his family.
“Jack was talking and able to sit up within 48 hours of having the transplant,” Tina remembers. “He looked healthier immediately. We know this transplant is not a cure - it is an extension to Jack’s life.
“He will always have cystic fibrosis and these new lungs will not last forever.
“We were told that on average, they will last seven years.
“Although seven years might not sound that long, this figure is based on evidence from the last decade and there are transplant patients who are celebrating 25 years since their transplant.
“You have to look at things positively and we know without the transplant, this Christmas we have just had would have been our last with Jack.”
Jack has never been able to learn to ride a bike because of his breathing problems and being on oxygen and is now looking forward to finally learning to cycle.
He is also looking forward to going on sleepovers and family holidays abroad which he has not been well enough for before now.
Although it is still early in his recovery, Jack is already enjoying his new life and has tried out a bit of boxing.
He is hoping to return to school mid-February and is looking forward to seeing all his friends again.
Tina says the whole family is full of gratitude to the donor family who made the decision to donate their loved ones organs and says their kindness is always in their thoughts.
“Somebody has had to make that decision and we will never be able to express how thankful we are,” Tina says. “I have signed up as an organ donor and I can now see the direct impact organ donation can have from a personal point of view by looking at Jack.
“Once you have gone, you are not going to need your organs so if you can save someone else’s life, it is a wonderful thing to do.
“Jack’s transplant has been life changing and it is now like the start of a new life for the whole family.”
How to register as an organ donor
But more importantly, tell those closest to you that you would like to become an organ and tissue donor and then record your wishes on the donor register.
That way, when the time comes, your family and friends will know you want to be a donor to help others.
Backing for the Post’s donation campaign
SALLY JOHNSON, NHS BLOOD AND TRANSPLANT DIRECTOR OF ORGAN DONATION AND TRANSPLANTATION
“We are delighted to back this campaign by the Lancashire Evening Post which is encouraging people in the county to support organ donation.
“More than one in 10 people on the waiting list will die before they get the transplant they need.
“For some organs, the picture is significantly bleaker. More than one in four people waiting for lungs will die.
“I’d ask readers to imagine how you’d feel if someone close to you was waiting for a transplant.
“I’m sure we’d all hope an organ would become available. So shouldn’t we all pledge to be organ donors so more lives can be saved?
“If you haven’t told those closest to you that you want to be an organ donor, then please do it today.
“Tell them you want to be an organ donor and record your decision on the NHS Organ Donor Register.”
GILLIAN PARKINSON, EDITOR, LANCASHIRE EVENING POST
“We hope the people of Lancashire will support this appeal to help save lives.
“All of us have the opportunity to give someone else the chance to live after our death.
“The people of Lancashire are known for their generosity and I would urge everyone to sign up today.”
HELEN BRADLEY, BEREAVEMENT AND DONATION CO-ORDINATOR, LANCASHIRE TEACHING HOSPITALS
“Organ and tissue transplants save and enhance lives.
“Since January 2015, 264 people from Lancashire have donated their organs and tissues. Twenty have donated a kidney or part of their liver as a living donor and others have donated after their death when their family has been asked to consider donation.
“Thinking about donation in the immediacy of a death can be difficult for families especially if they have no idea of their loved ones wishes.
“We would remind everyone to tell those closest to you if you would like to become an organ and tissue donor and then record your wishes on the donor register.
“Increasing the number of people on the donor register and encouraging them to let their family and friends know their wishes will hopefully lead to those decisions being made in life being honoured after death.”