Heysham man's brave fight to raise awareness of cystic fibrosis
At the age of just 31 Dave Fisher has been given the devastating news that he has between six and 18 months to live.
Dave was born with cystic fibrosis (CF), and as he works his way through a bucket list to create lasting memories with his family, Dave is now hoping his fight will help raise much-needed awareness of the genetic condition.
Dave said: “I was diagnosed at about six weeks old, and from then on it’s been a daily treatment that’s differed over the years.
“I have to have physio twice a day minimum – without it I am basically drowning from the inside.
“I also have tablets and use nebulisers every day. You have to generally try to be as active as you can be but without overdoing it.
“Diet is also a big thing. A male with cystic fibrosis needs 5,800 calories a day, instead of the normal 2,900.”
Dave and his wife Sarah hope that by speaking up about his plight, it will give a valuable insight into a condition which many are unaware of.
Sarah said: “It’s very under-publicised but it affects more people than you think.”
When he was younger, Dave would try to hide his condition even from close friends.
However, he is now learning to speak out about it and hopes it will help educate others about the condition, which affects almost 11,000 people in the UK.
“I am normally really shy and keep my cards close to my chest,” he said. “I was never one to talk about my condition.
“Sarah has given me more confidence to speak up more about it.
“I think my friends were relieved that they could finally talk to me about it.
“I had to grow up and realise that people just cared for me. It’s not a form of weakness, it’s just who I am.
“Now I can say if I am having a good day or a bad day.
“People don’t see me on my bad days because I am housebound. If you see me then it’s because I am having a good day.”
Sarah and Dave married at St Peter’s Church in Heysham in 2014 after moving to the area from Yorkshire with Sarah’s three sons – Tyler, 15, Harley, 10, and seven-year-old Corey – a year earlier to be closer to Sarah’s parents.
Dave’s first real scare came in 2012 when he picked up a common cold virus and his lung function plummeted to 24 per cent of what an average healthy male without CF would be expected to have.
As a result, the family decamped to Gran Canaria for a month, where the warmer climate helped Dave to recover, bringing his lung function up to 38 per cent.
However, this has dropped in recent years to around 18 per cent, leading to doctors recently breaking the news that Dave’s prognosis is now just six to 18 months.
“I would have hoped for a more steady decline so it’s been a bit of a shock because you always assume you will be OK,” Dave said.
“I will never throw in the towel, but sometimes you have got to be a bit more realistic with your goals.
“I realise that you should always seize the day because there might not be a tomorrow.
“It’s a big thing having a positive outlook.
“I am not ready to die, and I will do anything to fight against it tooth and nail.”
Standing at 5ft 7ins tall, Dave now weighs less than nine stone despite his high calorie intake.
He has developed CF-related diabetes, which is treated with insulin.
As a result of his low lung function, Dave is also tachycardic, which means his heart rate exceeds the normal resting rate.
This puts him at a higher risk of seizures and heart attacks due to the extra strain on his heart.
Just sitting down means Dave’s heart is working at its top level.
A further complication means Dave is unable to have a lung transplant.
He has non-tuberculosis mycobacterium abscessus – an infection that lives in the blood – and any new lungs would be attacked by it.
Dave now faces the onset of the winter months, which can be a difficult time for CF sufferers.
October and March are also the most dangerous months for picking up infections.
But the couple are focusing on a bucket list which they recently created, which gives them the chance to make memories for the family while ticking off some of Dave’s wishes.
And they have already made a few of Dave’s dreams come true; Dave was offered the chance to watch his beloved Huddersfield Town from a box at Wembley earlier this year, and the couple recently attended a film premiere in London.
Dave’s list of 31 challenges – one for each year of his life – also includes plans for a skydive, a trip to Ascot and a family holiday at Disneyland Paris.
“It’s a very normal bucket list,” he said. “It’s just things to do with the family mainly. The Disney trip is the most extravagant; that’s the one that would really make me smile.
“I wasn’t sure about doing a bucket list at first but after listening to what my friends had to say I saw it in a new light.
“It was really humbling to hear some of the things they said about how they were planning their futures while I couldn’t do that.
“I have never been one for taking anything off people before but I had a change of heart about it.”
Sarah said: “At the moment it’s just about ticking things off the list for us.
“We are grabbing the chance to create memories. We have done things together in the past but now we are fighting against the clock it makes you feel completely differently about things.”
Sarah, 33, is now full-time carer to Dave, who had previously been in a band and also ran a musicians’ studio until his condition took its toll.
“I feel guilty because I can’t do anything,” he said. “Sometimes I will put the bins out and get told off!”
The couple are also working on a project over the next few months which aims to highlight cystic fibrosis and give an insight into their day-to-day lives.
“There are kids with CF who don’t get to 31,” Dave said. “It’s so important to raise awareness and get further down the line to better treatment so that more children won’t have to suffer.
“I don’t think we are that far off getting treatments to manage the symptoms or even a cure.
“I have no doubt it will be too late for me but for the kids with it now, hopefully they won’t have to suffer as much.”
l To support Dave’s bucket list, go to https://www.gofundme.com/husbands-bucket-list, or to support Sarah’s Challenge Cystic Fibrosis fundraising page, go to https://www.facebook.com/challengecf/