Thanks for helping to keep me alive
A father-of-two who needs a 24-hour-a-day oxygen supply after contracting a rare disease is giving back to the charity which has helped keep him alive.
Alan Wilkin, from Alnwick, suffers from desquamative interstitial pneumonia (DIP), which developed by unknown causes six months after he had a double lung transplant in 2011.
The 45-year-old’s condition is so unusual that medical experts from all over the world have been called to look at his case.
The disease has had a major impact on Alan’s life. He needs constant help with his breathing and cannot walk very far at any one time.
He describes himself as a ‘ticking timebomb’ and admits that life is a rollercoaster, not knowing what each day will bring.
Throughout his ordeal, Alan, who has to take around 175 tablets a day, has been supported by The Freeman Heart & Lung Transplant Association (FHLTA).
The charity is a voluntary organisation consisting of heart/lung transplant recipients, families and their supporters.
And to give something back, Alan and friends Mark Bishop, Steve Taylor, Steve McLaughlan and Chris Friend have embarked on The Grow Campaign.
For the last three months, the group, who all live at the town’s Chapel Lands, have put their razors to one side to grow their beards, to raise money for the FHLTA.
And tonight, the men will reach the end of their efforts, when they finally have their beards sheared at the town’s Shepherds Rest pub, from 7pm.
An overwhelmed Alan, who is married to Kirsten, 44, and has two children, Jake, 20, and Fern, 19, said: “I am so happy to be doing something for the FHLTA, I could burst into tears. They have kept me alive and are like a second family. I have always wanted to do something to thank them for what they have done and to help raise money towards research, but doing something like a fund-raising walk or run is a bit out of my league.
“But Chris came up with the idea of growing our beards. It seemed silly at the start, but it works and it has captured people’s imagination.”
Alan’s ordeal began a few years ago, after he was diagnosed with interstitial fibrosis in 2010, leaving him needing the life-saving transplant. But new difficulties came after the surgery.
Explaining the background to Alan’s story, Kirsten said: “Alan got swine flu in October 2009 and then it developed into secondary pneumonia, but nothing came of it.
“For quite a few months, Alan would be trailing behind when we were out on a walk.
“We used to take the Mickey out of him, saying he was unfit, but we didn’t realise that the disease was developing.
“He lost about three stone in weight and for me, that’s when I thought something was wrong. In May 2010, we were told he had interstitial fibrosis and more tests confirmed it. We were told that he was going to die if he didn’t have a transplant.”
Alan eventually had his double-lung transplant in January 2011. At first, the surgery gave him his life back, but things would take a turn for the worse.
He said: “I went back to normality after the surgery. I got out of hospital within three weeks after the transplant and I was back to work within three months. All the oxygen was taken away and I thought I had a second chance.
“But six months after the surgery, I became quite unwell again. I had some different treatments and did another lung biopsy and it came out that I had developed DIP.
“Initially they thought they would be able to control it – it is the type of lung disease which is mostly found in smokers – but I don’t smoke, plus I had new lungs.
“Still to this day, they don’t know why I developed it and they don’t know what is driving it forward. They are just trying to slow it down and that is why research is such a big part of this.
“They have brought people in from all over the world – from Canada, Sweden and South Africa – to work on the case because it is so unusual.”
DIP is considered one of the rarest of idiopathic interstitial pneumonias and Alan admits it has had a major impact, leaving him requiring a constant oxygen supply.
He said: “It is horrible. I can’t do anything I used to do. I can’t go to work and provide for my family, which is hard. My condition can change very quickly too. It is literally like living on a rollercoaster. You don’t know what each day will bring. But we have got very good family and friends and Kirsten is my rock.”
Kirsten added: “It does impact your life. We can’t do things that most couples can do. Alan can’t walk very far and he gets out of breath.
“You can’t just nip down the street; everything has to be planned to the last detail and we have to fill up the oxygen tanks and make sure that there is enough.
“You can’t live a normal life, but you do get used to it and this is now our way of life.
“There have been quite a few occasions where Alan has been on the brink of death, but he fights back.”
Despite what the family goes through on a daily basis, they remain positive.
Alan said: “There is always someone worse off than yourself. I don’t want anybody to feel sorry for me, I am not like that. We have got a good sense of humour and we are jovial people. It is the laughter that helps get us through.”
With that in mind, Alan is delighted to have grown his beard as part of The Grow Campaign. He said: “I couldn’t have done this without Chris, Mark and the two Steves. They are a great bunch of friends – they are like my brothers.”