Getting back on track despite killer disease

David with daughters Matilda, Abby and  Megan after his 5km run
David with daughters Matilda, Abby and Megan after his 5km run
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When fit and active hospital manager David Stott was suddenly diagnosed with a severe and life threatening condition after struggling to breathe, he was too terrified to move in case the exertion led to his death.

He tells Aasma Day how he managed to motivate himself to exercise again and why he is determined to live long enough to walk all four of his daughters down the aisle.

David Stott

David Stott

Watching people going for a run as he went past in the car, David Stott would feel a pang of envy and think how he used to take the ability to exercise for granted.

David, 37, who lives in Fulwood, Preston, recalls: “I would feel jealous when I saw people running and think to myself: ‘I used to be able to do that. I wish I could do it again.’”

Dad-of-four David who has daughters Abby, 11 and Megan, seven from his first marriage and daughters Matilda, three and Lorien, eight-months, with wife Kylie, had always been fit and loved exercising.

He played football four or five times a week and ran half-marathons.

Assistant General Manager of Theatre at Royal Preston Hospital, David Stott with his family. His wife Kylie, 3 year old daughter Matilda and 6 month old daughter Lorien.

Assistant General Manager of Theatre at Royal Preston Hospital, David Stott with his family. His wife Kylie, 3 year old daughter Matilda and 6 month old daughter Lorien.

However, in 2012, he suddenly found exercising difficult.

David, who is associate general manager of theatre at Royal Preston Hospital, explains: “I suddenly found I couldn’t run 50 metres without needing to stop as I was getting very breathless.

“I then started having the same problems when I was climbing the stairs, or even talking.”

David initially thought his problems might be hay fever or asthma. But working in a hospital made him more vigilant so he decided to go and see a doctor just in case.

David underwent investigations and was referred to cardiac specialists for scans in August last year.

After having the scans, he was called admitted to hospital as an emergency and that night, specialists told him they thought he had a condition called pulmonary arterial hypertension.

David says: “I remember feeling very, very scared.

“I had expected my breathing problems to be something very minor which I would breeze through.

“The consultant sat me and my wife down and told me I had a condition called pulmonary arterial hypertension and the pressures inside my lungs were five times what they should be.

“I just remember feeling like everything was closing in and going black. It was very surreal.

“They also told me my heart was very enlarged and it was a serious condition.

“I made the mistake of looking the condition up on the internet and seeing the average life expectancy from diagnosis was two to three years.

“That’s when it became real and extremely scary.”

Pulmonary arterial hypertension is a condition that causes increased blood pressure in the pulmonary arteries and the right side of the heart. The pulmonary arteries carry blood from the heart and into the lungs.

It is a severe disease that progresses rapidly, and usually causes right heart failure. In many cases, it is fatal and leads to death.

David was admitted to Royal Preston Hospital for initial tests.

That same week, David’s wife Kylie discovered she was pregnant with their daughter Lorien.

David was then referred to a hospital in Sheffield, a specialist pulmonary hypertension centre. He was diagnosed with idiopathic pulmonary arterial hypertension, which is when the condition occurs without any identifiable cause.

He says: “I had a lot of tests in Sheffield to see how much exertion my heart could cope with.

“The condition meant the arteries in my heart had become very rigid and thick, which makes it harder for your heart to pump blood through.

“If you imagine a garden hose, when it becomes blocked, it balloons up. That was what was happening to my heart.

“After all the tests, the prognosis was still that around 25 per cent of people with idiopathic pulmonary arterial hypertension did not live past five years.”

David admits he went through some extremely bleak and dark times following his diagnosis.

David recalls: “The first three months were horrendous. I was just consumed with fear.

“As I knew the condition was all about exercise putting pressure on the heart and lungs, I was terrified of doing anything.

“I remember having vivid nightmares about dying. I dreamt about having heart attacks and not being able to move.

“It was a very difficult time because I found it hard to talk about. In my head, all I could think was: ‘What’s the point in doing anything when I might not be here tomorrow?’

“I got very close to depression and it was very hard to cope with.

“It was a very difficult time for my wife as we had a two-year-old and a baby on the way, and we didn’t know if I would be here the following year. I felt completely down and wasn’t able to support her and wasn’t allowing her to support me.

“I spent my days sat on the sofa doing nothing but playing on the Playstation for 12 or 13 hours a day.

“I just wanted to escape it all and I was too scared to do anything energetic.”

His worries were heightened as he lost his own mother Julie to breast cancer when he was just 21 and she was 48.

David says: “Having lost my own mum, I knew what the gaps were and what she missed out on in my life.

“Before my mum died, I don’t remember having done anything of significance.

“Since her death, everything I have done is to try to make her proud.

“My mum didn’t see me graduate or get married and she never had the chance to meet any of my daughters.

“The thought of the same thing happening to me terrified me.”

David says after a few months, he just suddenly seemed to snap out of his dark time and decided to get on with his life.

He explains: “With two young children at home, you don’t have the luxury of shutting yourself off. You have to face up to things.

“I was getting bored at home and wanted to get back to work.

“Going back to work was very scary at first. I hadn’t spoken to anyone from work for two months as I was getting breathless talking to people.

“I was exhausted by the end of the day.

“But the more work I did, the more my confidence returned. The more I pushed myself, the more belief I had that things were not as bad as they could be.”

David found Facebook forums with other sufferers of the same condition, and it opened up fresh hope.

David decided to do everything in his power to fight his condition and live as full a life as possible.

He says: “I didn’t want to be seen as moping around or a victim. I got myself back to work full-time. With a busy job, you don’t get time to dwell on things.”

David wanted to start exercising again, but was too scared of pushing himself in case it had an adverse effect.

When he voiced his concerns to a specialist at Blackpool, the specialist asked him: “How do you know what you can do until you push yourself?’

David says: “From that moment on, I started going to the gym again.

“I started slowly, but I found I was able to do more and more and a lot faster.

“Although there were people on the forum who had lived for a number of years with the condition, a lot of them couldn’t walk 500m and had very negative lives.

“But I found it wasn’t like that for me. The condition did not restrict my life.

“I was able to work 40 to 50 hours a week and go home to my family and I wasn’t getting breathless, blackouts or any other symptoms.

“When you are first diagnosed, you lose trust in your own body. But you just have to listen to it and re-learn it.

“The first time you get a cold, it is frightening because you don’t know if it is a cold or something more sinister.

“You have to detach yourself and realise you are still going to get colds and viruses. That can be very difficult.”

David began going to the gym and running. David says: “It wasn’t as fast as I used to run, but I was still able to exercise three times a week for over an hour.

“I remember seeing my consultant after I had done all this and he was amazed as he didn’t expect me to have achieved all that.

“I have always been a positive and focused person and decided I wanted to prove the prognosis wrong.

“I got myself back into family life and the gym and snapped out of the dark times, although I still get them from time to time.

“I still find it difficult to make future plans, as at the back of my mind, I keep thinking: ‘I might not be here.’

“However, I have set myself the challenge of making myself a positive role model for other people with this rare condition.

“I want newly diagnosed people to know there is light at the end of the tunnel.”

David saw the Preston 5km run advertised and decided he wanted to run it to raise money for the Pulmonary Hypertension Association which supports people with the condition.

David says: “They initially turned me down, as they didn’t think they could support someone with this condition to go out and exercise on that level.

“I had to negotiate with them and tell them I was able to exercise quite a bit and I was medically trained too.

“After a few days, they agreed.”

Training for the run was a case of facing his demons for David. He explains: “The first time I realised something was wrong was when I went running outside and began getting breathless.

“I had the memory of not being able to run 20m, so the thought of running 5km was daunting.”

David raised sponsorship money through friends, family and hospital colleagues.

However, two days before the run, he received devastating news.

David says: “There was a woman I had got chatting to on the forum called Hazel Roberts who had the same condition. She had always been very supportive and positive and was a huge help to me, particularly in the first few months after diagnosis.

“She had a heart and lung transplant a few days before the run and died during the surgery.

“It upset me a great deal, as the transplant was meant to be Hazel’s new beginning, but instead she died.

“I spoke to Hazel’s husband and family and decided to dedicate the run to her.

“After the run, I sent my medal and vest to them so it could be there at the funeral.”

David completed the Preston 5k in 36 minutes.

He says: “It was very scary beforehand, but once I started, I felt OK.

“There were hard times during the run, especially the uphill parts, where I felt like I was being suffocated.

“I was thrilled to complete the run in 36 minutes.

“Considering some people with this condition cannot walk up the stairs, I know this is an achievement.”

David is getting fitter and his specialist has told him the internal pressures inside his lungs have dropped and are now three times the average instead of five. He is on medication and takes 10 pills a day, including warfarin and Viagra which helps relax the heart and lungs.

David says: “This time last year, I did not expect to be alive now. But I am determined not to let this condition beat me.

“I want to do as much as I can to raise the profile of pulmonary hypertension.

“The earlier they catch it, the less effect it has on the heart.

“It was only because I was so fit before that I noticed the symptoms at such an early stage and went for help.

“My advice to anyone with symptoms of breathlessness, fainting or blacking out after minimal exertion is to see their GP – and stay away from Google!

““My prognosis is now a lot better than it was looking.

“I am now able to think about the future again.

“I am determined to still be here to walk all four of my daughters down the aisle.”

To donate to David’s fund-raising, visit www.justgiving.com/david-stott3