INSIDE his spotless Corstorphine bungalow, 54-year-old Grant Crow answers the phone with a gentle voice as another call comes through from a worried patient who has just been diagnosed with the same life-threatening illness he has - pulmonary hypertension (PH).
In his calm, assured manner, with still a trace of a Canadian lilt to his accent, Grant puts the man at his ease, relieving his worst fears in the way only a fellow sufferer can and promises to send him literature on the rare lung disease - now manageable thanks, in no small part, to Grant’s efforts.
Five years after he was diagnosed with PH, Grant has thrown himself into helping fellow sufferers, spending most of his day staffing the helpline or doing paperwork for PH charity, Pulmonary Hypertension Association UK. For the father-of-three knows he is lucky to still be alive - and he owes it all to Viagra.
Grant became the first person in Europe to go on a revolutionary trial in 2002 to use the celebrated impotence treatment to treat PH, an illness difficult to diagnose and sometimes mistaken for asthma, and from which, without treatment, sufferers are given only two to three years to live. He told doctors at the specialist treatment centre at Glasgow’s Western Infirmary to put him on any trial going after he received the devastating diagnosis, following many tests to find out why he was coughing up “buckets of blood” and getting breathless at the least exertion.
The former restaurant manager, who played semi-professional ice hockey during the 28 years he lived in Canada, told the Evening News in 2005 how being a guinea pig for taking Viagra to treat PH saved his life.
It is now four-and-a-half years since Grant began taking Revatio - a drug with the same active ingredients as Viagra. Since then it has been licensed to treat other patients with PH, including a fellow PH sufferer, who lives just a mile from Grant.
Grant says the innovative treatment has given him a quality of life he couldn’t have expected otherwise. Casually dressed in a sweatshirt, slacks and slippers, surrounded by family photographs in his cheery living room, he says he’s had highs and lows on the pills but, without them, he believes he would be dead.
He says: “When I was diagnosed, without treatment, they gave me 18 months. The only other thing at that point was being fed a drug through a Hickman Line in your chest but they thought oral therapy would give me a better chance of life. Now I pop about a dozen tablets a day and that keeps me going.
“I wouldn’t be here if it wasn’t for the drug, it’s as simple as that.”
PH Awareness Week, which begins on Monday, aims to draw attention to the rare lung disorder in which the blood pressure in the pulmonary artery - which carries blood from the heart to the lungs - rises far above normal levels. The cause is unknown but around 4000 people have been diagnosed as sufferers in the UK and an estimated further 4000 are still undiagnosed.
Grant had to give up his job as a restaurant manager when he was diagnosed because he was ill and to make time for his frequent travel for tests to Glasgow’s Western Infirmary, where they specialise in PH care. Now he spends his days working at home to help the PH charity and walks to the bus stop to collect his nine-year-old daughter Amanda from school, when he feels able.
Some days however, even that is too much of an effort. “Sometimes I walk to the bus stop and have to take a wee stop. I look at the trees and maybe pretend to tie my shoe laces. I have bottles of oxygen I can take through a mask if I get really bad.”
Despite the pills, he had to be hospitalised in October 2005 for around ten days after he began to find himself completely exhausted at even minimal activity, to the point where he woke up one morning and couldn’t get out of bed.
“My wife went behind my back and rang the GP. He came and took one look at me and said he’d call an ambulance, but I have a phobia of ambulances and I said my wife would take me in the car. I was getting severe pains in my chest and I though my day had come.”
Grant was admitted to Edinburgh Royal Infirmary, where he was given lots of oxygen. “They put me on 12 to 14 litres of oxygen a minute in a huge mask. It was like a Force Ten gale blowing in my face.”
The hospital arranged for him to go to Glasgow, where he was treated at Gartnavel Royal Hospital and they put him on Tracleer tablets to bring down his blood pressure by widening the blood vessels, before sending him home.
“I’m on a high level of Revatio, but there’s still room for them to up it. There’s a few side-effects but nothing I can’t live with - your nose constantly runs and I have a lot of gastro-problems, with a burning sensation in my stomach.”
He also has poor circulation and suffers from badly swollen ankles, which look purple-black in colour, though Grant claims they are not painful.
“It’s like someone tying a load of elastic bands around your feet,” he says.
Every three months Grant has to go to Gartnavel, where they do tests, such as putting him on a walking machine for six minutes to check his fitness hasn’t deteriorated. He also gets his Viagra tablets there - he pops 21 pills throughout the day, 12 of which are Revatio - as though the drug is now licensed for PH, he can’t get it from a regular pharmacy.
Grant says it took him a long time to accept his illness and he spent ages racking his brains to think how he got it, or when it first took hold. It was particularly difficult because he was a very active person before, used to working hard and taking the dog for a walk everyday after years of “zooming around the ice”.
With early diagnosis and correct treatment almost two thirds of PH patients will survive longer than five years. But Grant says he takes a day at a time. “I’m a realist now and live for each day.”
PULMONARY hypertension (PH) is a rare lung disorder in which the blood pressure in the pulmonary artery rises far above normal levels. At the same time as the blood pressure rises, the walls of the pulmonary arteries become thicker. What causes the pulmonary arteries to thicken is not known in a lot of cases.
People with PH suffer a variety of debilitating symptoms that result in poor everyday health and quality of life, including breathlessness, dizziness, fainting, chest pains, and lethargy.
Anyone can get PH, although it tends to be more common in women in their 30s and 40s. Many patients are left untreated and for them the disease is potentially life-threatening, with an estimated survival time of less than three years from the time of diagnosis.
The new treatment, Revatio, which has the same essential ingredients as anti-impotence drug Viagra, reduces blood pressure in the pulmonary artery and improves exercise ability for patients. Pfizer undertook a six-year clinical development programme for Revatio because there was evidence that its constituent sildenafil citrate could be an effective treatment in PH.
Warfarin, a drug that stops the blood from clotting, is another drug often prescribed to patients with pulmonary hypertension because they have a tendency to form small blood clots in their lungs.
RICHARD CULLERTON, 43, also from Corstorphine, went to the doctor because he was feeling constantly lethargic and getting severely out of breath every time he walked up a hill.
He had just turned 40 and readily admits that he was unfit and carrying a few extra pounds.
But the dad-of-one, who survived testicular cancer at the age of 22, was really struggling any time he did any physical exercise.
With a heavy heart he went to his doctor - whom he thinks is the one who also treated Grant - who diagnosed him with PH. Richard says: “I was carrying a bit of weight and went for an MOT.
“The GP is a superstar for picking it up.”
The former First ScotRail train driver who now, because of his illness, works for the company in an office role, says it’s been a boost to find a fellow patient so nearby.
“To find out that someone else with PH stays within a mile of the house is unusual. He’s always very upbeat and he’s been able to give me a bit of advice. Also the Pulmonary Vascular Unit in Glasgow is first class,” he says.
The diagnosis was a second blow to the dad-of-one who got testicular cancer just after he got married. However he made a quick recovery from that and hopes he will be as lucky with PH.
“They just took one [testicle] away and sewed me up and sent me away,” he says. “The follow-up is scary though - waiting to see if it will come back.”
Thanks to Grant’s bravery in being part of the pioneering trial in the use of Viagra for PH patients, Richard has been taking the drug since it got its licence.
“I’m on Viagra and it has improved my quality of life.
“I can get along normally and it gives you a lot of pick-me-up.
“I’ve been on it a year since it was licensed and it has stabilised me,” he says.
“That’s a result. Until something else comes on they keep you on it.”
He adds cheekily: “And it puts a smile on my wife’s face.”