The flow on effects
John Tuck is a tough man - not because he’s built like a tank, but because he’s a fighter through and through.
To say he has a high pain threshold is an understatement. Parts of his body are damaged from the results of Haemophilia.
His legs and left arm are severely damaged and even his veins display protruding scar tissue from the thousands of needles he has used over his lifetime.
John was born with severe Haemophilia A, which means he doesn’t clot – he simply bleeds and bleeds and bleeds.
Recent studies suggest that around 430 New Zealand residents have haemophilia type A and B. Females are even rarer due to only having one X chromosome, which is where the mutation occurs. John is less than one per cent of that scarily small statistic.
“I get so good at monitoring my body, because you can sometimes feel a vein twitching and the muscle will pull, so you know it is coming on,” says John.
“I can go to bed feeling fine, with all my joints and everything feeling okay, and then wake up with an ankle bleed or an elbow bleed or a muscle bleed, just spontaneously.”
His uncle died of the hereditary disease at the age of 11 when there was no treatment. His mum and her sister didn’t know they were carriers because there was no testing back then.
They found out John was a Haemophilic when, at six-months-old, he bumped his head on the side of a push chair and got a severe bruise. He was taken to the doctor and they confirmed the damage was a Haemophilia bruise.
Many would expect him to have been wrapped up in cotton wool from that point, but he was a farm boy at heart, who liked riding motorbikes, herding bulls and pushing the limits of his disease. He admits he’s paid for this often.
Small cuts on the skin were usually easily treated with enough pressure, but bleeding deeper into muscles or joints caused major pain and often permanent damage.
When he was a bit older, John was out on the farm with his dad and noticed his right ankle was bleeding. He didn’t want to interrupt his family, so he did up his boot as tight as possible and carried on working.
“That evening I said ‘sorry, you’re going to have to drive me to Auckland hospital’.”
“I suffered the consequences for that choice and it hurt like hell, but I was able to do what I could do for my family that day.”
John’s worst bleed, however, was while he was on holiday with his then wife in Australia. His ex-wife noticed that he was struggling to put sentences together and immediately got help.
“I had a brain haemorrhage,” explains John, “and they had to cut all along the edge of my forehead and into my skull to stop the bleeding and reattach the skull bone.
“The consequences were death or permanent, physical or mental damage. That’s one I should not have survived.”
Even though his bleeding was often bad, or worse than bad, John’s darkest days were during the 1980s when there was an outbreak of HIV and AIDS. He lost many of his friends to the disease.
“The HIV and AIDS era was awful,” he says. “My mate and I were equally the biggest uses of clotting factor in New Zealand over three years, when there was no testing available for clotting factor or us.
“When we were able to be tested, we were told one in three tests could be a false result.”
John had one positive result of HIV, but had to wait three months before he could take another test to confirm it.
“One night, in hospital, my mate told me how he was going to do it. I knew I was going to do it too, but I kept that to myself,” says John. “I was just tired of everything.”
“Somehow I survived, but he did not. He died around three years later from AIDS.”
John later received counselling, and the smile facade became a smile from the heart. His willingness to give other haemophiliacs the same opportunities as him never dimmed. As a result, he’s become heavily involved in the Midland Branch and Haemophilia Foundation of New Zealand.
John’s specialist at Auckland Hospital heard about a new trial for inhibitor patients called Hemlibra and told John that he had looked into it and there were little apparent side effects.
For John this was great news.
In the past, he had to inject himself every three hours when a bleed occurred until it had stopped or seek major pain relief in Auckland Hospital. Now, he only has to inject himself once a week with a prophylactic treatment to prevent bleeds from occurring.
His specialist and nurse went over to Miami to learn how to do the trial, and presented John’s recordings of his bleeds each year.
“The team over there said ‘if John Tuck can be anal enough to make this whole spreadsheet up and add all his targeted joints bleeds, he deserves to be on the trial’.”
“From my understanding I was the first one in the world to go on the stage three trial and that was in February 2016,” he says.
There are currently only three other patients on the new product in New Zealand, and as of yet, it is not approved by Pharmac. But John is pushing for it to be made available to more people.
“It’s been three years without a single bleed.” He went from having around 24 at-home bleeds a year to zero.
John’s partner cannot believe the difference it has made to him and their lives. They no longer need to carry large amounts of treatment or crutches when holidaying or catching up with friends.
“It’s a bloody miracle - Hemlibra is bloody magical. I can now walk on the beach without worrying about my body or what will happen if I step on something that could cause an ankle bleed.
“I can carry on with life. I can live my life.”