Most people would count themselves unlucky if they suffered the anguish of attending a handful of funerals in their lifetime.
But Suresh Vaghela endured the heartache of going to 70 funerals in just one year of friends who died as a result of contaminated blood products given to them by the NHS.
Suresh, a haemophiliac who lives in Leicester, says he feels like he is living with a ticking time bomb himself as he has HIV, Hepatitis C and was exposed to CJD due to the infected blood given to him as a treatment meant to keep him alive.
The 56-year-old, who is married to Rekha and grew up in Preston, Lancashire, says he has been to around 90 funerals in total but admits after the heavy year of attending 70 – including that of his brother – he made a decision to scale back, as the personal heartache was too difficult to cope with.
“It is like playing Russian Roulette and after a certain amount of time, you know the bullet is going to come to you”
“There came a point when we were going to so many funerals, you automatically start thinking you are going to be next,” he told HuffPost UK.
“It is like playing Russian Roulette and after a certain amount of time, you know the bullet is going to come to you.
“In that particular year, we lost my brother and so many friends who were part of the haemophiliac community.
“We started off with 1,200 co-infected haemophiliacs who were infected with both HIV and Hepatitis C by the contaminated blood – but now there are only around 200 of us left.
“It wasn’t just me but lots of others went to all these funerals as the haemophilia support network was like one big family.”
Suresh said in the mid-90s, the group decided they would just go to the funerals of “nearest and dearest” in future.
“The personal devastation was too much,” he added.
Suresh is one of thousands of haemophiliacs and other patients infected with diseases after being given contaminated blood as part of their medical treatment in the 1970s and 80s.
Suresh and his brother Praful were born with the inherited blood disorder haemophilia, which causes recurrent bleeding due to the lack of a clotting factor and after injury, it takes a long time for blood to stop flowing.
When they were younger, all Suresh and his brother could do was take extra care and they weren’t allowed to play with other children in case they got hurt. If they were injured, they were left bedridden for weeks.
However, when Suresh was around 14, they started receiving a new preventative treatment called Factor VIII, which Suresh describes as “a magical potion which changed our lives.”
Little did the brothers know how much the treatment would change their lives, as the Factor VIII was imported from the United States and the treatment was made from pools of blood donated by people including risky groups such as convicts and drug addicts, who were paid for their donations.
It was only years later, while studying for a degree in Birmingham, that Suresh was given the bombshell news that he had HIV caused by the Factor VIII.
He was told to go home and sort out any paperwork, as doctors predicted he had around three to six months to live.
While Suresh is grateful to have outlived that prognosis and still be here 30 years later, his life has been riddled with health issues and the Hepatitis C has caused the hardest ordeals.
“When doctors told us we had been infected by the contaminated blood, they did not make a big deal about the Hep C as at the time, HIV was killing lots of patients and I think they felt the HIV would kill people long before the Hepatitis C became an issue,” he said.
Years later, Suresh faced another shock diagnosis after being told he had received blood from a batch which included a donation from a patient with variant CJD.
Suresh faced the agony of losing his brother in 1995, who he was very close to and described as his “right hand man.”
Over the years, Suresh has battled major health deterioration and faced countless hospital admissions. He spoke to HuffPost UK from his hospital bed after being admitted suffering with side effects from his medication.
Suresh says not only has his health been affected, but also his future happiness as he and wife Rekha were advised by doctors not to have children. When Rekha became pregnant at one stage, they made the difficult decision to have a termination.
“The doctors gave us a choice, but it was not really a choice and they encouraged us to abort our child, as my health was deteriorating so much and Rekha could not have looked after me and a baby, especially if the baby had health problems too,” he said.
“The viruses given to me through contaminated blood have not only taken away my immediate happiness, but also my future happiness.”
As well as missing out on the joys of parenthood, Suresh says the prospect of growing old is bleak.
“At the moment, me and my wife look after my mother. She knows we are there for her.
“Parents are there for their children and then children are there for their parents.
“But when you have no child, who is going to be there for you? As we get older, we will have no kids to fall back on. We don’t have that cushion.
“The support network that children bring along with their friends, we don’t have that. We have to create our own support network. But that is life.”
After years of struggling with ill health and decades of victims campaigning for justice, Suresh is relieved the inquiry is finally happening.
One of the biggest things he believes it will do is fight the stigma around his health problems, which he says is even worse in the Asian community.
““Stigma is much worse in the Asian community. It is not something people would talk about in the family or extended family”
“Stigma is the worst part of the whole thing. If you have epilepsy or heart disease, you can talk openly about it,” he said.
“But as soon as you mentioned HIV, it would clear a room.
“Stigma is much worse in the Asian community. It is not something people would talk about in the family or extended family.
“There was already a taboo in the Asian community as they would link HIV with the gay community and you could not talk about it because of where the virus might have come from.
“Even now in 2018, they still cannot talk about it. As far as the Asian community is concerned, it is a case of burying their heads and hoping it will just go away.
“But now the inquiry is here, it is a blessing as there will be a lot more information out there and people will be able to see in black and white what we all went through.
“I think the inquiry will iron out a lot of the wrinkles in the community but the stigma will never truly go away.”
He added: “This inquiry is what we have all been waiting for and for me, it is the best thing as it will give us closure and hopefully some answers to the questions that have been hanging over us for decades.
“Many parents have felt mentally tortured as they feel every time they gave their child Factor VIII, they were effectively killing them.
“But they could only act on the information they were given at the time.
“Hopefully this inquiry will take the burden of guilt away and give people the answers they want. We want all the information on the table.
“This inquiry has come too late for many and too many people have passed away. Some people who campaigned and fought so hard and died for their cause won’t get to see justice.
“The longer this inquiry goes on, the death toll will only climb.”