hepatitis c – Tom Galanis

“What If…”

Many people have sent me messages this morning, wishing me luck, sending me their thoughts, asking how I’m feeling about the much anticipated publication of the Infected Blood Inquiry report. I’m grateful. Here’s where I’m at with it all right now and I am hopeful that you’ll take the positives in the message I have put together.

It’s been almost five years since I gave my witness statement to the report, and that feels like a lifetime ago.

It’s been 2,042 days since I found out I had contracted Hepatitis C during a heart operation I had at the age of 3. For 11,858 days, I lived with a disease I had no knowledge of.

The past few years have presented a wide range of emotion and taught me a great deal about life and what it means to be alive.

In times gone by, when I’ve been given bad news or come up against a real problem, I’m a “right let’s work out how to fix this right now” kind of guy – a reaction of mind, rather than of feeling. Even when my Dad died suddenly in 2012, this was my instinct and to a large extent, I made it work for me. I put off the grief in favour of dealing with the practicalities of his death – never ideal by the way.

When I received my diagnosis, initially my modus operandi gave me this same opportunity. I had a disease. It had damaged my body. I needed to do whatever it took to get well. That’s by and large been taken care of fairly quickly. Inevitably, I’ve had years taken off my life, and whilst that’s far from ideal, I consider myself lucky from a physical standpoint. Had I known about my illness sooner, the wait for treatment would have been longer and the medicine required, more severe in its side effects. Considering the time I had Hep C for, the damage to my body wasn’t as bad as it could have been. Someone is probably to blame for this, but it can’t be helped now, so let’s crack on.

Whilst my youth was unknowingly stifled, I enjoyed it without any stigma that I and my family would have had to endure at the time. The world was very different in the 1980s and those who did physically suffer worse by contracting HIV, as well as those who had been given what was known as “non-A/non’B Hepatitis” at the time, all had to face a world that looked down on them as a result. And I have a wonderfully supportive family and friends. Two businesses, great colleagues. I get to have fun. And I’m alive. Lucky, right? Let’s just keep this show on the road.

Well yes. Every day I count myself lucky.

But also NO. Big ‘Nos’ that have stopped me in my tracks.

No, because it should never have happened.

No, because someone somewhere could have prevented it from happening or at the very least, could have owned up to it far, far sooner.

No… because I’ve lived a life, hopefully around half of which, should, would and could have been different. This cast a huge, existential shadow on me, one that my go-to method of facing adversity was simply inadequate to meet.

“If this hadn’t happened to me, what would I have been?”

“Where would I have been?”

“What would I have become?”

“I would not have met my wife. Therefore, I would not have had my children. They would not exist, if only this hadn’t have happened to me.”

“Am I to be glad this happened to me?”

“Has my entire life been a lie or, at least based on someone else’s lie?”

One of life’s lessons we are all taught as children, and repeatedly told as we grow, is not to dwell on those should have, would have, could have moments. Life’s too short for regrets.

But shit happens to us all. I used to brush it off and keep moving forward in my own, probably naive way. I have needed major help on this one though.

I’ve had to go places in psychotherapy sessions that I never envisaged, but professional support has been one of the best things I have ever done (get help, even if you think you’re good!). I have learned to face these unfathomable questions with an overarching sense of perspective that now governs a new way of being.

Day in day out, I try to live a life of reflection.

Regret comes to us all at some point, whether of our own doing or not. If you’re like me – a “million miles per hour kind of person”, do not simply plough on to try move on from life’s lows, but choose to face them. Properly. Take the time to build the skills needed for true reflection and I promise that you’ll learn a great deal about yourself in the process and your life will be more authentic and happier for it.

So whilst I will read the Inquiry Report diligently – so much work has gone in to it and I’m grateful for the redress I hope it brings to me and tens of thousand of others, I am not anticipating it will answer any of the existential questions I have had to face. Only the rest of my life and how I choose to live it can do that. And so, rather than be at Westminster today, I am lucky enough to be at my children’s sports day. Just so long as it does, life goes on.

For 33 years my life has taken a path it wasn’t supposed to.

Whilst that life has been extraordinary and full of immense joy and I wouldn’t change it one bit, in October last year I learned that it had been limited. I learned that the immense tiredness I suffer from – which I had put down to the normal life of a new parent running a business; that the aches, pains and lack of fitness – which I had put down to a naturally sedentary lifestyle and poor diet, all had a hidden cause found in an event that took place on 30th April 1986, when I was just two years old.

I was born with a ventricular septal defect, more commonly known as a hole in the heart. My parents sought the very best treatment they could afford. I was fortunate enough to be placed under the care of one of the leading cardiologists in the world and one of the world’s leading heart surgeons. I underwent surgery in one of the leading private hospitals in the world to repair the VSD and, to the relief of my parents, all had gone to plan. I knew no difference, of course, and annual check ups with this world leading cardiologist followed and aged 16, I was given the all clear to live a full and normal life.

To my parents, further relief. To me – carte blanche to do what any teenager in the 1990s did… drink to excess whenever I could get away with it. University followed and then a career in an uber-thirsty industry. It’s safe to say the drinking mantra really held true.

From my mid-teens, my ability to recover from physical exercise got progressively worse. I suffered from foot, knee and then chronic back pain. Several attempts at personal training courses and marathon preparation ended in failure as they destroyed my body and spirit. Just an unfit, overweight so-and-so who couldn’t stay the course, I told myself. A failure…

On 18th October 2018, I learned that the failure was not mine. Several weeks prior I had been laid up in bed with unusually severe joint and muscle pain – similar to those experienced with bad flu, without the headache – and – rarely for me – I sought the doctor’s help. Blood tests ensued and I was referred to a consultant haematologist via my private medical insurance on the basis of suspected haemochromatosis – a condition that sees your body keep too much iron in the blood, leading to joint pain. A further benefit to my private medical cover was more extensive tests. Whilst away on business in Lisbon, I received a call from the consultant saying that, whilst I didn’t have haemochromatosis, the tests had thrown up a surprising result.

I had Hepatitis C.

She went through common causes of the disease, all tied to person to person transfer of blood:

a) Ever shared a needle whilst partaking in drugs? No.
b) A visit to a low-brow tattoo parlour? No.
c) Homosexual sex? No.
d) Did your mother have it whilst you were in utero? No.
e) Do you share razors or toothbrushes with anyone? No.
f) Ever had a blood transfusion? Hmmm. I don’t think so, but I did have open heart surgery in 1986…

In the 1970s and 1980s, the NHS in the UK bought blood product from the United States. Large groups of paid donors were used (as many as 60,000 per batch, and including prisoners and drug addicts); it only required one infected donor to contaminate an entire batch, which would then infect all of the patients that received that material.
It took an incredibly extensive research process for me to determine whether or not I was given blood product during my surgery – fortunately I had the time and wherewithal to know who to speak to. My medical notes were not clear, but I had been told, by cardiologists practicing today and in yesteryear, that in all probability, whilst a transfusion was unlikely, I would have received blood product – product which private hospitals sourced from the NHS – as part of a cardiopulmonary bypass, which was routine for the surgery at the time. Eventually, this was confirmed by perfusion records held by the private Harley Street Clinic, where I had undergone surgery in 1986.

Hepatitis C is a virus that can infect the liver. If left untreated, it can sometimes cause serious and potentially life-threatening damage to the liver over many years.

I have had it for 33 years.

I visited a consultant hepatologist who confirmed the diagnosis and performed a fibroscan on my liver there and then. The anxiety I felt during this was horrendous.
I have fibrosis of the liver.

Fibrosis is the formation of an abnormally large amount of scar tissue in the liver, causing it to not function as it should.

On a chart of a healthy liver and a fully cirrhotic liver, my liver is just beyond halfway bad, but not life threatening for now. In my head, utter relief – I had a second chance. The reality is I have liver disease. No alcohol, an improved diet and fitness regime were the orders of the day, but the fatigue will ensue until such time as my liver recovers. That may never happen, even with lifestyle improvements.

The course of treatment for the strain of Hepatitis C I contracted was relatively straightforward, in spite of some major headline side-effects, which I fortunately avoided. 3 months of tablets through the NHS – thankfully, as the rack rate price of these pills in north of £30k if living abroad. Compared with the treatment available just 5 years ago, the process is relatively painless.

I am now 99% sure to have been cured of Hepatitis C, but I have been internally scarred for life – physically and emotionally. Knowing the happy existence you have lead has been hampered through errors made by someone or a group of people, who may very well remain nameless, is a far harder pill to swallow.

What is truly shocking though is the lack of public awareness; of public warning.

And so, as we approach World Hepatitis Day on Sunday 28th July, rather than commenting on this post or giving me sympathy (please don’t!), all I ask for is for you to share this post. It may save someone’s life.

Hepatitis C is a silent disease for most people. I was so lucky to have identified it when I did. Diagnosis is a simple blood test and the treatment, for most, is really straightforward, so don’t be afraid to go and get checked out. Whilst those who have used intravenous drugs or have had dodgy tattoos have, on the whole, been identified and cured by the NHS, I urge anyone who underwent any form of invasive surgery – even privately – in the 1970s and 1980s in the UK to demand a test from their GP, even if you have no obvious symptoms. Note – this applies even if you had surgery in a private hospital. If you or anyone you know receives pushback to this, I urge you or them to write to your/their MP to demand a public health warning is issued prior to the result of the ongoing Infected Blood Inquiry and any conclusions and recommendations it makes, which may still be a year or two away.

My life is not as it might have been. I have used the words ‘fortunate’ and ‘lucky’ many times in this post and that holds true in the life I have lead particularly as I am now improving in health. The same may not be true for millions of people in the UK and worldwide who don’t identify this disease in time. Please, please, please – no sympathy – just share this post to help find the missing millions and rid the world of this illness.

Tag: hepatitis c

What if…

My Hepatitis C Story