A little victory in my big war! Hepatitis C (Hep C) Blog-Post

Diary Post

This post is longer than my usual ramblings, but I wanted to share with you what’s been going on over the last few months, so pull up a chair and have a listen to ‘my world’

Ok, so I’ve made it onto the transplant list, which was no mean feat in itself. When I look back to the time when I was diagnosed up until this moment, it seems like I’ve travelled a very long road.

However, I never thought I’d have to prove my ‘worthiness’ to receive treatment, that’s for sure. I believed that we all paid national insurance contributions so that access was an automatic right in Britain, right? Wrong!

I’m not going to start ranting about the NHS here. I believe their policy on this is fair and just. But I want to share what the implications of this meant to me.

Let me explain. A week or so ago I was at St. James Hospital in Leeds. Sitting in front of me was a specialist nurse eyeing me calmly, whilst I was fast losing any composure I’d had and I was beginning to cry like a child.

She’d only asked me how I’d been since I last saw her. As I started to talk I could feel my emotions rising up inside of me. My eyes became glazed and I could feel a lump growing in my throat, until I found that I couldn’t utter another word.

She’d last seen me when I was first referred to the specialist liver unit at St. Jimmy’s. Up until that point I was still working (to a fashion), we’d sold our pubs, but most importantly, I was still drinking! Not as much as I had done once, admittedly, but that was more because I felt so bloody awful every time I did.

I was admitted to one of the wards and within a couple of hours of arriving I was connected to all manner of pipes, drips and monitors. My abdomen, legs and ankles had ‘blown up’ with ‘fluid’ so as a matter of urgency I was connected to a ‘drain’. They siphoned off twenty-three litres of a thick, yellowy, vile looking fluid over the course of the first day.

For me this was a huge relief. I no longer had this massive pressure around my torso and lower body that made me feel like I was about to split open at any moment. It seemed like it had actually been trying to choke me, making my breathing heavy and laboured. And now that had all gone. Relief. I felt as light as a feather and free to tackle just about anything again.

Over the course of the next few days, I was subjected to all manner of tests, scans and cardiographs. In fact, any medical test that I may need before they would even consider whether I was fit enough for a liver transplant operation. However, that was the easy part! Next up was the psychological stuff, the bit where they start to look inside your head.

This was the first time that I met the specialist nurse. Her official title was the ‘Specialist Substance Abuse Nurse’. Now, like me, you probably have visions of drug addicts or desperate alcoholics floating around in your head. I didn't consider myself to be in either of these categories and so I met the nurse with bemusement. However I knew that in order to receive any further treatment I would have to answer her questions.

She started off by asking me when was the last time that the drink? I told her that it had been at least a couple of months, this was a lie. She shuffled through some papers until she found one which she started to read. A minute or two later she let out a sigh, took off her glasses and placed them on the table in front of her. “Mr. Quill, these are the results from your most recent blood tests. According to these you are still drinking.” she exhaled as she picked up the glasses. Mr. Quill, are you aware that we operate an absolute zero tolerance policy? Are you aware that if we believe you're still drinking then we will withdraw treatment immediately?” she looked at me indignantly and waited for a reply.

I paused for a moment whilst I took stock, I felt like I had just been attacked for my way of life. “That's very easy for you to say” I decided my best form of defence was attack. “It's not been that easy. My whole world revolves around alcohol. That’s what I do, I’m the pub landlord, and I sell alcohol. When I was diagnosed with hepatitis c do you know what that did? It took my world, shook it, turned it on its head and smashed it on the floor. Now I'm left to pick up the pieces and the only constants that I have left is my family and alcohol. I lost my business, my friends, my livelihood and everything else that goes with being a licensee. I loved my job and I was good at it”.

“I got the virus when I was a kid, probably 19 or 20, when I was foolish and reckless. I dug myself out of that hole alone and built a life for myself. I have a wife, kids, I built a good business but it wasn't just a business, it was my life. Then one day I started vomiting and shitting blood all over the place. And when I wake up in hospital, my doctor tells me I've got hep c. He tells me that just about everything I've done has been for nothing. Can you imagine what that feels like? I don't wake up in the mornings, sweating and shaking, needing a drink. I never have, I drink because that's my job. True, I love having a drink as much as I love my job, but one without the other is no use.” I tell her.

As she looked at me, I could see that I had started to break down her hard exterior however, not enough to change anything. She looked troubled. “Mr. Quill, whilst I understand, as I said, we operate a zero tolerance policy on alcohol. We can't give a liver that has been donated, and watch somebody destroy it.”

At that moment I realised my life would never be the same again. She told me that my case would be heard again in six months and that during that time I would be called for random alcohol tests to ensure that I had, as I said, completely given up alcohol.

So six months on and I’m sitting in front of her trying hard to control my tears and my emotions. Not because I had given up and hit the bottle or somehow gone completely off the rails. But because I told her how, for the second time in my life, I had turned it around again. How I’d given up so many things that I had held so dear, including the booze and my way of life. I told her how, with all the pain I felt everyday and my emotions all over the place, I had built a plan for the future. I told her how this time, I’d achieved this only with the help and support of my family.

This was the point when I started to cry like a child. Tears were streaming down my face as I spoke of Mandy’s relentless support and how I just had to look at my two kids playing together for inspiration.

But more than this, I told her that for motivation in my darkest hours, I imagined how my widow would try to explain to my two little orphans why their Daddy would never be coming home.

Silence descended on the room except for my stifled bursts and then, after a few moments my nurse gathered herself and said “Well Mr. Quill, I have your test results here and it’s true to say no alcohol was detected.” I knew that they couldn’t say anything but that. “And I’m pleased to say that I have no reservations in recommending you to the transplant coordinators, however your case will, will go in front of the transplant team and it’s up to them.”

I left the hospital that day feeling physically and mentally drained. Now it was out of my hands, I’d done my bit but was it enough? Did I deserve the treatment more than the next man? My head was swimming and I knew it was going to be a full week before the panel sat to discuss cases.

That week was one of the longest I ever had had to endure. On the day of reckoning, I sat by the phone, not knowing whether to call them or wait to be called. As you can imagine, sods law ensured that everyone from double glazing to my Mother in Law called.

Eventually the phone rang and even before I got it to my ear I knew it was my case worker at the hospital. “Hi is that Ian?” “Yeah, hi, how ya’ doing?” I tried to control my trembling voice. “Yeah good thanks, Ian, I’ve got some really good news, if you can call it that” My heart lifted then sank as he spoke, what the hell did he mean by that? “Ian, I’ve just got out of a meeting for the Transplant Panel, you’ve been accepted to go on the transplant list, and I hope that’s what you wanted.” Again I was fighting back tears, but this time tears of joy. If he’d been stood in front of me now I would have been hugging and kissing him now in an explosion of euphoria. He carried on as I jumped around with a phone pressed to my ear. “It sounds like you’re pleased. I’ve got to say the panel was very impressed and proud of you. They really thought you’d come a long way. The nurse you saw last week well, I don’t know what you said to her but she loves you, couldn’t speak highly enough of you!” I think by this time hysteria had set in on both ends of the phone.

I was the only person at home so I rang Mandy and told her the great news, as you can imagine, my euphoria managed to relay what they had said my feelings about it all. Obviously she was as thrilled as I was and we would celebrate in some small way later when we were all home together.

As I got off the phone in the quiet of our home, I contemplated what this moment meant to me. I looked back at how far I’d come. My fight to get here and how, after this small victory, I could at last look forward to a future again. They say that everything happens for a reason and I believe that’s true. Maybe this is a chance to build a better future than I was going to get or expecting, maybe, after I win another small victory on another day