It is nine o’clock on a Monday morning and I have just finished doing a bit of tidying up. I have already made up my mind that I need the morning at home by myself. Yesterday was a difficult day and I need time to process the experience. I need time to write. I switch my mobile out of airport mode and wait for a message to download. It is Monday morning so there should be a text about going for a ride or walk with my friends. It is cold this morning and ice will be about so I think it will be a walk today. Sure enough the message arrives. Meet at 9.45 for a walk on the edge of the town. C is hosting coffee afterwards. Now the message is there I am less certain about missing the walk. So I debate it out.
Meeting up with friends is good because it is socialising. Socialising means I get to catch up and not feel so left out of others lives. Socialising means that I let my friends understand a bit about my life. Going for a walk is good for me, the repetitive movement, the exercise of hill walking is good. Walking means the dog can come with me, which is good for him too. It is sunny with a mostly blue sky. Again this is good for my mood, and also good for photographs since having a blue background and a low sun adds punch to pictures. Getting outside is good for me.
In many ways the walk is good for me but I know deep down that what I really want is some alone time. I’m rather socialised out after yesterday and I need to get the event straight in my head. So what happened to me? I actually find it hard to describe which seems ridiculous on one level. Right, to be factual I attended a celebratory lunch for the Scottish Liver Transplant Unit on the 25th anniversary of its first liver transplant. In that time over 1400 liver transplant has taken place literally giving a new life to those patients one of which was me. And in writing that sentence I can feel my emotions kicking off. I am on the verge of tears. Where does that come from?
It was an emotional time I guess. A seemingly perfectly healthy 25 year old suddenly falls ill and for the first time in his life he is given a home visit by a GP and given the option to go into hospital. I don’t ask for help easily but thankfully I made the right decision and take him up on to the ambulance trip. I am jaundiced and anaemic. There is concern I have an infectious disease. My kidneys are on the verge of failing and I get transferred to another hospital. A priest decides to give me the last rights without any discussion. I am too confused and tired to know what that means. But I avoid the dialysis and the blood transfusions do their job. I stabilise and within a couple of weeks I am home again to convalesce though I need to have daily blood tests.
Two weeks later I am back in hospital on the haematology ward. The state of my liver is a concern and getting worse. Bloods are taken for every test they can think of but show nothing. I sit amongst people having chemotherapy for cancers. It feels like death is all around me. A young doctor gives me a bolus of Vitamin K too quickly and I feel like my heart is going to explode. The medics can come up with no explanation for what is happening to me. But somebody thinks to contact the hepatology department and a young consultant comes to talk to me and he sees something in my eyes. He believes I have Wilson’s Disease. It’s a rare genetic disorder the makes copper accumulate in my body and can show up as rings on the cornea.
Rather disappointingly I feel, I have smudges in my eyes rather than rings but this doesn’t stop me from becoming “a must see” amongst the student doctors. It seems that Wilson disease is always on the exam papers. Every doctor knows what it is but it is so rare that even specialist liver consultants will be lucky to come across a case in their career. Even years later students would come up to me to ask if they could look at my eyes. I am a bit of a celebratory in the local medical world.
I was diagnosed but first line treatment failed and it was another three months before I was well enough to go home. I was institutionalised by that time, so the transition home was difficult for my wife and I. 1992 was a dramatic year for me. In August I got married. In October I got rushed into hospital. And unknown to me at the time, the Scottish Liver Transplant Unit was officially launched in November of the same year. It was a coincidence of course, but it seems a bit freaky that the SLTU opened up the month after my liver disease became symptomatic.
Just over seven years later I returned to be assessed for transplant. My health was deteriorating. My body was struggling to keep going with a cirrhotic liver. My ability to fight off infections was a problem as was variceal haemorrhaging. I went on the list and waited for nine months until my new liver became available. Those nine months were a nightmare. My world closed down to living one day at a time. I spent nearly as much time in hospital as I did at home. I was facing redundancy at work and number three child was on the way. There were times I couldn’t cope but somehow I kept going and luck was on my side. As was my original liver consultant, a comforting presence if ever there was one.
I am coming up to 17 years post transplant in Spring. I am a different man now. I have set the next generation of my family into the world. I am officially autistic. I see the world through a different lens these days. It is a view that doesn’t really want to go to a celebration of over six hundred people nearly all of whom are strangers. In my head though I have no choice. For half my life, the medics have kept me alive and however much I struggle with that life, I cannot ignore the gifts they have given me. For me actions speak louder than words so how can I not overcome my anxieties to pay my respects to people who showed me very visibly that my life mattered and continues to matter.
I spoke to “my” consultant at the party. He was so happy to see me and chatted so warmly to my wife and I for a while. He asked about our children. It was a theme that kept coming up in the conversations we had with the few people left from my time as a patient in the unit. I guess it is the most visible passage of time for us oldies. I am close enough in age to the doctors and nurses from 1992 that our kids are of similar ages. It seems a bit weird we have that in common. I felt so young and vulnerable back them and they seemed so experienced and composed. My last thought just as the sedation kicked in before my transplant was whether I would survive to see how my kids turned out. Well I have, though now I realise that their lives continually evolve and the incentive to see what happens to them will never end. I will die with that fear though maybe it won’t feel so pressing.
And now I don’t feel the need for tears or even the fear of being overwhelmed by emotions from past experiences. I have found my peace in writing, at least until the next anniversary comes along. Happy Anniversary SLTU. Many happy returns to you.