Jonny: A Journey like no other

The beginning and run up to the transplant

So, I was diagnosed with autoimmune hepatitis (AIH) in 2009, not long after I met my now wife. A fairly uneventful few years where I lived my life with some blips I was then diagnosed with PSC roughly in 2011. I was fairly fit & healthy when I got told so I didn’t really think much of it… My main health concern up until then was my ulcerative colitis.

I got my large bowel taken out in my early 20’s and I would pick up a few infections a year and end up in hospital for a couple of days, get antibiotics, feel great then back to living life. It wasn’t until the late 2021 I started to notice small things were not right. I was getting extremely tired a lot. My sleeping patterns weren’t quite the same and I was losing a bit of weight. I had some episodes of kidney stones which led to sepsis and my body wasn’t handling things like it used to. We all contracted COVID-19 over Christmas 2021, I had to have the treatment for those with compromised immune systems and from there my health declined.

Firstly, I thought it was just the long-covid mixed with daily life of working, going to the gym and having a 3-year-old boy. My life was 100mph and I liked it that way. Naively, with this in mind, I thought let’s book a holiday to Tenerife for some sun and that will sort me out…. How wrong was I.

Following our break, I was admitted to hospital for 3 weeks in April 2022 as my amazing consultant took one look at me in clinic and for the first time in 12 years thought ‘this isn’t you’; I was always so positive but he said I just looked so defeated. After a difficult time in the liver ward I was told at the end of the 3 weeks I had end-stage liver disease & I would have to go for assessment for a Liver transplant… It didn’t happen as quick though. I had another hospital stay (a haematoma in my leg due to being on warfarin [pulmonary embolism in 2014]) and a rough summer. I went for the assessment a year ago now and ultimately that assessment put me on the Transplant list.

October 2022

I will never forget the words the consultant said to me – “you are going to get a lot more ill before you get better” – Again, I didn’t think much of this at the time…. Boy, was he right. 

This is where everything changed. Almost as though when I got put on the list my body and Illness decided to deteriorate. I sit here emotional as I write this as it brings back the terrible memories of how desperately ill I got and the journey I had to go through to get here. 

Going on the list itself is a huge thing to take on, when’s the call going to come? Praying for it to come as you get worse by the week. Constantly thinking about it…. The whole experience can take over at times. 

The cholangitis attacks were at least twice in a week. These were awful. The uncontrollable shakes, sweats, pain, disorientation. The itching! Thankfully these were always at night so my Son never experienced these. My wife was incredible, she used to lie by my side cuddling me whilst things got so desperate I would be in tears. They would wipe you out for days. You felt so desperate & ill, I didn’t know who to turn to. I was calling the liver coordinators in Edinburgh, my consultant in Glasgow desperate for someone to help me & take this all away. Unfortunately with these attacks ‘it’s all part of it’ and ultimately until I got a transplant I had to get on with it. 

At this point I pretty much had to stop work. Thankfully my boss was incredible and a real support. I will always be thankful to him. 

I felt so low at this point… Waiting for this elusive phone call, getting worse every week and felt as though no one was helping me which was far from the truth. My consultants and the team in Edinburgh are just incredible…. It was more just a feeling of how can I get so ill and no resolution be in sight. The fatigue was crippling. I had to paint a smile on my face to take my son to nursery as I didn’t want him to see his daddy so ill. When at my worst my wife had to dress me as I just couldn’t manage. My life was upside down. I never knew you could get so ill. 

My wife throughout this was my rock. Saying that doesn’t even do her justification. Don’t think I would have got through this without her by my side to pick me up when I couldn’t. A real angel.

I felt angry. Why at 40/41 was I having to go through this? I felt ashamed at the way I looked. I was getting yellow and a pot belly due to ascites and the swollen legs. I could barely walk any distance in the late months. I was angry: my amazing busy life had hit a brick wall and I couldn’t look after myself. Angry I couldn’t play with my son & towards the end it made me go into a shell and I didn’t want to socialise or see anyone.

I was desperate & couldn’t find a way out. It’s a cruel illness where no matter what you do, lifestyle choices, eating well etc it won’t make you better.

The PSC was becoming intolerable and I was in & out of hospital every other week. My real low came when I was told I needed a tube inserted in my nose, then into my stomach to give me intravenous feed as my body was not processing any nutrients and the body needed help to get the correct calories.

Will always remember my close friend James holding my hand as I cried like a baby while the junior Dr attempted to insert the tube. Was horrendous experience. I knew things were getting bad when I needed a feeding tube. What was happening here!