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Jonny: A Journey like no other

I am 4 months post transplant & feel I am ready to share my story to help others. This will be hard for me, the memories of the past couple of years are still very raw and I didn’t think I would be able to speak about my experience so soon. I won't sugar coat my experience. It was the most challenging & awful thing I have ever had to encounter. Not to mention the pain it caused for my incredible wife, family & close friends. It got desperate and I got to a point I didn’t think I would make it. However, this is a story of positivity & one I hope others will read & believe there is light at the end of the tunnel.


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.

Jonny at top of a mountain

The Journey

The journey from my PSC diagnosis to transplant & then recovery is a journey like no other. The horrendous lows to the euphoric highs… Going through emotions that you have never felt before. Anger, desperation, loss, frustration, hurt, embarrassment & the biggest for me was guilt… How could I put my wife & son through this?

Everybody’s experience is different but it’s a unique experience that we all share and can all resonate with on some level that only those who have been through can truly understand. Some people will read this nodding with a smile on their face as they understand and have lived with everything I will share and others may have had a slightly better experience.

Despite the challenges & how desperately ill I got in the run up to my transplant, this is ultimately a message of hope & positivity. You will get there!

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.

Patient in a hospital bed with oxygen maskFollowing 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!

The operation/hospital

Following the feeding tube insertion in Glasgow (I was admitted following a kidney stone removal that resulted in a nasty infection that drained all the fluid out of me), the tube came out involuntarily itself on the Sunday so we arranged an emergency appointment at the transplant clinic in Edinburgh for the Tuesday where I was discharged with yet more antibiotics. The night before I was fainting, sick, diarrhoea and in really bad shape. The morning of the appointment I said to my wife I can’t make the journey. She literally bundled me in the car with a duvet & sick bag and made me go. 

Patient in ICU

Once I got to the clinic, I was sick and close to losing consciousness. Thankfully one of the main consultants who runs the show in Edinburgh seen me & imm

ediately sent me to the transplant ward and straight to High Dependency.

I was in for a number of weeks and literally wasn’t leaving without a Liver and it got so bad I was made a priority. The hospital experience was so challenging. I really struggled being away from my wife & wee boy. My wife was just incredible, she was essentially watching her husband slowly get more critically ill, work, look after our son and have to travel every other day to see me.

Her strength and the way she emotionally helped me was incredible. I owe her everything. Having to see my wife leave after a visit and only getting to see my son a handful of times was just the worst ever. I used to cry myself to sleep as I wanted to be home being a husband again and a daddy to my son. I wanted this nightmare over. I am a really strong person but this was getting the better of me. 

I got taken off the list twice due to being too unwell for surgery should a liver come available. This news was devastating at the time as your 1st thought is if you don’t get better & bounce back, that’s you. No solution to help you. The team are incredible though & would never let that happen.

I found being on the ward with others helpful as we could all speak about this unique experience and help each other when you were having a bad day. The transplant team in Edinburgh is just incredible. From the nurses to the surgeons. They are all angels and I owe them so much for helping me and getting me through this. Thankfully after 1 offer of a liver fell through I got a match and it was game on, 7 months to the day since I was listed. This was what we wanted from the start. I was so focused on my wife and son and to get home to be a dad & husband again I wasn’t going to let this get the better of me.

After a few days in ICU, I was closed up to let my small bowel rest and the transplant was complete. I went to HDU then eventually onto the ward and home 10 days after my transplant.

"I look at life differently now. I am grateful to have another chance at life."
Jonny at top of a mountain

Post transplant

I said at the beginning my experience was awful & that I wouldn’t sugar coat it. But I also said it was a story of hope & positivity. What was to come surpassed all my expectation.

I had read online people’s experience of getting a new liver and how incredible it was… Well they were right. A few days after the op everything clicked, I started to have energy, I could slowly walk again, eat myself without a tube and for the 1st time in a while could look forward.

I got home pretty quick and it just got better and better. I was so focused and determined to get my life back, my fitness back and put all this behind me. I was out pushing myself to walk, eating well and could play with my son again. I was keeping such a positive mindset throughout the recovery. 

Jonny and family at wedding

I set myself small, measurable goals and was back at the gym within 6 weeks. All of this was in line with consultants advice and most importantly what my body was capable of. I completed a long walk which ended climbing a hill at Loch Lomond (14km in total) 12 weeks after op and was back to work shortly after that. I made it to be best man at my best friend’s wedding. My bloods are completely normal, 1st time in years!

All of this seemed so unachievable when I was desperately ill and couldn’t see a way out.

I look at life differently now. I am grateful to have anot

her chance at life. All the emotions I feel now are positive. I can look forward now and plan holidays and fun things with my Family. I’ve seen my boy start primary school which was amazing.

Don’t get me wrong, there are days when all the feelings come back at once & it’s difficult to comprehend what on earth has just happened and for me. I still get anxious every time I get my bloods taken on clinic visits in case anything goes wrong. Suppose that’s only human after such a traumatic experience. 

I still feel extremely guilty that I put my wife, son and family through this. That may seem silly but it’s a feeling that will stay with me. 

These thoughts however will slowly go as time goes on and I live my life. I owe it to myself but more importantly my wife, family & friends who were an amazing support, to do everything right and make sure this goes well. Not to forget the donor’s family who gave me this chance. 

I look forward to one day sitting with my son reading this with him and talking about the crazy experience we had! He was only 4/5 throughout this so may not remember… hopefully just the park at the Glasgow hospital.

For anyone struggling, believe me, things will get better. Might not seem like it when you are living in that moment as it’s just awful but there is light at the end of the tunnel and the light is positive. The transplant teams are incredible. Your call will come and your life will rebuild from there. 

The strength your family and friends will show and help you get will be something you have never seen before. It’s extremely humbling. I hope anyone reading this will take the positives and hope from this despite the challenging experience I had. I am living my life to the full and will continue to do so.

Thank you Jonny for sharing your story.

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