Gareth’s story: “Organ donation really does save lives, it saved mine!”

Gareth first shared his story in 2018 to raise awareness of his experience following his diagnosis with Primary Sclerosing Cholangitis in 2016.  In May 2022, he had a liver transplant.  Here he shares an updated story.  

Gareth with his daughter in 2017

My PSC journey started around the beginning of 2016 when I began to feel tired all the time, even when I had slept well I’d wake up feeling exhausted. My daughter was only a few months old at the time so I assumed it was simply part of being a new dad.

A few months later, I had a particularly bad night’s sleep with stomach cramps and lower right back pain until eventually I was so uncomfortable I was physically sick. Thinking back now, this had probably happened on three other occassions in the previous few years. At the time I thought it was probably something I’d eaten but then in the upcoming days I went jaundice and this had never happened before.

I went to my doctor and had blood tests which showed that my liver function results were slightly higher than they should have been and I was asked to go back for more blood tests over the next few weeks. Each time the results improved so the doctor thought it had most likely been a troublesome gallstone.

A month or so later I had an ultrasound scan which confirmed my doctors suspicion, my gallbladder was full of small stones! I can still clearly remember leaving the hospital with my wife, talking about how relieved we were that it was nothing too serious and I would have my gallbladder removed and life would go back to ‘the way it was’.

I was fortunate enough to have private medical cover through my work so I decided to have the operation done as quickly as possible, privately. I was referred to a hospital in Edinburgh to meet the surgeon who wanted a scan of the bile ducts to double check that no stones were stuck because that would need to be resolved first before the gallbladder could be removed. The scan was booked there and then and within an hour the scan was done.

I went back to hospital to get the results and discuss the gallbladder operation a week later. I was on my own as we thought it would be a routine appointment but this was not the case...I was told by the surgeon that the good news was there wasn’t a stone in my bile duct but the bad news was they suspected I had a rare liver disease called Primary Sclerosing Cholangitis (PSC). I was referred to a hepatologist who specialised in PSC. The surgeon warned me not google the condition, which of course I ignored, and began googling “PSC” before I had even left the hospital car park… I read that there was no cure, a transplant would be needed, my life expectancy would be between 10-12 years and I was now at much higher risk of cancer! It was a total shock and a lot to take in.

I got home and told my wife that I was sick, one of those moments I will always remember.

On 11 August 2016 I met the hepatologist who gave me the gut wrenching news that he was certain that it was PSC as the scan showed that I had “widespread inflammation and scarring throughout my bile ducts”. He also told me to think of the positives, it wasn’t bile duct cancer of which he was 99% sure as he had discussed this with a top radiologist.

At that moment I couldn’t think of any positives, I was 31 years old, I had a wife and young baby to look after not to mention the impacts it could have on my career.

The next few months were relatively stable, until May 2017, when I began to feel unwell. The inflammation and scarring caused by the PSC had started to prevent bile from flowing freely and it was damaging my liver. I required an ERCP procedure to fit a stent to open the bile duct and improve the flow. The first two procedures failed but thankfully the third was successful. During the procedure the specialist had identified an area he was concerned with and took biopsies to check for cholangiocarinoma (bile duct cancer). An extremely stressful nine day wait followed. THANKFULLY THE BIOPSIES CAME BACK CLEAR!

The two months before the stent was fitted I was itchy, couldn’t sleep, lost a lot of weight and pretty much felt like I was going out of my mind. It was a really tough time and I often worried I’d get like that again. The stent was replaced every few months over the course of a year and it made a huge difference. Other than getting sepsis after one stent replacement procedure which required hospitalisation, I felt much better, almost normal!

There is currently no cure or treatment for PSC and this concerned me. How could I sit and wait for my health to deteriorate without actively trying to do something about it. I emailed researchers and liver specialists within the UK and Europe to find out whether I was eligible and what I needed to do to participate in their research. Thankfully, one specialist responded who was based in Edinburgh, not too far from where I live. After various blood tests and a liver biopsy to check I was eligible I started a 2 year drug trial.

After only a few weeks into the drug trial, I became unwell with excruiciating pain in my gallbladder area. I went to A&E and and ended up spending a few days in hospital being treated for Cholecystitis (inflammation of the gallbladder). Thankfully it was unrelated to the drug trial and I was allowed to continue on it. This hospital visit resulted in me meeting a Surgeon to assess whether the gallballder should be removed. The Surgeon decided the risks outweighed the rewards at that moment in time, as I was likely going to need a liver transplant in the future.

My health remained relatively stable for nearly 2 years whilst being on the drug trial. I had no other unplanned hospital admissions and even managed to walk The West Highland Way (96 miles), raising over £4000 for PSC Support. Sadly after completing the first 2 years of the drug trial, my liver function blood results started to decline.

I was told that I would be referred for liver transplant assessment. This would normally have been done over a 4-5 day period, but due to covid it was done over 2 days. It involved a lot of tests and meeting specialists and a vast amount of information to take in. My wife wasn't allowed to join me but attended (by phone) a session with the transplant co-ordinator who went through all of the risks and what to expect if I was listed. We found out at the end of the week that it had been a unanimous decision not to list me at the time, however it was a case of WHEN not IF.

Following the transplant assessment I was monitored closely and in September I received a call from my consultant (on my birthday!) that I would be listed the following week. This was due to the continuing decline of my liver function tests. I went live on the transplant list on 23 September 2021. Strangely, once listed my blood results started to improve, almost to a level where I started to think I might be taken off the waiting list but then that changed again in December when I spent a night in hospital with a suspected infection and a sudden worsening of my bilirubin.

From January 2022 my liver function tests started to deteriorate at a much faster rate than ever before. I was very noticeably jaundice and fatigued all the time but thankfully I wasn't experiencing the itch I dreaded. I visited the transplant clinic every 6-8 weeks to carry out blood tests and monitoring.

On the 16th May 2022 at 05:59 my phone rang from a mobile number I didn’t recognise. I looked at my wife and said “this is it” before taking a deep breath and answering.  As expected it was the transplant co-ordinator, telling me that a potential liver was available. I was warned that it was still very early stages and we wouldn’t know if the transplant would go ahead for a number of hours. I was asked to go to the hospital as soon as I could.

My wife and I had prepared for this day and planned for various scenarios as we wanted our daughter’s routine to feel as “normal” as possible. I said goodbye’s to my daughter which was extremely tough and emotional, and drove myself to hospital. My wife stayed with my daughter so she could take her to school before joining me a few hours later. We found out at approx 18:30 that evening that the operation would be going ahead and the next thing I remember was waking up with a breathing tube in my mouth.

A few hours after the transplant while recovering in ICU, they noticed bile in one of the drain bags. There was a possibility that it could have been a leak in which case needed to be resolved urgently. After a day of monitoring the decision was made to send me back in to theatre to reopen the transplant wound to check where the bile was coming from. It turned out to be the right decision and an alteration was made.

After 7 extremely tough days of being cared for by amazing nurses in ICU and High Dependency Unit, I was finally moved to the transplant ward where I started to improve quite quickly.

I was discharged 14 days after the transplant operation and can't thank the entire liver transplant team enough for their outstanding care and continuing support.

I’m only three months post transplant and have a long road ahead but I’m excited about my future again. I can’t wait to do more as a family, be able to go on holidays and get fit and healthy! All of which would not have been possible without the generosity of my donor and their family.

I will be forever grateful to them and don't yet have the words to fully describe how I feel other than my donor is a true hero.

If your country, like Scotland, has an organ donation ‘opt out scheme’ or you are already a registered donor please still talk about it and make your wishes known, as ultimately your family have the final say at the most difficult time.

Organ donation really does save lives, it saved mine!

You can read Gareth's original story here: Gareth's story - British Liver Trust

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