Before transplant I knew that I was ill.

I had loads of people telling me I was ill. Doctors. Nurses. Friends. Family. People I passed in the street. The lovely people who worked in my local shop. But that level of ill was just normal to me. 

Looking back on that time now, I can’t believe what I was living with. The daily pain. The itching. The fatigue - my gosh, the fatigue! I remember only having a few hours of ‘workable’ energy a day towards the end of it all. But even I find that hard to understand now. And I lived through it.

Because now, my normal is much better. I have what seems like endless hours of usable energy. I go whole days, weeks, and more without pain. I don’t itch. I have a fairly consistent appetite. I am sure that to the ill me, that would have been unbelievable just like how ‘ill-me’s life’ is almost unbelievable to me. 

 

The Long Road to Diagnosis

 

I was diagnosed with PSC in 2009. Just a few years after I was diagnosed with IBD (or some variant of it). At the time it was picked up through blood tests and it didn’t really impact my life… But that started to change over the next 18 months as I started to experience more and more symptoms eventually ending up with me becoming bright yellow and very sick. This all culminated with me in the JR Hospital in Oxford one day after I got married. 

Yep. My honeymoon was in a hospital 60 miles away from my husband.

During this stay I was poked and prodded as much as they could and it was ultimately decided that I would be referred to the Queen Elizabeth hospital in Birmingham to undergo transplant assessment. 2011 was meant to be my year but it wasn’t to be. 

The following 3 - 4 month period felt like a decade as I waited for the referral and then my first meeting, then waiting for the assessment appointments. It dragged on while I did my best impression of a character from The Simpsons.

I vividly remember one time when on a trip to the hospital I was hungry. Something that was very unusual for me at the time. We pulled over quickly and headed into a McDonalds for some quick food before my feeling turned to nausea again. 

I am not exaggerating to say that when I opened the door the whole place went silent. A bright yellow, gaunt man was not what everyone was expecting to see that day. 

Ultimately I went through the assessment and was denied being listed. I was starting to get less yellow and my liver function tests were improving. Everyone I spoke to expected to see me back again for another assessment in about 6 months or so, but with my levels the way they were I wasn’t able to be listed. 

6 months came and went. So did a year. 

Then two. 

Then four. 

It took 9 years for me to end up getting assessed again. 

 

Waiting in ‘Limbo’

 

That time in what I call Limbo has somewhat defined me. It was always acknowledged that I was very sick. I just didn’t meet the criteria to be listed. The UKELD score needs to be 49 or more to be listed. I always hovered around 48-51, never staying over long enough for it to matter. 

Over that decade I went from working full time, to part time, to lesser hours part time, to freelance, to setting up a business so I could set my own hours. Every 6 months or so I had to adjust my life to what my ‘new normal’ was.

This took a big toll on my mental health. My work life was slipping away. My social life was too. But eventually, through all the A&E visits, the cholangitis attacks, the changes of meds, the painkillers, the hours laying on a sofa because that is all I could do, I was going through assessment again. 

And this time I was added to the list! March 2020. It was all going to change for me. I was on the list and my life could be coming back. 

And then liver transplants were stopped due to COVID-19. 

My salvation had been ripped away just as it was offered to me. I spent the next 3 years and 3 months waiting for The Call.

 

The Call

On 16 May 2023 at 2am I got the call. I phoned my sister-in-law to let her know our dogs needed short-notice dog-sitting, called my brother and my dad to get them to spread the word, had one final shower and then jumped in the car with my husband. 

I would love to say it was simple sailing from here. But I appear to be very unlucky when it comes to medical-related situations. 

Part of the motorway was closed for maintenance so we were routed through many small villages in the middle of the night. A fun diversion any other time but at that moment it was frustrating and infuriating. 

We got to the hospital at about 4:30am. At 5 minutes to midday we were told all of the tests had been completed and the operation was going ahead. By 12:05pm I was saying goodbye to my husband outside the surgical ward.

The surgical suite was busier than I expected. I can’t remember exactly but I remember a whirlwind of activity as I was approached from all sides by people attaching me to things or wrapping wires around me. The ‘Sleepy Doctor’ gave me something to relax me - and oh boy did it. Then he pushed something and said I would start to feel tired and just go with it. 

I remember waiting and thinking, ‘who could sleep at a time like this. I’m wired!’

Then, ‘well, I guess I am a little worn out. It was an early morning.’

To, ‘I could do with a nap.’

To. ‘I’ll just shut my eyes.’

That was it. I was gone. 

 

Recovery

I don’t remember much from the ICU and what I do remember is more flashes than anything I could call a feeling or a thought. But I do remember waking up in the ward for the first time and just feeling… somewhat rested. A feeling I hadn’t had in over a decade. 

It is hard to explain how, less than 48 hours after the operation, I already felt better than I had in a decade. It was great. While it lasted. 

My new liver and I seemed to not get along so well. After a few days in the ward and with the doctors starting to talk about releasing me, I started to go yellow again and get a fever. I was going into severe rejection. 

The doctors tried to blast this with two lots of Massive Steroids but each time once I finished the course the rejection would come back. In the end I had to have something called plasmapheresis. A process where my blood was taken outside my body, washed in some sort of machine and put back into me with new plasma. 

This, while a slow process that took 5 days, worked. Since then, my new liver and I have got along much better. Or at least have come to an understanding. 

I got out of hospital about a month after I went in. Since then my liver function results have been ‘pristine’. In fact, since I started making a note of my results back in 2009, they have never been this good. 

Once I knew my health was heading down the ‘transplant path’ (not a path that the majority of PSC patients take) I tried to see transplant as the ‘thing that will sort me out’. I acknowledge that this probably isn’t the healthiest way to see it and things can go wrong - like the severe rejection I experienced; which incidentally I am only just now realising how serious it was. I now know I was very much a big worry to not only my doctors but the teams they have around them. 

 

Life with a new Liver

 

What I never really let myself think about, other than in the nebulous way of ‘I will get my life back’, was what transplant would actually mean for me. I never looked past it happening. Just that I needed to get to it. 

Since transplant I have done what I would call some notable things:

• Started walking my two (sadly one now) dogs myself again.
• Having more ‘date nights’/events with my husband, even if that is just a meal in the local pub.
• Had roughly 15 five-year-olds and 15 ten-year-olds drag me around an inflatable obstacle course and jump on top of me for a few hours. 
• Been to the theatre!
• Been on a family holiday to Rhodes.
• Been camping and canoeing on the Wye. 

All of these are events and occasions I would not have been able to have been involved in before.

I have also started to work for PSC Support - now that I can commit to hours, knowing that I have the energy to back it up, I am confident enough to return to the workplace. I still do some work for myself on the side but it is a great feeling to be able to do something each and every day. Especially because it is for this charity.

I don’t know what the future holds but the present is a hell of a lot better for me now. I’m going to keep living my life as much as I can. How much more can be thrown at me? I don’t know. But at least now I have some energy to tackle it head on.