The Diagnosis

 

Having made it to 35 years old with just a broken arm and a dislocated elbow, I’d never really been to the doctors. Little did I know I was about to frequent myself with the GP and the local hospital more than anyone really wants to.

In April 2018, after having a blood test at the GP for something completely unrelated, my liver function results were noted as being elevated.  A couple of repeat tests were done to see if it was a one off. These continued to show a higher than expected value. I was referred to the local hospital where after a series of scans and blood tests, I was diagnosed with PSC.

This diagnosis hit hard. We’d just had a baby and were trying to deal with that only to be told that I’d need a liver transplant. This is not actually true! Less than half the people with PSC end up having a liver transplant. But then I wouldn’t be writing this for organ donor week if I was one of those people. 

Away we went from the hospital overwhelmed and struggling to make sense of it with a 2-month-old baby in a pram. Obviously “Dr Google” came out when we got home. Never a good idea!

One thing that we did find and which has helped throughout everything in my story was the PSC Support website and Facebook group! Without those people who put a huge amount of effort into the website and everything else involved and the people who post and respond to questions on the Facebook group it would be a minefield out there for not only PSC but for all rare diseases.

 

Everyday Life

 

Initially my diagnosis didn’t impact me at all. Just blood monitoring and how I felt at clinic appointments. Then Covid hit…

At the end of 2020 after dodging it for most of the year I tested positive courtesy of my daughter. Covid itself didn’t seem to hit me as bad as some people I know. It felt just like having the flu. After a couple of days of feeling rubbish, I started feeling better and returned to work after I had tested negative. Everything returned to “normal”. As normal as 2020/2021 was for people anyway!

Things then took a turn. Between February and April of 2021, I was in and out of hospital with terrible pain from cholangitis attacks and jaundice. I dropped about 20 – 30 kgs in that time and lost all appetite I had. I don’t know if the increased attacks were directly related to covid but there was a definite decline in my health after having it.

My consultant at Salford Royal decided that I should be referred to a specialist in Birmingham. So off I went for a clinic appointment a few weeks later. I left there understanding that they wanted up to date scans doing and some ‘other tests’ and that an appointment would be sent out.

Eventually the appointment came through for 15:30 on Sunday 30th May. ‘Great’ I thought. Get this scan out the way and whatever else they want to do and that’ll be it. Back to monitoring.

 

The Assessment

 

The phone rang at about 17:00 on the Wednesday before my scan. It was a nurse from the Queen Elizabeth Hospital Birmingham. They’ve got a bed ready for me.

Needless to say this was very confusing. After some questions and speaking with the doctor in the ward it turned out that I was due to have a transplant assessment! This was not what I was expecting! Guess this was the ‘other tests’ they spoke about.

So, after a 2-hour drive, what felt like every test possible and a 10 day stay they decided that a transplant was needed.

The assessment wasn’t as bad as I thought it was going to be. A lot of talking to people and various scans and blood tests but generally a lot of waiting. I was allowed to leave the hospital when I wasn’t needed for tests or conversations. After a couple of days on the ward, cabin fever started to set in for me. Being able to go outside was great.

 

The Wait

 

So back to normal life I went, except for not being able to go further than three travel time hours from the hospital. Which for someone who likes mountain biking really limits you.

After being listed I started to try and ensure that I was as fit as I could be for the operation. I continued to ride my bike and train in Jujitsu. Obviously, there were some limitations to training however at the end of last year I achieved something I thought would never happen. I was awarded my black belt.

I was waiting on the list for almost 3 years and 1 month to the day. The first year I was very anxious. Every time my phone rang, I panicked. I checked my phone constantly to make sure I had a signal, and that the ringer was on. I had the hospital bag prepared and ready to go. Everything was set up. Who would have the kids and where the dogs would go. It felt like the call never came. I attended clinic every 6 to 8 weeks and my bloods, although not good, weren’t getting worse.

I felt like I was in limbo. Ill enough to need the transplant but not ill enough to be high on the list. I was lucky. Yes, there were some restrictions but generally I was living life fully bar some fatigue. I had one cholangitis flare up the whole time I was listed and that cleared up without the need to go to hospital.

Being on the waiting list is hard. I felt very lonely. I knew some people through the PSC Support Information Day’s who’d had their transplant already. These people are amazing. Very supportive and helpful. 

Even though I knew these people I found I struggled to talk about it. I didn’t want pity with someone saying “aww, it’s okay. You’ll be fine and can do this!” And I didn’t want to burden people with how I was feeling.

The wait impacts you and those close to you hard. After a while and with help from my friends and family I realised that all I wanted to do was to rant about it. For some reason having a good moan seemed to help.

Having two children keeps you busy. Whether it’s taking one to training or the other swimming, it’s a lot. So to add this disease to all that and keeping on top of clinic appointments and how you’re feeling is very stressful. 

I didn’t let PSC stop me enjoying life as best I could!

 

Pre-Transplant Talks (June 2021)

 

There’s a large age difference between my children. So, explaining PSC and transplant to them needed very different approaches. We did our best to make sure we explained the importance of it and what would happen and didn’t hide it from them. The last thing we wanted was for them to worry. Growing up is hard enough without having to think about this all the time as well.

 

The Call

 

It’s now the 30th June 2024. We were staying with some friends round the corner from our house overnight so our eldest could have some of his friends to stay. Dogs were at my mother in laws and the youngest was with us. 

At 01:08 the phone goes: “Hi, this is Leah the liver transplant coordinator from Queen Elizabeth hospital.”

Now at this point I’d been waiting a long time and had got used to how I felt and how to deal with all my symptoms, so I was quite happy to try and convince Leah, I didn’t need it and that there must be someone who needs it more than I did. Needless to say, I was panicking a lot!

After some rational conversation it was game time! Up we got, kissed my daughter goodbye, without waking her. Popped in at home to see the eldest and check he’d not burnt the house down and then into the car south bound!

Two hours later we arrived at the hospital. Went up to Ward 726 and checked in. I’ve stayed in better hotels, but the staff there are much nicer!

I arrived on the ward at about 03:50. Bloods done, swabs taken, measurements done and off to Xray! By 05:30 I was on my way to surgery. There was no hanging about. This was happening and I was now a passenger along for the ride.

It turns out this liver had been offered to another hospital first but due to a sizing issue they couldn’t use it. So, it came to me. Hence why there was no hanging about!

 

The Recovery

 

Life is good and recovery is going well. Currently I am coming up to 11 weeks post transplant. Blood test results are looking good and I’m feeling fantastic in comparison to before.

I believe I was one of the lucky ones. My health slowly declined bit by bit. Only now looking back do I think that maybe I wasn’t as well as I thought I was.

I continue to feel good. The main hold back for me is allowing my stomach muscles to heal up fully. So many times have I just done something like sitting straight up that I would have done pre transplant and gone ‘ugh… Shouldn’t do that yet!’. So it’s taking some getting used to.

I’m returning to work next week on reduced hours and duties. As much as I’m looking forward to getting back there’s some apprehension about it. It’s been a long time since I’ve been in.

I’m eyeing up a mountain bike race next year already and will be attending the British Transplant Games maybe only as a spectator but who knows. If they stick skateboarding in, sign me up!

 

A Message about Organ Donation

 

Organ donation is a life saver and changer. Without the people and families who sign up to be an organ donor, I and many other people may not be here.

We take our health for granted and only when something goes wrong do we realise how important the people around us are.

Those that work in the NHS from the surgeons, the nurses, all the support staff and others make a huge difference. 

I will be forever thankful to my donor and their family for their decision to donate.

I now have another shot at life. With it I fully intend to give something back to the people who have helped not just me but everyone with a life changing disease.