Louis’ story: “My liver cancer was gone but I was still on the liver transplant list. Did I still need one?”

When Louis' sister was suddenly and unexpectedly diagnosed with liver failure, he immediately wanted to donate part of his liver to her and help save her life. He could never have imagined that he had liver cancer himself and would face months of gruelling treatment and a liver transplant. Thank you for sharing your story, Louis and wife Donna

Louis: It was just another normal day at work when I received a call from my sister’s husband informing me she’d been unexpectedly admitted to hospital with liver failure, she was in a declining state and would probably require a liver transplant to live.  This was a shock as no one in our family was aware of her having a problem.  So I decided to try to save my sister by donating part of my liver to her.

I’m the eldest in a large family and also the fittest, so I was the only one who could do it if I was suitable.  I started by visiting my GP for advice – she was very supportive – and to speed things along, she suggested doing some in-depth blood tests prior to contacting my sister's medical team.

Unfortunately, the results of the tests indicated that I may have haemochromatosis, a condition that is caused by too much iron or iron overload which could mean my internal organs were damaged. It’s a genetic condition which affects males in a family more than females, but we had never heard of it. My GP said if other tests confirmed this, I would not be able to be a donor to my sister, and we now had to concentrate on myself until we found out what was going on.

I had no symptoms whatsoever and was still running and working out.

I was told I had hepatocellular carcinoma and the stress this put me and my family under was immeasurable

I was referred to a specialist and underwent an ultrasound test and MRI scans etc, I was then told I had hepatocellular carcinoma (HCC cancer)! The stress that this news put me and my family through was immeasurable – my poor sister blamed herself and suffered guilt and anxiety.  Her condition had gradually started to stabilise, but now I was the one in danger.  The good news was that they had caught the cancer early.

Donna: The doctors weren’t 100 per cent sure it was HCC at first as Louis was a non-secreter. (He did not have the cancer markers in his blood) We didn’t know what that meant or whether Louis should go through the TACE (trans arterial chemoembolization treatment), but the doctors said they wouldn’t know definitely whether it was cancer until they carried out the operation and also did a biopsy.

I consulted Doctor Google, which is never the right thing to do as this confused me even more, but eventually I found the British Liver Trust website which was absolutely fantastic. I called the Nurse-led Helpline and spoke to someone who had worked on a specialist liver ward – she explained what HCC was and she set my mind at ease. She explained that HCC is like a whack-a-mole cancer, once you’ve got one tumour, there’s a higher chance you’ll get more.

As Louis is a very fit man the consultants ended up doing three TACE procedures to treat his tumours which is unusual, but they said: “As long as your body can take it, we’ll keep doing it." Unfortunately the call came after the MRI scan that the fourth tumour was inoperable and that’s when they said they wanted to do a transplant.

I phoned up the British Liver Trust again – I still wasn’t 100 per cent sure Louis had cancer, it had been confirmed on scans but not on his blood tests.

Louis was now going to be transferred to Queen Elizabeth in Birmingham for assessment as he was an ideal candidate for a full organ transplant. The British Liver Trust nurse explained that the transplant team would do their own investigations and decide if the transplant was needed and worth going ahead with.  That was reassuring.

Louis: The normal treatment for HCC is to go in through your femoral artery up into your liver and to the tumour, but because the inoperable tumour wasn’t responding, they decided to try an older form of chemo which is injected right into and around the tumour, It’s a very uncomfortable procedure as it expanded the surface area around the liver and you are fully awake during the procedure in the operating theatre.

A couple of weeks later a nurse rang, saying good news the latest MRI shows  “Your cancer’s gone” and due to the euphoria and shock. I forgot to ask any questions. I was still on the transplant list and had already been called twice to Birmingham for possible donor livers. Did I still need one?

So Donna rang the nurses at the British Liver Trust again and they advised us to ring the transplant unit and ask for my case to be reviewed at the next multidisciplinary team (MDT) meeting.

I got a call at 11.45pm a few days later telling me to get down to Birmingham as there was a liver for me.  At this stage I did not have cancer!

As I was being prepped for the transplant, I asked the medical team if I still actually needed it.  The surgeons and nurse had been in the MDT meeting when I was discussed, and they told me the top oncologist had said : “If Louis doesn’t have a transplant he could potentially die because his tumours will highly likely come back and could be more aggressive each time and could quickly go beyond the limit for a transplant!"  So I looked at the two surgeons and said: “Crack on, then!”

The British Liver Trust was my lifeline during the transplant procedure

Donna: The British Liver Trust was my lifeline during the transplant procedure. I knew I could call them if I wanted any information and they never rushed me.

They set my mind at ease and explained everything in detail.  The transplant team at the hospital were also fantastic keeping me informed during this major operation. All this was during COVID, so I found myself walking alone around the hospital grounds waiting to hear if Louis survived and if the transplant was successful.

Louis: When I woke up after the transplant the nurse explained about all the wires and pipes I was attached to and that all had gone fantastically.  Donna had told the ITC nurse at hospital that I wouldn’t say if I was in pain because I’m ex-military, and stubborn, so the nurse came in and hooked me up to a morphine drip to make sure I had enough pain relief.  She told me what my wife had said, this made me laugh ( painful).  Twenty four hours later I was moved out of ITC and on to a ward.  Unfortunately, thirty-six hours later a doctor popped his head around the door and said “You’re in acute rejection. See you in the morning.”

I spent all night panicking because the word acute sounds really serious.  If I had been thinking straight, I would have called the transplant coordinator or even the British Liver Trust because they explain everything in layman’s terms. In the morning the transplant nurse explained it was nothing to worry about and I was treated for it.

I had been put in to my own room and was managing to walk around and around it like a hamster on his wheel to help me get mobile.  I then found an app which allows you to do virtual challenges like walking up Mount Kilimanjaro, showing you on Google Earth where you are on the route by counting your steps, you could even meet others doing the same thing, it was very motivating. It really helped me.

I was discharged seven days after the transplant but had to go back a couple of days later to have my bloods checked where they then discovered my body was rejecting the liver again. I was readmitted and had another biopsy, was then prescribed steroids and another brief stay in hospital which sorted the issue.  I continue to be fully supported/monitored by the transplant consultants and haematologists at both QEH Birmingham and Aintree hospitals.

My liver function is now fantastic

Eighteen months on, the doctors are now gradually reducing my meds – unfortunately the immunosuppressants I’m on gives me a higher risk of getting cancer again because the body’s immune system can’t fight the cancerous cells as effectively so they need to find the dose that suits me best.

My liver function is now fantastic and I’m also running again. It is thanks to all the teams involved and to the fantastic gift from my donor and his family that I am alive!

I have decided to take part in the British Liver Trust’s Wing Walk to give something back and support the many people from all walks of life who develop liver-related conditions.

I checked with my doctor to make sure it was safe for me Wing Walk post-transplant and she said the only thing that I needed examining was my head!

Please do not reproduce or republish the patient stories on this website without our express written permission. If you would like to use this content please email at us media@britishlivertrust.org.uk to discuss. You can view our full websites terms and conditions here.