Kev was diagnosed with type 2 diabetes in 2020, but received no further monitoring or lifestyle advice. In 2023 he became jaundiced and was diagnosed with MASH. While he isn’t eligible for a liver transplant, Kev and his devoted wife Suzie, say they are enjoying life more than ever and making lots of memories. Thank you, Suzie and Kev, for sharing your story
Liver disease can be there for a long time before it raises its ugly head and Kev and I want to share our story because he wasn’t aware of anything until it was too late.
Kev was diagnosed with type 2 diabetes in 2020, but he was never monitored and liver disease was not mentioned. In July 2023 while on holiday he had three episodes of shivering, rigors and although he said he didn’t feel unwell, I wasn’t happy so we came home early and went to the GP. By now Kev had started to go yellow, his liver was also quite distended and his blood tests were deranged. The GP thought it might be liver cancer and referred us straight to the medical assessment unit (MAU). He was transferred to intensive care where I work for more tests just hours later.
The following day Kev was sitting up and didn’t look ill apart from the fluid building up on his belly and legs and his yellow eyes and skin, but the consultant said he had sepsis and he didn’t know if he would get through it. They treated the sepsis with antibiotics and he was also diagnosed with MASH and cirrhosis, which they put down to his diabetes and previously being overweight. Four days later Kev was moved to the hepatology ward, but he went off his legs because they were very heavy and he became quite weak. He had a couple of ascitic drains and three weeks later he went home, but after three days his belly had grown again and he was struggling to breathe. The GP saw him at home and sent him straight back to MAU.
Kev spent another four days in ICU and was ventilated for 24 hours while they did more CT and MRI, he got sepsis again, was drained a couple of times, then went back to the hepatology ward and was discharged three weeks later. After that he would go in every two to three weeks to have his ascites drained, but didn’t want to eat so had to be NG-fed for a while which he hated.
Intense itching
He was referred to Birmingham for a transplant assessment six months later after a potential issue with his kidneys was resolved. Prior to that Kev was admitted and the doctors said: “We’re not saying no (to the transplant) because we feel we might be able to build him up enough, but we can’t say yes at the moment because he may not get through the surgery.” That’s what we expected and at least we didn’t get a no.
Prior to this assessment in March 2024 Kev started to get a bit muddled and his itching was really intense, so I took him to A&E. He was admitted with HE and was unconscious for a week. The hepatologist said he didn’t know why Kev wasn’t coming out of it and wasn’t sure he was going to. This was the third time I’d been told that he may not survive, but the first time I felt really scared.
On my birthday he did start to wake up a little bit, then he started to come round and came home after two-and-a-bit months. Since then, the only time he’s in hospital is to have his drains done and to look at him you wouldn’t think he’s ill
I now became a bit of a whipping lady trying to build him up with the protein shakes and Kev’s weight started to come back on and he was happy because he didn’t need the NG tube.
Even though everyone was fighting for a yes at the hospital Kev couldn’t have a liver transplant because his heart scan had shown too much calcification
A friend recommended him going out for a meal and eating whatever he could and that it didn’t matter how much he was able to manage. Thank God for that advice as it worked probably because it wasn’t me telling him. I tried more substantial things and if he only ate a quarter of it, that was fine. Otherwise, he would have just kept on having soup.
We kept going back to Birmingham for different tests until in November 2024 the doctors said he would be discussed at the MDT meeting to see if he was ready. A week later we got a phone call a week later saying unfortunately even though everyone was fighting for a yes at the hospital he couldn’t have a transplant because his heart scan had shown too much calcification.
We were obviously very upset but over the months we’ve talked about it a lot and maybe, in a strange way, this is the better option. Apart from his liver Kev’s fit and well so we can enjoy life. If he’d had a transplant he would have needed an extensive recovery and rehabilitation and he’d be on lots of tablets and might not even have made it through the surgery because of complications.
Most recently in October and November he’s just been on a trial to see if permanent drains would be suitable which I can look after and it will be done at home every three days, rather than going into the hospital.
Seeing some positives
We’re both passionate about raising awareness of MASLD because many people are only diagnosed when they have a blood test for an unrelated condition. We need to have more Well Man and Well Woman clinics that do blood tests that include your LFTs because if liver disease is caught early, you’ve got a bigger opportunity to get yourself treated. We need to see more about liver disease on TV too – why aren’t the powers that be advertising it on TV?
Emotionally, it’s been hell on earth and Kev is more emotional than he ever has been. Every time something isn’t right he worries that it’s his liver. When he was first diagnosed, I thought if something happens to him I don’t think I’d want to be here, but I’ve since had counselling and have been on happy pills for a long time. If I wasn’t, it would be a completely different story. 
I’ve volunteered with the British Liver Trust, will write to my MP and am spreading the word as far as I can locally too. There is a Liver Lantern support group which is run locally and they have been great. I’ve also met a few lovely people along the way who have been so supportive and I can’t thank them enough. I’ve started painting rocks to promote the Trust and put them in my local area and in the ICU garden. It’s so easy to do and I find it very therapeutic. I also did the 30 for 30 Challenge and managed to raise over £1,000 – I was only aiming for about £250 so I was gobsmacked. My little certificate now sits very proudly on the shelf.
Kev and I have been married for more than 30 years and we try to see some positives in our situation. He’s fit enough to enjoy life and we’re doing things that make us laugh and smile. Two-and-a-half years after diagnosis he’s still here and we’re making sure we’re enjoying life more than we ever have done, going away on little holidays and making memories.
I have also had a tattoo done with the word love and next to it are two butterflies denoting the two years that Kev has survived this awful disease. I can’t wait to have another butterfly added for year three. Even the artist said ‘I’ll see you next year’.
