Lynda’s story: “Ursodeoxycholic Acid worked really well for around ten years – although there was cirrhosis there was no deterioration”

Lynda's 'world fell apart' when she was diagnosed with primary biliary cholangitis and when she heard the word 'cirrhosis' she thought she was going to die. After being reassured by her consultant, Lynda responded well to treatment for ten years until deterioration in her liver meant she was put on the transplant list. Thank you for sharing your story with us, Lynda 

I was put on hormone replacement therapy (HRT) in 2012 and started itching all over. My GP took me off it, but the itch continued, so he referred me to hepatology where blood tests revealed my LFT levels were deranged. After another scan, I was diagnosed with Primary Biliary Cholangitis (PBC) and my world fell apart.

Not a lot was known about PBC then and there is no cure. I’d had no symptoms before and my consultant didn’t know how long I’d had it but thought the HRT had triggered the itching. I didn’t understand where it had come from and thought cirrhosis meant there was no hope. I asked him if I was going to die and he said really clearly and firmly: “No”.

I was prescribed Ursodeoxycholic Acid (urso) which would slow the progression and would be monitored through regular scans and MRIs.

After a second opinion confirmed the diagnosis, I felt more reassured. I thought I needed to change my diet, like drinking skimmed milk instead of semi skimmed, but the second consultant said: “Just go out and live your life and don’t eat anything too fatty”.

Urso worked really well for around 10 years – scans showed that while there was cirrhosis and my liver was quite lumpy, there was no deterioration.

I’d never been a big drinker and had stopped completely a year before the diagnosis. When we retired, we created new friends whom we would meet in a pub. I told them I had an autoimmune condition and chose not to drink to not put my liver under any other pressure. They’d say: “But surely one or two every now and again won’t hurt” or give me a sideways glance when I mentioned cirrhosis. I’d reply: “No! You need to listen to what I’m telling you. Liver disease is not all drink/drugs related.” That stigma is still there, but I’ve become a lot stronger.

I was shocked when my consultant told me I needed a liver transplant. It had never been mentioned before.

By 2020 my LFTs were out of range, not by a great amount but enough to concern my consultant, and scans showed some deterioration. He contacted Nottingham Hospital where the multidisciplinary team said I needed a liver transplant. I was on my own at home when my consultant rang to tell me. I was shocked – there had never been any mention of a transplant before and, again, I thought I was going to die. Then I thought no – it would be tough, but I would deal with each stage as I came to it.

I got onto the transplant list at Addenbrooks Hospital in June 2021 and stayed on it for about 18 months. It was hard to get my head round at first – always remembering to take my phone everywhere and have a bag packed. I felt quite constricted and thought I couldn’t go anywhere, but the transplant coordinator said: “Just let us know where you’re going and be within two hours of Addenbrooks”. I snapped out of it then, realising I’ve only got one life to live.

It became more difficult towards the end though. For the last eight to 10 months I suffered from hepatic encephalopathy (HE). Some days I was fine, but on others I was nasty and aggressive to my husband and I couldn’t understand why. I would also ring him at work several times a day to ask what day it was and leave taps running and the cooker on. Sometimes I didn’t know who my daughter was. Addenbrooks recommended I stop driving for my own safety, which was very restrictive. As my liver deteriorated further, I became really fatigued and struggled to walk into the garden, but had to stay physically active to aid my recovery. In the last few weeks I struggled to do anything and could only crawl up the stairs. It had a big impact on my mental wellbeing and I spent a lot of time in tears.

I had my first transplant call on December 23 2022, but it wasn’t viable. The second was on 26 December and it went ahead on the 27th. The transplant went really well and the jaundice and HE just went, like someone had pressed a switch. I was home around ten days later and my recovery went really well too. Within the first couple of months I had to have a stent put in which was fine. My platelets then plummeted, which was due to another autoimmune condition, but stabilised with medication. I now see my team every three months and my consultant said: “You just power through – you’re resilient”. Well, who else is going to do that for me? I’m just enjoying my new life.

I absolutely love The British Liver Trust's pre and post-transplant support groups

My husband and I had a weekend away a few months after the transplant and are now away left, right and centre. It felt like we walked the whole Cornish coastline while on holiday in September 2023 and I felt so, so good. It’s all thanks to my donor – it’s what they would have wanted and I won’t let them down. The new liver gave me my life back and allowed me to meet my newest granddaughter, but I still find it very surreal. While I was so happy to have Christmas with my family, the donor was missing from their family’s Christmas table, and I was very emotional on the transplant anniversary. Until you need a transplant, I don’t think you really understand what donors do and what it means to the recipient and their family.

I found out about the British Liver Trust’s pre- and post-transplant support groups from another patient. I absolutely love them – they’re so informative. When you’re pre-transplant they help you realise you’re not the only one, other members understand what you’re going through and know exactly how you’re feeling. It was lovely to go back when I was post-transplant and share that news with my ‘liver family’ too.

If you’re waiting for a transplant, live your life, go away for weekends and do what want to on a daily basis. Don’t restrict yourself. The same applies post-transplant – live each day and let your team worry about everything else because that’s what your donor has allowed you to do.

 

 

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