Beth and Katie’s story: “I’m struggling to come to terms with how quickly I deteriorated and that, technically, I lost ten days of my life’

When Beth began to experience extreme fatigue, her fiancee Katie pushed for treatment and asked constant questions of the healthcare professionals treating her. And as Beth's condition continued to deteriorate following diagnosis and she was overcome by confusion and began to lose her sight, Katie had to become her voice, brain, strength and hope. Thank you for sharing your story, Katie and Beth

Beth: I’m a very active person, but in June 2023 I started coming home on my lunchbreak for a sleep, then when I got home I’d sleep till 9pm, have my tea and a shower and go straight back to bed. I’d had insomnia, so thought I was just catching up, but when I was sleeping 12 hours every day Katie said: ‘let’s just go the doctor to make sure’.

I had blood tests and within three hours I got a phone call to say my alt levels had shot up – it should have been around 55, mine was 974 – and I needed to go back to the doctor the next day.

Katie: Three people in my life have sadly passed away due to cirrhosis of the liver. Beth’s only 26, such a fit and healthy person, she isn’t a heavy drinker and doesn’t take recreational drugs, so I was really confused. However, I was on a mission to do everything in my power to ensure this was not going to be a repeated story.

Beth: My GP doctor did some tests, but he wasn’t sure so sent me to the hospital. They hospital took bloods too and did more tests.

Katie: There was a big question mark over Beth’s paracetamol levels. The adult dose is two tablets four times a day, but if you’re under 50kg like Beth you should have half that. So the doctors thought she might have been accidentally overdosing over a long period of time.

Beth now had to have a blood test every 48 hours. She wasn’t eating and throwing up every day and when her eyes turned bright yellow, I took her back to the hospital. Her alt levels had gone up to 1,200 and bilirubin levels were in the 200s. She was admitted on July 22nd.

Beth: They put me on a NAC drip which is used to reverse paracetamol overdoses for four days. I felt sick, had a banging headache and was in pain from projectile vomiting, but they wouldn’t give me any paracetamol because they were sure it was an overdose so I just had to struggle.

Katie: The hospital kept taking bloods, doing more tests, putting her on NAC drips and giving her vitamin K, but it wasn’t working. I was convinced there was something more going on –Whenever Beth ate something, I could smell it on her body like it was trying to seep out of her skin.

Beth: After three days on the drip I was exhausted and felt I was going to die. I thought it had gone too far and I couldn’t be fixed.

Katie: A doctor then popped his head around the curtain while Beth was laid there and said: “You’re in liver failure, we’re transferring you to Leeds. Two hours later we were there.

The drive there was like no other. Beth thought she was going to die so we were talking about what songs she wanted at her funeral and that she wanted our dog to come to her grave. I kept telling her we’d get married and have babies and go on lots of holidays, but I kept my thoughts to myself and thought we probably wouldn’t get to do that.

Beth: We were sobbing our hearts out the whole hour and stuck in traffic which made it even worse. I was still sobbing when we got to Leeds Hospital, but felt at home and reassured. They kept saying you’re in the right place, you’re going to be ok. We’ve got you.

Katie: When we told the registrar about the accusation of a paracetamol overdose he said he knew it wasn’t just from looking at Beth. That filled my heart with warmth.

Beth: The doctor asked me about my family medical history, if I took any herbal supplements, recreational drugs and how much alcohol I drank. They knew it wasn’t alcohol related but wanted to get a bigger picture. They thought it was autoimmune hepatitis and a liver biopsy confirmed it.

Katie: The hospital said whatever you do, don’t Google autoimmune hepatitis, there’s a lot of false information out there because it is not widely known – the only place we should go to was the British Liver Trust. They handed me their booklet with all the information in there. I’ve found so much comfort in the British Liver Trust and have not been swallowed and consumed by all the other nonsense on the internet. It was straight to the point and they left no stone unturned when it came to displaying the knowledge in the booklet.

Beth: I was started straight away on prednisolone and got the vomiting under control. My ALT levels went down into the 200s and on the seventh day I went home. I’d be on tablets for life, but so what, I was alive and kicking.

Katie: A day after we got home Beth had a panic attack, but we didn’t think anything of it because she’d been through so much. She had a blood test the next day and that evening Beth’s consultant called saying her ALT levels had gone up. He asked her to come back for a repeat blood test the next day. It might just be a blip, but to pack a bag just in case.

At this point Beth doesn’t know much more about what happened.

I thought the steroids were making Beth snappy, but she was in liver failure.

The following morning I couldn’t get her out of bed, it was like trying to wake up an 11-year-old. I thought it was the steroids making her snappy. By 2pm she’d finally packed her bags, but when she spoke her words were so slurred and when I asked her when our anniversary was, she gave me the completely wrong date I asked many more questions to try and test her and she got very defensive and “knew what I was doing”. That’s when I knew she was in liver failure – I’d read about the symptoms on the British Liver Trust’s website. The panic attack was the start of it.

Beth: I don’t even remember waking up that day or going to bed the night before.

Katie: Beth was admitted and kept saying: “I need my glasses because I can’t see. I thought she was a bit disorientated, but she really couldn’t see because the toxins had leaked into her brain causing encephalopathy.

I’d read on the British Liver Trust website that people may not remember once they’ve recovered from encephalopathy. I knew Beth would want to know everything, so I started videoing it all. At one point she said: “I’m just accepting it now and I like being in this bed because it’s dark”. I turned the camera round to show the bright hospital lights.

Beth: It’s sad to see because I’m such a fit and healthy person normally, but it’s good to know what I was like. What I’m struggling to come to terms with is how quickly I deteriorated and that technically I lost ten days of my life.

Katie: Beth started being sick again and her urine was luminous orange/yellow, like someone had snapped a glow stick in the toilet. She was exhausted too, if the doctors asked her any questions, she would tell me to answer.

The doctor then came in and said: “We’ve got your blood test results back and you’re not getting any better. The only solution is to put you on a list for a super-urgent liver transplant, within two days (it took six days).

This all happened in three hours.

That’s when I turned to the British Liver Trust again. I knew there would be stages to Beth’s liver failure – she would get worse and eventually lose consciousness. I asked uncomfortable questions, but would rather know straight up…

“How far away is she from going into a coma?”

The doctor said three days if we didn’t get a new liver.

“If Beth goes into multiple organ failure can you do the liver transplant?”

The doctor said no.

Beth actually proposed to me while the doctor went to get the paperwork, but she can’t remember. She tried to sign the transplant consent, but couldn’t see, so I did it as her next of kin. It was the only option and seemed so extreme, but if it would save her life I had to agree.

Beth was now getting worse. When we got to the day she was supposed to fall into a coma she became quite agitated. She had really thick, stringy saliva and was projectile vomiting. She had a strong smell of ammonia. She then had a bad night – shouting for me constantly and pressing the buzzer, but not knowing or remembering why when someone came.

A liver coordinator smiled at me and said "I have good news"

Beth was assessed by an intensive care nurse on a medical ward. They tried touching her face, asking her to move her arms and she couldn’t do that. She thought we was in the month of October (it was August) and she thought the last month of the year was September. They gave the go-ahead that she must move onto the intensive care unit until a liver is accepted for her. By some sort of miracle two hours after this conversation, whilst in preparations of packing her belongings to move to intensive care  a liver coordinator popped his head through the curtain and smiled at me and said “I have good news”. I have never wanted to hug somebody so tight in all of my life. He told me they had accepted a liver for Beth but there is a lot of preparation they need to do to ensure that the liver is right for her.

He went away and she was taken to intensive care. The surgery went ahead the next day on the 11th August 2023. After her nine-hour transplant surgery, which felt like a lifetime, she was taken back to intensive care to recover. She was lucky enough to come around so quickly and was moved off the inessive care onto a ward after just 20 hours.

Beth: After the transplant I was gradually becoming more aware of everything, but it wasn’t until four days later that I could see. That morning the healthcare provider gave me a wash and asked me to choose what clothes to wear. I didn’t know what I chose because I couldn’t see them. I went back to sleep and when Katie arrived she shouted “Baby!” I turned my head and I could just see her. I sobbed my heart out for an hour because I’d not seen her for ten days!

Early one morning I got worried about my oxygen levels and called the nurse. She walked me round the ward twice and said my oxygen was fine and that I was beautiful and amazing and I’d recover.

Me and Katie had a moment whilst I was still confused with encephalopathy where we looked at my scar for the very first time in the mirror. She tells me this was such a beautiful moment and I was shocked and said “wow it is so big”, but I cannot remember it. My scar goes from my breast bone, down to my belly button and across both sides. A little like an Mercedes logo.

There are a lot of posters on the walls in the ward saying: “Get up, go for a walk”. It’s to get people to do things for themselves so they can go home. I began to eat well – I was having a feast, because I wasn’t being sick anymore. The day after I got my vision back I had breakfast on the ward, showered myself and took Katie on a ‘date’ for a full English breakfast in the hospital canteen. I wolfed that down in five seconds.

When the doctors wanted to examine me I’d be there with my belly out, proud as punch. The scar was so big, but it saved my life. I was home after a week, which the doctors and nurses said was the quickest recovery they’d ever seen.

I’m not running up and down stairs like before but I’m not crawling like a sloth either, I’m just taking it steady. I can’t bend forward, only downwards but that’s just because I’m still healing but otherwise I’m absolutely fine.

When we got home from hospital exactly 1 week after my transplant I knew what my next mission would be. Propose to the woman that has stood by me and been my rock through all of this. On the 21st August I took Katie and our daughter Lily-Mae to a special place we hold close to our hearts and I asked her to marry me.

Katie: Of course I said yes, I love her with all my heart. Life isn’t the same but has gone back to some sort of normal. Beth lost her job at the start of all this with all the time she needed off and I’ve just lost mine because they couldn’t accommodate me being off any longer caring for Beth and coming to terms with my new life. We’re both recovering from the trauma we’ve been through. We’ve decided we want to start our own businesses and do something we love because life is literally too short. We’ll be doing different businesses but in the same space so we can be together.

We thought we couldn’t get any more of each other, but we obviously can.

The Liver Team at Leeds Hospital have become our family now and we look forward to seeing them

Beth: The doctors have told me to be more cautious now. If I go to a crowded place I have to be hand sanitizing, wear a mask and wrap up if it’s cold. If it saves my life, I’m willing to do anything. The liver team at Leeds Hospital have become our family now and we look forward to seeing them at our appointments. We feel loved and protected. I am on tablets for life now. Currently I am taking 27 tablets a day. From antirejection medication, to steroids, to immunosuppressants to vitamins. There is so many. I will always live with Autoimmune Hepatitis. Even with my new liver.

Because we’re in a same sex relationship we always expected there would be a donor in our lives, but not an organ donor. Katie’s daughter is biologically hers and I’ll carry our next child, ideally, and the donor’s life will continue through them.

What advice would we give? If you feel something isn’t right, you have to fight, make sure you get answers and get to a specialist hospital as soon as you can.

Katie: If you’re the next of kin or a partner of someone who goes through something like this you’re don’t be afraid to ask the doctors questions – you have a right to know and this is the reason we can tell so much of the story from a time when Beth wasn’t compos mentis because I left no stone unturned. I’ve been her voice and brain, strength and hope – I’ve been everything through the whole journey. I’m traumatized by it as much as Beth, so speak up and tell people how you are feeling. The people who are at the patient’s bedside must not be forgotten and there is support there if you need it.

We want to break the stigma of liver conditions. We want to be an advocate for vaccinations to protect those with a lower immune system. We want to push the importance of organ donation. We want to help as many people as we can look for answers when they feel like there may not be any.

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