Jessica’s story: “Jess thought her liver would regenerate and never thought in a million years that she would die aged just 26”

"Jess was a beautiful girl and had everything going for her. She had all these plans, she’d graduated from university and then went on and did her Masters’ degree and was really ambitious. Her death totally destroyed our world."

We are very grateful to George, Jessica's father, for bravely sharing the story of his beloved daughter.

Jessica already had an under-active thyroid so she was having a rough time, but it was her liver that led to her being admitted to hospital at the age of 13.  She came home from school one day and said: “All my friends are saying my eyes are yellow”. I was shocked to see they were, and instinctively knew there was something seriously wrong and that we had to get Jessica to the doctors as soon as possible. Jessica was admitted immediately after the GP examined her and remained in hospital an entire month until her liver repaired itself. The doctors said it was autoimmune hepatitis and managed to control her condition through medication. We were told Jessica would be on tablets for life.

Five years later Jessica went to university. Because she was away from home the doctors thought it best to wait until after she’d finished before they changed her medication, but it never happened. Although Jessica loved Newcastle, she was very ambitious and the world was her oyster, so she wanted to go out and explore. She thought about moving to London but that proved too expensive, so she settled for Manchester. She loved it and met a boy there.

We kept in touch with Jessica by regularly ringing and texting and we’d also ask: “Have you taken your medication?” and she’d promise us she had. She was an adult, I had to trust her. But the truth of it was she did miss her medication throughout and had different lapses over the years. The main issue for her were the side-effects, such as weight gain, although Jess was under-weight if anything. She had blood tests every six months and on a couple of occasions the doctors would ask if she was taking her medication. I know she didn’t go to her hospital appointments when she should have, but that was complicated with her moving from Newcastle to Manchester. I didn’t see it as an issue because whenever she came home her GP would do blood tests and monitor things.

My youngest daughter said Jess's eyes were really yellow. I asked if she was taking her medication

I think Jess was a bit blasé about it, she just thought her liver would regenerate and it would be fine. She would have been so petrified if she had known this would be the outcome.

We went to see her as a family in June last year (2021) and that was the last time she was OK. My youngest daughter did a video call with Jess in August and her eyes were really yellow again. I asked Jess if she was taking her medication because we didn’t want to be going back into hospital again, but she said it was her other medication that was doing it. I told her to get herself to the doctor and get well.

We spent her birthday with her later that month and she told us she’d seen the doctor and he hadn’t been overly concerned. I don’t know if she was just trying to reassure us. We went back to Newcastle, but at the end of that week Jess phoned us up in tears because she was in so much pain. She spent a week in hospital and when I picked her up I thought “Why are you out of hospital?” my wife and younger daughter thought the same thing. Jess couldn’t walk very well and was taking very shallow breaths – she wasn’t fit to be discharged. She had three weeks with us at home and seemed to be getting better.

Then she persuaded us to take her down to Manchester because she was moving into a new flat and had two hospital appointments. The appointments were the only reason I agreed to take her down. She still wasn’t really well enough, but champing at the bit to get back to work. At no point did we ever think she would die, never in a million years.

Jess said the doctors had agreed to sign her off sick so she could work from home. She needed a desk so I ordered one from Argos and went down to build it. Everyone said I was mad driving all that way just to build a desk but if I hadn’t, I wouldn’t have seen how much her condition had deteriorated in such a short time and looking back now I don’t think she would have lasted much past that weekend.

While I was building the desk I watched her fill the washing machine. I think she was trying to show me she could cope but I could see how bad she was. I went to the bathroom and when I came out she was on the floor because she’d fallen over and couldn’t get back up. I was really scared and suggested she spend a few more days at home with us. I got her back to Newcastle, took her to the GP the next day and they sent her to hospital.

Jess had a stroke because her liver was bleeding and a blood clot went to her brain stem

Jess didn’t get out of hospital again and passed away three weeks later. She couldn’t move, couldn’t eat and was bed bound. She ended up having a stroke because her liver was bleeding and a blood clot went to her brain stem and did really bad damage. Everything was against her. She was moved to intensive care and was on a drip for food from then on. There was no good news, every day she got worse and I realise now we were witnessing the end of Jessica’s life. We were allowed to be by her bedside which we were really thankful for because of all the Covid restrictions.

The doctors examined her every day and said her liver was making a slight improvement, but then she went on a life support machine and had an oxygen tube in her mouth. She couldn’t talk so wrote a on white board, but it got increasingly hard to understand what she was writing.

A few days before Jessica’s last weekend the doctors told us how concerned they were and weren’t sure she would survive. We couldn’t believe it, my wife broke down. The following morning the most senior doctor told us they would be giving Jess palliative care and if she were to have a cardiac arrest they wouldn’t resuscitate her. She was on antibiotics for another virus and that was holding her liver back from getting better. Then sepsis also came into the equation, so Jess was fighting on all fronts.

"We were all by Jessica’s bedside throughout and towards the end on her last weekend they allowed more of her family and friends to be by her side. Myself, my wife, her sister Lucy, Jessica's boyfriend Andy and her best friend Taylor were all with her encouraging her, talking to her, playing her favourite songs, sharing stories and having some laughs. On her last night, the Saturday, we were all encouraged by Jessica’s responses, it looked like she was blinking in response to us and trying to open her eyes. We were all so happy thinking yes, she's improving, she's going to make it.

My wife was staying/sleeping overnight there and on Sunday morning rang me to say you best come over here now, it's not looking good"

Jessica's liver had totally gone and the doctors asked to take control of the life support machine

Jessica’s liver had totally gone and her kidneys were beginning to shut down. The doctors said that with our permission they’d take control of the life support machine and wouldn’t ask us to decide when that goes off. We needed to make sure Jessica was comfortable and not distressed, because there was a risk of her having a cardiac arrest and if she did, it wouldn’t have been nice for Jessica or for us to see either. Five hours later she passed.

My daughters mean everything to us, they’re the most precious things we have and I just can’t believe I’ve lost one of them. I think about Jessica every single day, she dominates my thoughts. Whenever she came home and we were doing something – the four of us together, that’s when I was at my happiest. Her mum’s fondest memory is of Jess smiling.

Jess was so friendly and got on with people, she loved socialising, going out to the pictures, restaurants, concerts, going out for a drink and travelling. She was very protective of her younger sister and had a good sense of humour. She thought her sister was absolutely hilarious and used to get her to do impressions and would be in stitches at them.  She loved her home comforts too – having a meal with us and getting into her pyjamas and watching a film.

Losing Jessica devastated our world

We are now back at work full time but losing Jess has devastated our world and we are still trying to adjust. We will never come to terms with it. We have all had counselling which is ongoing.

In August we climbed up Mount Snowdon in Jessica’s memory and her work friends met us there. They had organised it and invited me and my wife along. We all raised quite a bit of money for the British Liver Trust and it just shows you how people feel about Jessica and the impact she had on other people’s lives.

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