I’ve always suffered with my health, but I’ve masked it and just got on with it because I don’t know anything else.

I have polycystic ovary syndrome and am insulin resistant so I struggled for years to get pregnant – I had years of fertility treatment and ovarian stimulation, but suffered eight miscarriages. My daughter was conceived naturally and unexpectedly a few years later in 2012 after I stopped all the treatments due to the effect on my mental health. Looking back, I really don’t know how I got through it all. It certainly triggered comfort binge eating which led to an unhealthy weight gain and lifestyle.

I then suffered with gestational diabetes when I was pregnant – it was quite aggressive and hard to keep under control. I also had something called polyhydramnios (where there is too much amniotic fluid around the baby during pregnancy) which can affect the organs, including the liver and the baby. This is a complication of diabetes in pregnancy, but only one per cent have this condition and I would be that one per cent! My daughter was born a healthy 7lbs 5oz at eight months through an emergency caesarean because I had diabetic ketoacidosis (when the body starts to run out of insulin) and preeclampsia. Blood tests showed my liver function was suffering too. I was told that was probably the result of the caesarean, preeclampsia, the diabetes and all the medication I was taking.

It took six months to heal my liver and get rid of the diabetes after stopping medications and the after-effects of pregnancy, but I was warned that I would always need to keep an eye on it. I continued to feel quite poorly, was disabled by fatigue and couldn’t function properly.  The doctor picked up on my B12 levels, but I didn’t really get any tests done. It was only when a new nurse took over at my GP surgery in 2020 that I was called in. She wanted to check my liver function and do a diabetes check.

I didn’t know anything about NAFLD and wasn’t even given a leaflet.

The diabetes had come back with a vengeance. My liver function was suffering too and causing a stabbing pain. I also had something called albuminuria – a sign of kidney disease. I was 36 then and felt far too young to be having all of these conditions. I freaked out when I was told I would be tested for hepatitis – it’s a scary word that you associate that with drug users or promiscuous sexual activities.

I was also referred to a gastroenterologist who asked for a liver scan and it showed it was enlarged and fatty. I received my NAFLD diagnosis in the form of a letter and was left to my own devices. I didn’t know anything about it and wasn’t even given a leaflet. I panicked and was anxious that I might die. I kept thinking I’ve got a little girl to look after. I’ve never drunk alcohol, smoked or done any illegal drugs, so I was very confused and thought why is this happening to me?

I felt embarrassed about the diagnosis too because of the stigma attached to it. People don’t understand liver disease and think it’s associated with abusing your body. I didn’t want to tell people because it would sound like I was a hypochondriac or making up stories saying I was ill with this, ill with that… because in a way it’s unbelievable how much someone can be ill.

When I did confide in a couple of people they said: ‘Is that why you don’t drink then?’ Or ‘You’re much too young to have that. You must have hammered the alcohol’. I’ve never done that.

Most people don’t educate themselves about liver disease until they or someone they know has it. They shouldn’t be so quick to judge. There’s a whole host of reasons why somebody’s organs might fail them or don’t work properly.

Every time I spoke to the surgery nurse I kept saying I need to be here for my daughter – I cannot be like this. My GP told me to lose a bit of weight and concentrate on lifestyle changes and I started doing my own research about how to look after your liver.  I then understood why I had been so chronically fatigued. I’d been completely exhausted 24/7 and could sleep 16 hours a day. My friends would ask me if I was coming out, but I was too ashamed to say why I wouldn’t. With my low energy I’d make it through to the end of the day but then wanted to stay at home in my pyjamas. And because I was so tired I wasn’t taking great care of myself so I’d got stuck in this vicious cycle.

A painful side effect to my liver disease was biliary colic and gallbladder problems

A painful side effect from my liver disease was something called biliary colic and gallbladder problems which meant I was hospitalised during flare-ups. These flare-ups would happen if I ate heavy meals such as pasta or bread. They are seriously crippling and painful.

So I stopped eating takeaways. I read that you should follow more of Mediterranean diet and prepare fresh vegetables. I also limited carbohydrates to limit the diabetes. Things weren’t improving though and I couldn’t work out what was going on. So I was sent back to the gastroenterologist and he said it was linked to the diabetes.

I was diagnosed with depression and anxiety disorder.

Sometimes I felt like giving up but this nurse kept on top of me. She said ‘clearly your diabetes medicine isn’t working’ and changed all my medication. She rang me every two weeks and changed my medication four or five times until it was right. Now my diabetes and liver results are in the normal ranges and she’s very proud of me. I have the best nurse.

I still have other autoimmune medical conditions including fibromyalgia. They affect me daily in a similar way to liver disease, but I just get on with it. Thankfully since my liver has improved my other conditions have become easier to manage. I’m doing the best I can and have the confidence now to go off and educate myself on what I need to do to fix it.

The gastroenterologist told me to follow either a Mediterranean or vegan diet and I now cook everything from fresh.

Every doctor should have information booklets or links to support groups because you’ll find conflicting advice on the internet. That’s how I found the British Liver Trust and its genuine, trustworthy information. I always look for legitimate sources not just people telling you “someone’s mum said…” or others suggesting what to do when they may not necessarily know.

Although I am improving, I still struggle every day but am learning to manage and be kinder to myself.  Every day is a new start and I am mindful about the effects of what I consume will have on my body, my multiple comorbidities and how to lessen their side-effects and symptoms. My liver will always be my best friend as I now know just how important it is for your body’s processing to get you through life. Fortunately our liver is the only organ that can regenerate parts of its tissues. 

What’s key is to have three meals a day, but not if it’s packaged and got a label on it – to me that’s not real food. In the past I would go to McDonalds, then get awful stomach cramps and diarrhoea and wonder why. I’m not even attracted to the taste of that now. I couldn’t think of anything worse. I now cook everything from fresh.

If anyone who is suffering similar to myself asked me for advice, I would say be kind and patient with yourself, life is not a rush. It’s taken me two-and-a-half years to get my liver healthy. Look at the whole picture and break your journey down into small steps. The first step is accepting then recognising, the second is having a plan. I now plan all my meals for the week to keep me focused and reward myself with a spa day – something healthy for the body instead of chocolate bars and sweets! I have goals.

You can have as many steps as you need but sometimes life will throw you off a few steps here and there, but there’s always a step leading you back.

The post Cheryl’s story “I received my NAFLD diagnosis in a letter and was left to my own devices. I was anxious that I might die and kept thinking I’ve got a little girl to look after” appeared first on British Liver Trust.

Chris: I’ve had psoriasis since I was a baby, my grandfather suffered with it too. I’ve had all sorts of treatments for it – infusions, tablets, UV treatments and biologics, and that’s what’s messed my liver up.

I’ve been working as a farrier since I left college, but a couple of years ago I started feeling ill – I was bloated and sleeping a lot. On 8^th December 2020 I was referred to hospital because I was getting worse. My belly was distending and when I went for an endoscopy I started vomiting blood everywhere. They had to cauterize my gullet, but I’ve since had stomach ulcers so had to go in again and again – I had eight endoscopies over 12 months. I also went for CT scans, ultrasounds – every scan known to man – and was told I had non alcohol cirrhosis of the liver and might need a transplant.

It was a bit of a gobsmacker – I was 45, working, providing for my family and in the prime of my life and then all of a sudden I had this to deal with.

I was put on some heavy-duty pain killers like Oramorph, Tramadol and Diazepam and given diuretics to move the fluid. I’ve always eaten healthily, but they really knocked my appetite. If a meal was put in front of me I would just push it away, if I tried to eat it I would just start vomiting – I could only have soups and jellies.

The A&E consultant said that Chris had been slipping in and out of a coma

Sam: About four months later we’d gone to bed as usual and Chris was very quiet and absolutely still. I was talking to him and stroking his head but he wasn’t responding. I thought it was because he wasn’t well and exhausted through lack of sleep. We were told later by the A&E consultant that he had been slipping in and out of a coma due to the build-up of ammonia in his brain.

At 5am Chris got out of bed and tried to go to toilet against the bedroom wall. He was very disorientated, unsteady on his feet and agitated. I asked him what he was doing and he replied: “Aren’t I in the bathroom?” Then he turned and went into my youngest daughter’s room.

He was adamant it was the toilet and started getting verbally and physically abusive and that’s not Chris at all. He’s a big lad, but he’s a gentle giant. I got him out of there and stood by the door thinking he would try to push me out of the way because in his mind I was stopping him from using the loo. He’d obviously woken both our daughters up with his raging.

I was scared because I just didn’t recognize him, he was totally in his own zone.

Chris: Sam thought I had overdosed on Oramorph. I went into a temper and was raging for two and a half hours, telling Sam to ‘**** off and leave me alone’. I didn’t know who I was, where I was or what I was doing and didn’t recognize Sam. My elder daughter came out of her bedroom and Sam told her to call the police.

Sam: Chris never has and never will lay a finger on me, but that night he tried to punch me. I ducked and covered my face. He was switching in and out of this weird behaviour and eventually ended up in the toilet where he soiled the bath. There was no point in telling him me was in the bath, it had taken him ages to step in there, so I treated him like someone with dementia and just went with it.

I was absolutely exhausted, mentally and physically, and so scared. I called his mum, but couldn’t speak. I was just crying.

I remember nothing until I woke up ten hours later in A&E, wired up and having blood tests

Chris: Four police officers turned up to get me out of the house. The sergeant came upstairs and I was still raging. He kept saying: “Come on, mate, we need to get you into hospital” but the more he called me mate, the more he wound me up.

Sam was worried that I was going to flip and clock him because I didn’t know what I was doing. Two other policemen came up and stood in the doorway. One was an old friend from school and he said: “Come on Chris, let’s put your shoes on and we’ll go for a run in the car.” I went down the stairs with him and he put me in the back of the car, like a little kid. I remember this but nothing else till I woke up ten hours later in A&E, wired up and having blood tests and all sorts.

Sam: His mind was racing by then, thinking I would want him out of my life and not understanding what was happening. The A&E consultant didn’t really explain anything or tell him he could ring me. They rang me to say I could come and see him, but nothing about how he was. It was only when I got there that I was told Chris has suffered a bout of encephalopathy. If we had been told about it before I would have known the symptoms and how to avoid it or stop it going any further.

I’ll never forget that night. The police asked me if I wanted to press charges. I didn’t. Of course not.

Chris: It was a learning curve for us and when I got home four days later I got another bout. I was getting agitated because I didn’t want to go to hospital.  An out-of-hours GP came and went, then an ambulance crew turned up who managed to persuade me to go in. They asked me my date of birth, but I couldn’t remember or again who I was or where I was. I also couldn’t tell then what 100 minus 2 was either. It’s a very, very scary situation to be in – for the partner too.

Sam: This second bout wasn’t as extreme, but he was trying to urinate against the wall again. I called the doctors straight away. All in all he’s had about seven episodes and each time he’s delirious and disorientated.

Chris: I was referred to Queen Elizabeth Hospital in Birmingham where one of the surgeons told me to stop taking Omeprazole tablets because a new study says it can contribute to encephalopathy.

Sam: I’ve been walking on eggshells every day, but less so since he came off the Omeprazole. There have been no weird signs since.

It’s taken me two years to be fit enough to get on the liver transplant list

Chris: They did loads of tests in Birmingham and said I needed a new liver. I’d been in and out of hospital for 12 months so my fitness totally went and I’d lost a lot of weight. The dietician said my body was eating itself so she gave me high protein shakes and tablets. They’ve really helped me build myself back up. My appetite is still up and down now, but I do try to eat because I don’t want to lose muscle mass. It’s taken me two years to be fit enough to get on the transplant list. I’ve been on an exercise programme under a personal trainer to lose more weight and build up muscle.

Sam: We faced one obstacle after another to get Chris on the transplant list. We were told if he couldn’t reach the level of fitness needed it would be palliative care. We’ve only been together 13 years and created a family. I will nurse him until his last day on earth, but I’m not ready for that. It’s not fair.

He was put on the list on 8^th December, which is very ironic, because 8^th December two years ago is when he first went to hospital. It’s been a very long and stressful journey.

Chris: I felt there was now light at the end of the tunnel, but after I was put on the list everything was gradually getting worse. I was getting the shakes and would vomit slightly whenever I tried to eat.

I’d been feeling rough for a couple of days and was as yellow as a minion when I had an appointment with my physio. I was immediately given a blood test and told not to leave until my consultant had been informed. He admitted me to the ward and told me both my liver and kidneys were playing up. I’d put on nine kilos of fluid in less than a week and also had an infection.

I was due to be discharged after a week, but still wasn’t feeling right so was kept in for longer. Then on the evening of March 25^th at 5.30pm a nurse told me I needed a chest Xray because I was going to be transplanted that night! I tried to ring Sam, but she was on the beach walking the dogs. Then I rang my mum but she was out, so I sent them both texts. It was a bit of a whirlwind but it was the best way as I didn’t have any time to mull over it.

They put a mask on my face in theatre and told me to breathe in and out and the next thing I knew I was coming round in ICU.

The operation took nine hours, including three to remove my old liver, I had two hours of dialysis halfway through and then they took my gallbladder out. When they fitted the liver and the blood started flowing, it was like it and my body were old friends and I’ve not had any trouble with it since.

The first thing I noticed after Chris’s liver transplant was that his psoriasis had gone and it hasn’t come back since

Sam: The liver coordinator phoned me at midnight to say Chris’ liver was out and she phoned me again at 3am to say he was out of theatre and would be moved to ICU at 4am. I was able to see him at 11am and the first thing I noticed was that his psoriasis had completely gone and it hasn’t come back since – he’s got skin like a little baby now.

I spent every single day sitting next to him and talking to him. The way it happened was just so surreal and I’m so glad it’s over.

Chris: After the transplant I was in intensive care for five days and then moved to the ward. On the first day there I walked six steps forward and six steps back with the physiotherapist’s help. The day after they took all the catheters and the drain in my abdomen out and I walked to the toilet and back, then out of the ward and up to the first nurses’ station and back to my bed. Then I did a whole lap of the ward and haven’t stopped since.

I went home ten days after the transplant and the care you get afterwards is second to none, if you have a problem you can ring them any time, night or day. Nothing is too much of a problem.

When I came out of theatre my bilirubin was 187 and it’s now down to 24 so my new liver has been clearing the old mess up. I’m getting used to the anti-rejection meds now, but I’m feeling a lot healthier already and my life is starting to come back together.  My appetite is still a bit finicky – food is either salty or too sweet, but that’s my taste buds trying to adjust, otherwise I can keep food down and am eating as healthily as I can. I’m on a high protein, low calorie diet and sticking to what the dietician at the hospital has said.

Everything is starting to get better – it’s all baby steps at the moment – but I’ve been given the gift of life again and will see my daughters grow up and get into their chosen careers. My youngest is eight and says she wants to be a nurse. She watches Sam do my tablets then checks the dosage herself and says: “You can take them now”.

I missed a lot of time with her through not being well but hopefully things will settle down now and we can get back to normal family life. I’m looking forward to going to the beach with the dogs and going camping – all the things I missed out on over the last three-and-a-half years. I had to surrender my driving license before due to the encephalopathy and I’m looking forward to getting it back.

I would say to anyone in the same position, think of something that will motivate you – your kids, your wife, yourself, and keep your head down and push yourself as hard as you can. Stay positive, never give up. You will get low days but you’ve got to keep fighting. Life’s too short and too precious.

I’m so grateful to the donor and their family – they’ve given me the gift of life.

The post Chris and Sam’s story: “We weren’t told about encephalopathy at all” appeared first on British Liver Trust.

Speaking to the British Liver Trust nurse was like getting the biggest hug from my mum!

It all started with an insect bite which had got infected, resulting in my GP prescribing me Flucloxacillin for seven days. Around ten days after I took my last dose, I got a very bad headache, felt extremely tired and nauseous, and completely went off my food.

A few days later, it felt very tender under my ribs, with a pain which radiated towards my back. My urine was much darker than usual, my skin had become very itchy, and the whites of my eyes had a yellow tinge. I called 111 and was told to see an out of hours doctor. She confirmed I had mild jaundice and mentioned that there had been reports of people having liver issues due to this antibiotic – but stressed how rare it was. She advised me to go straight to A&E and have my bloods checked, which confirmed abnormal liver function test (LFT) results.

Diagnosis

A few days later I went back to have an ultrasound, which revealed gallstones, and further blood tests, with LFTs which were continuing to rise. They suggested there could be a stone blocking my bile duct, which can cause jaundice. The pain under my ribs had started to ease, but the itching, loss of appetite, nausea and jaundice continued to worsen. The itching was the worst symptom, and it was incredibly hard to sleep – my skin felt like it was burning with lots of ants crawling around underneath. I tried ice packs, foot baths and lots of moisturiser, but they were all short-lived and it felt torturous at times.

After a week of going back and forwards to the hospital, they decided to admit me to hospital for further tests – especially because there was an added concern of Wilson’s Disease, which my father passed away from (sadly, during a liver transplant). An MRCP scan confirmed that this wasn’t down to my gallbladder or bile ducts, there were no signs of cancer, but that my liver was inflamed. Again, I mentioned the possibility of a drug-induced liver injury to the medics, and they agreed this was probably the most likely cause. The only treatment they offered me were antihistamines, which I decided not to take due to my nausea, and Colestyramine.

Ten days later they discharged me, with my bilirubin levels decreasing slightly, yet my alanine aminotranferase enzyme (ALT) levels were still increasing. Three days after leaving, my blood results revealed my bilirubin level was rising again, along with my ALT. By this point I had lost 12 pounds, my arms and legs were covered in deep scratches, sores, and bruises, and my skin was now yellow all over. Two weeks later, my ALT level had risen to three times the amount it was when I left hospital. There was talk of having a liver biopsy if things didn’t improve over the coming weeks. The test results for Wilson’s Disease all came back normal, bar one, which was slightly raised, but they didn’t seem overly concerned about it.

Helpline

By this point my mental health was really suffering – I was crying daily, mostly due to the symptoms, but also from a fear of the unknown. At this point, it had been six weeks since I first became ill and I felt no better. I did some research and came across the British Liver Trust, which I discovered had a helpline. I spoke to a nurse who answered all of my questions, and more. It was like getting the biggest hug from my mum! She told me that “treatment was time” and that if I overdid things, I could expect to feel it the next day, and she was right. Over the following weeks I finally began to improve and by week seven or eight my liver function tests were also reflecting this.

Three months after I first got ill, my levels were back to normal, my skin and eyes had returned to their usual colour, and I was no longer itching. I was told it could take anything from two to six months to feel completely back to my usual self, and in my case, it was around six months. I was so relieved to have turned the corner and pray it doesn’t happen again. Unfortunately there doesn’t appear to be any tests I can have to ensure I don’t have the same response to an antibiotic again; however, they have reassured me that this is very unlikely. In the meantime, I will continue to do some research in the hope that this test may one day become available.

The post Julia’s story: “My skin felt like there were ants crawling around underneath.” appeared first on British Liver Trust.

I wasn’t aware that I had overdosed until I went to the RVI and needed to stay overnight to have tests done.

“I had my liver transplant in February 2020. Up until then I’d always been very healthy so this was never expected for me.

“I quickly became very ill after suffering from horrendous mouth ulcers and after a week ended up with paracetamol poisoning and therefore started overdosing. I was in my final year of uni at the time so I was at Newcastle, rather than at home.

“I wasn’t aware that I had overdosed until I went to the Royal Victoria Infirmary and needed to stay overnight to have tests done. The next morning I was put into an induced coma whilst they tried to find me a super urgent transplant.

“Before the transplant, I suffered from a cardiac arrest in the coma and afterwards I suffered from a brain haemorrhage on the right side, causing me to lose all feeling in the left side of my body. I woke up from the coma around 11 days later, unaware of what had happened after having some very vivid dreams, one being that I had given birth!

“At this point I was hooked onto tons of machines, I had a tracheostomy in my throat giving me oxygen as I couldn’t breathe on my own, I had a feeding tube and was using a catheter. I was in intensive care at Freeman Hospital for around six weeks, not being able to talk or eat but had my mum and friends with me constantly. This was up until the UK went into lockdown and visitors were no longer permitted. My mum had to go back to Jersey and I couldn’t see my friends anymore.

Recovery during lockdown

“At the end of March, I had the tracheostomy removed and was moved onto a transplant ward. I was then allowed to start eating again, however the feeding tube caused many difficulties and there wasn’t a time I had it in that I wasn’t sick after eating or taking my tablets orally.

“On the ward I began physiotherapy to start walking again which I found extremely challenging at first and didn’t believe I’d ever be able to walk again, but to my surprise I was able to after a few weeks which was a shock to me! Around this time my catheter was also removed. I had to have a stent put in to connect my bile duct and liver as there was a narrowing which was done with an ERCP, meaning I needed to get the feeding tube out for it to be performed.

“Once this was done, I was able to eat again without having any issues which was a huge relief as I was starting to get anxiety whenever I was brought in meals. From these improvements, they started looking at getting me home (with a medical airplane due to airports being closed) and I finally went home on the 22^nd April 2020.

“It was such a relief to be back with my family and my dog who I’d missed so much. I still wasn’t able to see anyone else at this point due to being high risk, then once lockdown had become less restricted, I had to go back to Newcastle due to contracting the CMV virus! I was back there for around two weeks to be treated, had my stent changed and then came back on the medical plane again. I then was able to see my friends again and gain as much normality as I could in these times.

“At the beginning of August, I had to go back to Newcastle again due to my stent becoming blocked. I was meant to come home after five days but my bloods weren’t improving but was allowed back home after a week due to there being no huge risk.

“Now I’m home and my bloods are being monitored, I seem to have contracted the CMV virus again but at a much lower form, so am currently in hospital in Jersey to keep me isolated and safe until there is an idea on how to treat it.

“In terms of support, I have been in contact with some psychological and neurological staff members in Newcastle but there hasn’t been huge concern on my emotional wellbeing as I’ve had lots of support from my friends and family as well.

“I will be forever grateful for my donor and their family”

“In my opinion I feel like they went through the motions more emotionally than I did as I wasn’t awake for most of the bad stuff! I’m in contact with a girl my age who has also had a transplant who my liver consultant introduced me to and it’s comforting to know someone in the same position.

“Myself, my mum and my dad have written letters to the donor’s family in July but are yet to hear back but I understand it can be difficult for them. I think organ donation is so important and I’m so glad there’s now an opt-out system, even though I was already registered, as I wouldn’t be here without the organ donation system. I will be forever grateful for my donor and their family to have put themselves on the list.”

The post Caera’s story: “I accidentally overdosed on Paracetamol and had a liver transplant” appeared first on British Liver Trust.

If you’re on long term medication, don’t settle for blood results, insist on an ultrasound scan, just as a precaution, but it might just save your life or at least give you a better chance of stopping further damage; They don’t call it a silent killer for nothing!

It’s important for people to know how serious this disease is. I have fibromyalgia and a crushed spine causing severe neuropathy and have been in massive pain for 8 years and on very strong pain relief. For a few years I had been complaining to the doctor about sweating so badly I would be drenched in seconds, but each time I was brushed off with excuses like it’s your diabetes, the drugs you’re taking etc.

Eventually in April last year, I became very sick, the only symptom being the sweating and generally feeling ill. After refusing to go in to hospital, they did blood tests every other day and for a week, my liver enzymes came back at 186 rather than the normal 34. I was sent for an ultrasound, then a CT scan and when I finally got the results, the GP said I had “scarring” on my liver and it was caused by the pain relief. She said she had a couple more patients in the same position and would be remiss if she didn’t refer me to the specialist for care. It was all played down to the point where it felt like it was nothing more than a sore knee. Unknown to me, the results actually said cirrhosis!

In November, I saw the consultant who gave me a bad prognosis, telling me that there was nothing more he could do for me and I wouldn’t even be eligible for a liver transplant, I was devastated. Back at the GP’s surgery, she still maintained it was JUST scarring, it was then that I saw the word cirrhosis on the report she showed me. By now I was totally confused, hospital telling me it was the end of the line and GP saying it’s nothing serious.

 I intend to live with the disease rather than die from it!

I saw the specialist hepatology nurse on 18th January, 2 months from my diagnosis. The seriousness of the illness is now fully apparent. During the appointment, I had a fibroscan and it showed that my liver is fully cirrhotic and although my latest blood results are still too high, she said there’s no cause for alarm and my liver is still compensating! My only symptom now is being extremely bloated with trapped wind which can be quite painful but I’m dealing with that today

I have been told to change my diet to high protein, so lots of milk, cheese, eggs, chicken and fish and because my liver can no longer store its’ own energy, she advised that I eat small amounts every 2-3 hours to prevent my body from breaking down my muscle tissue for energy ( typical, having been a prolific over eater all my life, I finally managed to conquer it so I don’t eat much and now I’m told I have to eat more… Life is so unfair ). The nurse also put me on lactulose to help rid my body of toxins that my liver can’t do.

It’s less than a week since my appointment and those 2 changes have made a huge difference, my head is clearer and my memory has improved, the dreadful fatigue is easier and I feel better than I have done for months.

Since seeing the nurse, everything has been explained properly and even though the situation is more serious than I ever thought possible, I am now able to think more long term.

I guess what I’m trying to say is, firstly, if you’re on long term medication, don’t settle for blood results, insist on an ultrasound scan, just as a precaution, but it might just save your life or at least give you a better chance of stopping further damage; They don’t call it a silent killer for nothing! YOU have to be the one to care of your liver. I wish I’d known this years ago.  I intend to live with the disease rather than die from it!

Secondly, keep talking… Easy to say, hard to do but a vital part of your diagnosis. It’s scary, frustrating, frightening, you will go though every emotion possible but don’t bottle it up, it’s bad for your mental and physical health.

Lastly , there’s always hope, even when you feel lost and forlorn, somewhere there is a little bit of the silver lining to that very grey cloud.

The post Jayne’s Story appeared first on British Liver Trust.