Raising Awareness of Liver Disease - British Liver Trust

British Liver Trust

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Raising Awareness of Liver Disease

Richard-Allen profile image
Richard-Allen

The raising of awareness of liver disease over the years has taken me down many different roads. People in high places need to be informed of what is going on as well as the general public. I have, it seems used every opportunity to try and spread the word, and have been a thorn in the side of many MP’s and politicians over the years (who for the best part seem blinkered).

My latest venture has taken a rather unexpected twist. My next-door neighbour is a lovely young lady, who is presently studying to become a nurse at the local Keele University, and at our local University Hospital. She is writing her dissertation based on me and of my experiences with mental health and liver disease, and especially that of post-transplant survivors guilt.

I have written a four-page article about my experiences to my neighbour’s senior lecture of nursing, Dr John Gigan. I am expecting to be invited to give a presentation of my experiences. The general consensus at the moment is that many people don’t realise the traumatic mental effects a liver journey can have on someone especially post-transplant with PTSD.

The only way of getting local healthcare and the CCG’s to take notice is to raise awareness.

The fight goes on. Bring it on 2021.

9 Replies

I have never smoked and never been what I would call a heavy drinker. I am 71 I. My early 50’s I would have a couple of glasses of wine most nights I packed that up in my late 50’s and only a social drinker into my 60’s mostly because it’s expected. So never thought I would ever have a liver problem. I am thinking it is the paracetamol I took during a painful time with nasal Polyp facial pain. So anyone can get Liver disease. I am in early stages of finding out what is wrong and having a scan Monday. This should be highlighted more that we should look after our livers I agree.

Hi, I've only ever posted once but read posts from this site every day. I am currently going through tests myself, waiting - waiting- waiting it drives you absolutely insane do yes the mental health effects are huge! I can't imagine what you must have been through. I really do get a lot of comfort through reading yours and many others posts, who have such valuable advice. Thank you xx

Like so many others my husband found out far too late.He also was a social drinker but I certainly would not say he was a heavy drinker nor did he have a problem with alcohol.

Prior to his death, he had stopped drinking anything at all for over a year.

However alcohol is the first thing people associate with liver disease and sadly there are many other reasons.

My husband had vitiligo which is an autoimmune disease and many doctors, consultants mentioned this every time they saw him and I do wonder if this contributed in any way but I suppose I will never know.

His journey was such a difficult one and we met hurdle after hurdle. He was very ill and spent much of the 4 months since we knew about it in hospital.

The jubilation we felt on being listed for transplant and getting the call 2 weeks later was immense. Our prayers had been answered.

So very sadly and tragically he passed away during the transplant. They said every think went as planned until the end when the let the blood flow through to the new organ and he hsd a catastrophic bleed. The surgeon said he had never seen anything like it. He was 57!!

A wonderful father and husband who did everything for his family.

If only we had understood more and the warning signs had been noticed by the medical people.

Hernia, high blood pressure and pre diabetes. All things he had ever had.

So much I could say about this but the important thing is that liver disease needs to be more in the forefront and early diagnosis is so important and post transplant care.

Sorry for the long story🤗

Laura009 profile image
Laura009 in reply to Witcat

Hi Witcat.Please, no need to apologise for a long post. It's so important for us to share our tragic stories to help others understand that poor diet, alcohol, over use of drugs or sometimes even nothing at all can damage the liver, create the most awful symptoms and cause premature deaths. So tragic your husband came so far to have lost his life during an operation which could and should have saved him.

I am so very sorry for your loss.💔

With love

Laura xx

Trust5 profile image
Trust5Administrator in reply to Witcat

Hello,

I am so very sorry to hear that your husband passed away during transplant. Please accept The Trusts most sincere condolences.

You are absolutely right in saying how important it is to raise awareness of liver disease. Thank you for your post.

Witcat, what a sad and tragic story. Thank you for sharing this with us. You are right to point out that it's not just alcohol which causes liver damage.

While it's just as well that the liver doesn't have any pain receptors, this can also hide other problems that may be going on and unbeknown to the person. A person can have a liver disease for many years and not know it.

Take for example the Alpha One condition. Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition that is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. If a person grows up not knowing they have this condition and was to go out partying and having fun at weekends. This could become a double assault upon their liver. There are also several different conditions like autoimmune hepatitis that can go undiagnosed.

Sadly no two liver transplants are the same, and things can and do go awry. The surgical team will normally fully discuss the procedure beforehand and try to eliminate any potential problems. I was aged 64 -years old when I had my transplant. My donor was just 48 when he sadly died. The upshot in this age difference was that my veins were a lot thinner than that of my donor, so connecting all the plumbing bit was a lot harder and became a challenge.

This is such a sad story, and my heart goes out to you and your children. You’ve all been on a hard and long journey together. There must be so many mixed emotions at this hard and difficult time.

Please don’t become a stranger on here. Once the dust has settled and you are feeling better. You could become another Laura and try and reach out and help others. Share your experiences with others.

It’s just a thought.

Bless you all

Richard. xx

I have Alpha deficiency as well as Nash liver disease have never drunk alcohol I am 75 years old -didnt find out about either disease until 3 years ago --- My hepatologist thinks Nash wasnt affected by the Alpha but lifestyle ----all the more reason its important to have awareness --- I thought liver disease only came from Alcohol

Thank you Richard, I read many of the posts but feel I don't want to frighten anyone who is going for their transplant or waiting on one.Although they explain there are risks,you never expect things to go wrong. In fact the surgeon said when he was going down,don't worry this isn't 50/50.

There was a leak in a vein behind the liver and them they put their hands in to move it out of the way the veins they had seen together ripped and the surgeon said it was catestrophic and he had lost so much blood.

It was not what we expected but given the situation with Covid that we all find ourselves in, I just wonder how he would have coped. I spent 10/12 hours a day with him while in hospital and I became his nurse. The nurses only had to administer the drugs or take blood. I did everything else and he hated when I had to go home, so being on his own would have been so distressing for him.

I also found this site much to late and we absolutely didn't understand anything about this disease. Not only do I wish that we knew what was going on internally re the liver, I wish I had found this site so much earlier. I just happened upon it.

It is so supportive and informative.

Thank you to everyone for that. 🤗🤗

I love your post ---a lot of people do not realise that the mental affect of liver disease is almost as bad as the disease it self . I could have been given information years ago and even when i was diagnosed at the hospital i was left for 2 years without an appointment and then had a biopsy which said i was stage 2 Nash from only having fatty liver --- it needs to be stressed hoe serious even fatty liver is ---I was not seen for two years because someone forgot to put me on the clinic list . I was so angry --- now i question everything and now have a label of anxiety --- true I have a state of anxiety as i am scared of a disease that is a silent killer --- I have taken back control and if i get on peoples nerves by asking questions then so be it

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