learning

[mac43]

I,ve got to say i,ve only been in this community for 2 days and after reading other peoples stories i have learnt more about my illness than the doctors have told me in 2 years. So a big thank you to you all.

[Footygirl]

Hi mac, welcome! Yes you will find so much more compassion, ideas and help on here.

Never feel alone with your condition, we all know about the cost of symptoms and having to repeat ourselves to doctors.

Glad to have you here. Enjoy your stay!

Regards

⚽️

[RodeoJoe]

If you don't mind me asking, what's your illness?

My personal experience of cirrhosis was that after the initial shock of diagnosis, for almost 15 years I went to the consultant every 6 months for a bloods and an ultrasound. I knew almost nothing about the illness until I got really ill, and needed a transplant.

(I do take responsibility for my own ignorance because I was definitely in denial)

[Footygirl in reply to RodeoJoe]

Hi Mac

I have Autoimmune Hepatitis, which I can claim no responsibility for. Just sapped me 14 yrs ago and lead to diagnosis of Lupus. Now that is a whole different can of worms.

I tune in to any site which deals with any of my various conditions. I will learn anywhere and I do too. Much more support on these sites in my opinion and we all do need it from time to time.

Unfortunately, most of us find self education is the way to go. You can research diets, which may help,and all sorts of ideas which are never, in my opinion,offered when you attend the sausage making conveyer called the NHS.

So ask away, you may have helped a few others who had a question.

Take care

Regards

⚽️

[RodeoJoe in reply to Footygirl]

I had some kind of suspected genetic problem that they couldn't diagnose. I suppose they find new diseases all the time, so one day I might get a diagnosis. But as far as I can tell it doesn't make a big difference to treatment to the cirrhosis. It may also have been auto-immune as I also suffer from coeliac disease.

Before liver failure then it's important to keep an eye on varicose veins in the oesophagus, and you may need to take blood pressure tablets to ease the portal vein hyper-tension. Low salt, and no alcohol is the way to go when you have cirrhosis.

When you start getting liver failure then almost no salt and watch your liquid intake.

That's what I learnt.

It's really worrying I know! Any questions just fire away. This is great site to vent your worries and ask questions.

[mac43 in reply to RodeoJoe]

Thanks

[mac43 in reply to RodeoJoe]

cirrhosis of the liver , liver scarring and severe osteoporosis.

[mac43 in reply to RodeoJoe]

cirrhosis of the liver, scarring on my liver and severe osteoporosis.

[H1ghtower]

I'd like to second that last comment. Has anyone got an uptodate site with a list of drugs and drug interactions that need to be avoided please? I dont think caffeine is mentioned but the gastro dept at the lgi said it was crucial to recovery which i,m sure was exaggerated but wouldnt mind checking it out for myself. I,m having to keep explaining to my family re my isolation and my lack of faith in the system so i wouldnt mind backing it up with facts that are explained in laymens terms if a site like that exists, lol.

[RodeoJoe in reply to H1ghtower]

Hi H1ghtower,

I can sympathise with your comment about isolation. I don't know whether it was the stress, the toxins in the blood but I became more of a recluse as the disease progressed. I think it really takes it out of you mentally.

In fact when the jaundice started, that was it. I didn't see my family for months, always made excuses about meeting with people etc...

It took some time for me to pluck up the courage to get help.

[H1ghtower in reply to RodeoJoe]

I bet it would be different if the middle class where getting it in any way. Its a shame Russell Brand isn,t a sufferer, lol. I reckon if i was famous and noone knew i was an alcoholic i wouldnt feel the need to let the public know i had an alcoholics disease either so its understandable i suppose and highlights the need for lack of stigma and public acceptability in my opinion.

[Footygirl]

Ooops

Sorry, Rodeojoe Were you asking Mac?

Red face

⚽️

[RodeoJoe in reply to Footygirl]

I just replied to you Footygirl. No prob's. Both of you really!!!

Hope my answers help you both

[Footygirl]

Indeed. Thanks

[H1ghtower]

Its life threatanaing when institutions are expected to provide care to terminal patients without any official protocols to cover medications not being given. I was sectioned for the first time 3 years ago and i was gonna be tranquilised like everyone else if i hadnt been sane enough to spend all day ramming it home i was a cirrhosis sufferer and it could be he symptoms but i did the same when the two psychiatists where in my home authorising my mental hospital visit without it being checked before i was whisked away. They could of proved me wrong at least if they thought there where consequences. I had to really work on staff at the nuthouse to get there attention enough to check what i was claiming though and they didnt give me anything thankfully just to be on the safe side.

I think theyve spent enough time on flaming depression and whether drug use should be treated as a disease rather than a lifestyle choice by now though. They should try something else now like a strong deterrent to alcohol as a reason to not drink excessively. I dont think theres many people who know its alcohol not social drugs that is by far the most contributor of deaths by liver cirrhosis. Caffeine, ibruprofen and paracetamol are more damaging to liver than cannabis and amphetamines put together ive recently read but you cant expect the public to know this without someone official or medical informing them as much.

[RodeoJoe in reply to H1ghtower]

Yes, I agree with you. Alcohol destroys lives, family's, and society.

Just take a look around your local city centre at 2-3am on a Saturday night (specially after payday) . A drug so addictive would never be legalised if it was invented today.

The reason it is legal is the billions pounds of taxes it brings in every year. Unfortunately until the damage it causes costs more than the taxes it'll be easy as it is to get hold of today.

[angse]

Hi mac43 yes same here I have learned so much on this site, and everyone so caring keep well Annette

[mac43 in reply to angse]

Thanks annette

[findasolution]

To me some of the above comments are a bit depressing and to the extent they leave me wondering why some people perceive there is no or little help from the NHS the GP's or other sources at all.?

Perhaps I have been very lucky and I certainly have no idea what those who are or were alcoholics go through because I have never consumed alcohol in my entire long life time, but I do know that from the moment I was first diagnosed with Chronic AIH with advanced fibrosis just over 5 years ago and the subsequent advancement of that to Cirrhosis which has become de-compensated by ascites and varices the treatment and attention I have received from my local NHS hospital, my consultant and my own GP have been excellent. Whenever I have had need and fortunately not very often to visit A & E or my GP for other ailments /illnesses they have usually gone out of their way to ensure that any medication and in particular antibiotics are not hepoatoxic before prescribing them for me. At no stage have I ever felt stigmatised by clinicians and or other professionals and it is only some uninformed members of the general public who when you mention the word cirrhosis usually come up with some quip like 'how much whiskey have you been drinking to bring that on'. Anyhow that doesn't bother me because I know and understand the causal reasons for my cirrhosis and have discussed most aspects of it many times with my consultant so thats really all that matters.

As to what drugs /medicines/herbs etc should be avoided there are plenty of reliable web sites that list those and of course one only has to go the The British Liver Trust web site and peruse its many publications to find out most things one needs to know about liver disease, treatments,tests diets etc. The information is there if you need it but it will not come to you so you have to be pro active look it up and research it and learn.

However as I said above, perhaps i have just been lucky in my own experiences.

Not forgetting this forum is also a huge source of extremely good information on liver disease and treatments etc based on the personal experiences of liver disease sufferers from initial diagnosis through to post transplant etc. Its unfortunate, at least in my own view, that this particular thread started initially by Mac43 has brought out some responses that come across as a little negative.

Regards

[Bolly in reply to findasolution]

I'm the same as you findasolution. I cant fault the treatment and attention I have received from all my medical team, be it the liver cancer surgeon at a regional hospital, my local NHS hospital who do my blood, my consultant at a specialist city hospital clinic and my own GP. Perhaps like youI have 'just been lucky', but I've never had one negative or sarcastic comment from any medical professional and nor have I had any negative reaction from my work colleagues or my friends and family. They know my cirrhosis and liver cancer was not caused by alcohol as I dont drink, they dont fully understand what caused it, but they always take time out to find out how I am doing.

[mac43]

If your refering to the post i put up about reading peoples stories. I have learnt alot here because i have never spoken to anybody that has the same problems as myself. And what the doctors and specialist have told me, some of it does,nt register because my memory,since i came out of my coma has been awful. So with me being on here i can read posts over again, so if you think i,m slagging off the doctors etc, i,m not and if i,ve upset you in anyway that was,nt my intention ok.