Hi

[Petrina_gmfc]

I am new to this I just found out that I have liver problems and I don't know a lot about it .

[AyrshireK]

Hello Petrina_gmfc, welcome to our merry band. Hope you can get lots of support and helpful knowledge here.

No question is a silly one so whenever you feel ready to ask then fire away and we'll do our best.

A wee bit of background is always helpful when you ask so appropriate folks can answer and share their experiences.

Have doctors explained the stage of your liver ill health and explored the cause of it?

All the best,

Katie

[Petrina_gmfc in reply to AyrshireK]

Hi thanks I am 55 and I have two grown up sons and a partner I was told that I might need a liver transplant I was in shock when I got told it was worse that I was at the hospital as my family were working .I keep telling the doctor I don't drink when I was younger I had a couple but not now I am in a lot of pain with it and my stomach is swollen they gave me water tablets for the swollen in my ankles and stomach I am on strong pain killers for my stomach and my joints as I have arthritis and I am not on any thing for them as they took me off them .there is a history of high cholesterol in my family I am still on my Tablets for it .I am on health unlocked for my pain .

[AyrshireK in reply to Petrina_gmfc]

My hubby is also life long t-total and has a diagnosis of cirrhosis - his presented completely out of the blue with a massive variceal bleed in April 2012. He had to have a liver biopsy to establish the cause of his liver damage and in his case it turned out to be auto immune liver disease.He was assessed for transplant in 2014 but delisted 10 months later when his liver stabilized.

My advise would be to learn as much as you can about cirrhosis because it sounds like that's where you are at if you have fluid build up in your tummy (ascites) and legs (oedema). If you educate yourself you can then ask pertinent questions at your appointments and you definitely want to know the cause of your damage - some things can be treated with medicine to prevent worsening or indeed possible lifestyle changes can improve things if say the issue is due to fatty liver disease.

Prior to appointments make a list of any medications you are on and doses, any symptoms you are experiencing and all the questions you want to ask and take a pen with you to jot down answers. The more you know the better you can take control of your own illness - chasing appointments etc.

Liver transplant assessment is worth going through as you get a full body, thorough MOT and even if they don't decide to list at the end of it they will address any findings and if transplant is likely to be needed they will prepare you for it with an appropriate diet and instigate appropriate treatments.

At my hubbies transplant assessment they discovered other things on the CT scan which they dealt with by surgery the next week and also started him on further medications to deal with other cirrhosis side effects.

BLT website has information on cirrhosis at:- britishlivertrust.org.uk/in...

There is also information on there re. the patient charter highlighting information about the standard of care you should receive. britishlivertrust.org.uk/li...

The whole website is a goldmine of information. If you are also interested in learning more you could potentially do a couple of free online liver courses through Future Learn on line.

futurelearn.com/courses/liv...

futurelearn.com/courses/liv...

Best wishes, Katie

[Petrina_gmfc in reply to AyrshireK]

My doctor at the hospital said that I have that to all so I have had a biopsy and that was fine .

[Hidden]

Hi and welcome,

We hope you will find our form a supportive place to visit, you can also find lots of useful information on our website;

britishlivertrust.org.uk/

If you are in the UK, you can also call our nurse led helpline on 0800 652 7330 Mon to Fri 10am to 3pm for a supportive chat.

Best wishes.

[Petrina_gmfc in reply to Hidden]

Thanks that is very kind of you I am also on the website pain concern group to .

[hells456]

It is an awful shock when something like this comes out of the blue. I was in a similar position last year, a boring 42 year old house wife, never touched alcohol or drugs and was told I had cirrhosis. Mine is autoimmune and I didn't see it coming.

You should find information from a decent site like the British liver Trust, and listen to your doctors more than Google. You may find it helps to make a note of questions when you think of them and taking it when you see your doctor. I always take someone with me to appointments too. Don't be afraid to ask anything, or to get them to explain anything. For extra support you have us.

[Splodge60 in reply to hells456]

Nobody is allowed to take anyone with them to any appointments in this area . COVID!!!

[Petrina_gmfc in reply to Splodge60]

What area is that

[hells456 in reply to Splodge60]

I've been seen throughout covid and have always taken my partner because I have trouble remembering things. No one has said anything to us so I didn't realise I shouldn't. Oops!

[Petrina_gmfc in reply to hells456]

I would not worry about it .

[Hidden in reply to Splodge60]

Hi

At Fairfield Hospital, Greater Manchester they have just started letting us have someone with us. If someone is being cared for by their partner they've been allowed in all through the pandemic xxxx

[Petrina_gmfc in reply to Hidden]

I have had a couple of face to face. In the hospital I go to .

[Hidden in reply to Petrina_gmfc]

I should have said they pick and choose who has a f2f , my last appointment was a telephone consultation but my next one is f2f but I've had urology appointments f2f at Salford Royal this year and at Oldham last year xxxx

[Petrina_gmfc in reply to Hidden]

I have had appointment with my about my joints face to face I had another appointment with my stomach doctor and I have one coming up face to face with my bones

[Petrina_gmfc in reply to hells456]

Sorry I am just getting back to you my doctor said if I have some one with me just now I said no I am just myself .he told me to bring some one with me the next time when I go back .

[AyrshireK]

I've just come back from hospital with hubby where I was allowed to accompany him for check in, visiting and a consultation on the ward. Two pairs of ears definitely better than just you on your own.

[Petrina_gmfc in reply to AyrshireK]

I have two grown up son's one was at his so the second one was working at home and my partner was working to my friend was not happy that she could not go with me as she had work to .