Cirrhosis : Got diagnosed with cirrhosis... - British Liver Trust

British Liver Trust

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Cirrhosis

Foxdud profile image

Got diagnosed with cirrhosis five days ago due to drinking not had a drink for nearly 2 months . Was just wondering what sort of life can I expect I am working but get tired easy and my legs swell up after a day at work I’ve got a great support network although the hospital don’t seem interested or maybe I’m just paranoid .

34 Replies

That is a hard thing to say, it really depends on the severity. Have you had a scan yet? Your doctor can only tell you. I can say, a lady on here, her husbands doc has said he has cirrhosis patients on his books now and fornmany many years. It is not all doom and gloom, as I am sure that is how you are feeling right now.

Foxdud profile image
Foxdud in reply to jazzjam

Yeah a bit doom and gloom seeing doc next month thanks for your reply

Hi Foxdud, you are very early into your journey both with cirrhosis and your alcohol cessation. Staying off the booze will help your liver no end and hopefully you'll see some improvement in symptoms. The medical profession will pull out all stops to support you providing you play your part and continue to help yourself by following all medical advice and continueing your abstinence.

As regards your leg swelling, are you following a low salt diet to try and reduce fluid build up? Have you been prescribed a diuretic/water tablet to help with this.

Sometimes you find that some doctors don't volunteer much information which may feel you are being left in the dark. In order to make the most of all your meetings with them I strongly suggest you learn abit about the condition. The BLT page on cirrhosis is excellent and highlights symptoms that you should be aware of. britishlivertrust.org.uk/in...

If you learn about your condition then you can ask pertinent questions and get the information from doctors that you want. Get yourself a note pad to keep with all your medical notes. Before any appointment jot down a list of any medications and doses you are on (they often ask this at appointments), list any symptoms or problems you've experienced and then a list of questions you want to ask - take a pen or pencil with you to jot down the answers.

The BLT page also has a Patient Charter page which details the level of care you should expect with liver disease and also has a list of questions that you might want to ask as regards future management of your condition. britishlivertrust.org.uk/li...

All is not lost, my hubby was diagnosed with decompensated cirrhosis (bleeding from varices) and other complications back in 2012 (not alcohol related in his case), he was listed for t/p in 2014 but stabilized enough that he no longer met the need criteria for transplant. 2021 and he's/we've been off climbing mountains in past few weeks and he remains stable. (Jazzjam has mentioned that my hubbies consultant has patients on his books who have had a cirrhosis diagnosis for 20+ years who are nowhere near deaths door nor needing t/p).

If you get a grip of the cause of liver disease and look after yourself there is no reason why your liver can't stabilize, you've obviously not detailed further symptoms you have but if you are still working and going about daily life then you are better than many.

You need to check out the fluid in the legs situation and ask about referral to a liver dietician who can help make sure you are eating correctly and fuelling sufficiently. When your liver isn't working properly your body can't store and release energy as a healthy liver does so food as fuel becomes important plus low salt.

Best wishes, Katie

Foxdud profile image
Foxdud in reply to AyrshireK

Thanks for your reply I am trying to eat healthy with a low salt diet as of yet I’ve not been prescribed diuretic/water tablet but it’s something I’ll look into I’m trying to find as much information as possible and the Blt is a massive help … once again Thankyou

Trust5 profile image
Trust5Administrator in reply to Foxdud

You may have already called us but just in case you didn't know - we do have a free telephone helpline open Mon-Fri from 10:00-15:00 0800 652 7330. If you think it would help you could speak to one of our liver specialist nurses.

regards

Foxdud profile image
Foxdud in reply to Trust5

Yes I have called and will be calling again Thankyou your a great help

Dan2434 profile image
Dan2434 in reply to AyrshireK

Absolutely loved your reply, I wish I’d spoken to you last year when I too was diagnosed with cirrhosis. I stopped drinking and am on a low sodium diet as advised through dietitian. I was diagnosed with decompensated cirrhosis with the swelling (asceties) and varices and was also told it was looking like I would probably have to go on the transplant list, my doctors have since said now I don’t need transplant I don’t meet the criteria I.e - I’m not poorly enough now. In a nutshell October last year was told probable transplant, now we’re in May 7 months later told don’t need transplant and that’s in just 7 months 😀👍

Hi , I was in your position just over 5 years ago and had decompensated liver cirrhosis. I stopped drinking alcohol with help from my family and friends . My journey since has been a really positive one . As soon as my body got used to not having alcohol my liver settled down but obviously it still has cirrhosis which will never go away but my life is normal and my liver is compensated . 5 years down the line and I’ve just had my first varices tied but all done successfully. I have a great life now and have never been happier especially mentally. I hope your journey goes well and try not to worry to much as it’s early days but if you have stopped alcohol that’s brilliant . Take care inwards and upwards .

Foxdud profile image
Foxdud in reply to Lilliebell

Thankyou it’s really good getting positive feedback from people who are in the same sort of position as me . Even this morning before I posted I felt there was no way forward now I’m feeling more upbeat and with a lot of hard work there is some hope by the sounds of it . And well done stay healthy and happy

Katewaj profile image
Katewaj in reply to Foxdud

Hi! I have similar story as Lillie. I was diagnosed 2 1/2 years ago, at age of 41. The first couple months were difficult and scary. I had ascites and edema in my legs. The edema went away after about a month and my ascites went away slowly but surely after 8 months, longer than my doctor expected but at least its gone! Life has been great and I feel so good that you wouldn't even know I'm "sick". Don't give up! Being diagnosed isn't the end all. Try to stay positive and keep up the good work! 😊😊😊

Can I ask how you were diagnosed? Is it purely on the basis on your blood test result or have you had scans, biopsy etc?

Foxdud profile image
Foxdud in reply to WorriedUK01

Had ultrasound and blood tests in hospital and bloods weekly since I came out had u/s and fibroscan in September when I didn’t have cirrhosis

WorriedUK01 profile image
WorriedUK01 in reply to Foxdud

Do you had abnormal findings though back in 2020 but continued drinking. So are you saying in September your liver was fine and in 6/7 months it’s now Cirrhosis?

Foxdud profile image
Foxdud in reply to WorriedUK01

Told me I had fibroscan results of 9.3 and was told to gradually cut down drinking with a view to stopping which I did and then had a relapse and ended up in hospital so no my liver wasn’t fine but not at the stage it is now , I hope that helps

Foxdud profile image
Foxdud in reply to WorriedUK01

If your worried about yourself or someone you know seek help sooner rather than later

Well I had fibroscan of 6.5 with liver pains and swollen ankles. Stopped drinking now since January. Had 2 ultrasounds which were clear and my bloods are ok but still worry it’s my liver.

My worry was you had a clear ultrasound and then later your told you have cirrhosis.

Foxdud profile image
Foxdud in reply to WorriedUK01

But I also carried on drinking for a while (not a good idea) and had the ischemic hepatitis.either way stay off the drink . Good luck I wish you well

Well done you! Life is wonderful. I have family members with chronic health conditions ( not liver) and the answer seems to be pace yourself. Good luck. May you enjoy every day and live well

Foxdud profile image
Foxdud in reply to Granvilleey

Thankyou

I can only give my sons experience. He is 30 yrs old and has alcohol related cirrhosis. He lives in the states but I have found this group to be full of information and support. My son went to the ER at our urging in November. He was swollen, jaundiced, malnourished and had abdominal ascites. He only spent 3 days in the hospital detoxing and they sent him home. He was so swollen in his stomach that he looked 8 months pregnant. He was so sick. He never drank another sip of alcohol. It’s been 6 months. He also had bleeding varices due to portal hypertension which was an emergency in March. They also drained his stomach in January.

Now the positive side...he has eaten healthy, stayed sober, and takes excellent care of himself now. He had his 4th scope last week. His varices are gone and his esophagus has healed completely. The “turtle skin” in his stomach from portal hypertension has improved greatly! His labs are normal and he’s feeling better. He does get tired easily but he is improving every day. They have given him an excellent prognosis as long as he lived a healthy lifestyle. It took years to cause the damage and it will take time for his body to continue to heal to the best of its ability.

My point...all is not lost. You have a future. You have every day in front of you sober and you are so much healthier now than you were before. Every day your body is healing. It’s adjusting. Give yourself grace and be very proud of all you have accomplished this far. If you need to rest...rest. Listen to your body. Advocate for yourself. You do have a future. Don’t let anyone take that from you. Keep on keeping on!

Foxdud profile image
Foxdud in reply to TN-Nurse

Thankyou for the reply and well done to your son and you I think sometimes people forget about the loved ones who are going through this as well

hello Mr....assume mr😉. all I can say is my own story .only 5 days diagnosed still very early days for yourself. u will probably feel very mixed up,I did. ye fella its been over two years now since I was rushed in with bleeding varices,ascites in to North staffs. yes i was malnourished....had no muscle mass at all. this is hard to say i stood alooked at myself in a mirror,while in North staffs hospital.....what a complete mess i looked,it still upsets me now. but listen fella,things improved,no drink.....well not apart from bloody sparkling water. i saw a dietician.....a great help.....low salt levels,lots of protein. bloods can vary,my gamma gt,was way to High,only a few weeks ago. they put that down to myself taking pregabalin on prescription from docs ...for my sciatica. also Mr....dont let any one judge ya,for your decisions . the thing that i have found is folk r way to quick to judge.....but fella there r people who do understand. talking bout long term have had to be drained a couple of times since leaving north staffs. also fatigue......oh crikey fella......tiredness,unbelievable. I'm still on ensure plus nutritional drinks,they help,as some days i don't really feel like eating . but ,just to say things can and do improve.....i have esld. just ask if u wanna know anything else. take care chris

Foxdud profile image
Foxdud in reply to redpoint72

Cheers mate and yes it’s Mr I asked the doctor to put me in touch with a dietitian as I also suffer with gout and she just said eat healthy !!! So no real help there and yeah fatigue is the big change I’ve seen plus legs swelling after work I’m on my feet ten hrs a day . I appreciate your offer I’m sure there will be questions I’ll be asking …. Cheers in advance and thanks for your reply 👍🏻

Don't want to frighten you but it is a horrendous journey but depends on how badly your liver is damaged. Mine lasted for about 3 years prior to a successful transplant and now enjoying my second chance.

Foxdud profile image
Foxdud in reply to A9KSY

Not sure how badly my liver is damaged but I am still working ,back at hospital next month so hopefully find out more

Wish you all the best.

HiI was diagnosed with decompressed liver disease,cirrhosis in Aug 2017,was given 6 - 18 months to live,not drank since & my last appointment with my consultant a few weeks ago,I was told blood tests are fine & the scan results showed no liver damage

So keep on with the no drinking,keep possitive,cut down on salt,,eat little & often

Take care

Foxdud profile image
Foxdud in reply to duggee1

Thanks for the reply amazing news for you well done that makes me feel more positive 👍🏻

I am so sorry you are ill. But sometimes in life we are perhaps given a warning. Our bodies give us such a warning that we need to change. The trouble with the booze perhaps is that it serves to paper over a lot of cracks but does not serve the body or the mind so well. The people on this forum can give you a lot of help but it might be good for you to ask your GP for a bit of counselling/psychotherapy. Talking to someone can make you stronger and help you cope with the tremendous changes you will have to go through . But be of good courage my friend. There is definitely help out there!

Foxdud profile image
Foxdud in reply to Kingsleybones

Thankyou

Montys profile image
Montys in reply to Kingsleybones

Beautiful 😍

Bro. Don't be tempted to drink. It will kill you if you do. A slow, painful death. Sorry to be blunt.

All the best bro 💪

Foxdud profile image
Foxdud in reply to Montys

Blunt is sometimes good 👍🏻

The 'shall I? Can I have just one?'Mentally it is as bad as the cirrhosis.

Got to have will power. I even sneaked out of hospital, when I was on my 'way out ' to get a drink from shop.

If this doesn't apply to you I apologise.

10 years sober now. But it was a torturous journey!

Stay healthy ✌🙏✌

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