Dear all, just to introduce myself, I'm mid-forties, been suffering with fatigue for quite a few years, fatty liver and some scarring about four years ago but for complex reasons was never followed up. A heavy drinker as of two weeks ago, but now presenting with definite cirrhosis symptoms, including "liver palms", right side pain front and back, very frequent urination, shortness of breath, likely portal hypertension, no bleeds etc. Bloods are very high for ferritin (934), GGT 30, albumin 54, ALT 68. My symptoms seem to accelerate by the hour and GP has referred me for US, CT etc. but it will obviously be weeks before I get a fibroscan and consultant appointment. I'd like advice on how best to deal with the portal hypertension and everything else in the meantime, sometimes I feel myself slipping out of Stage 2 into Stage 3. On a more subjective note, I'm embarrassed and ashamed at the road ahead and what I'm going to put my beautiful wife and family through... Any advice would be most welcome.
New on here, terrified, possibly Stage... - British Liver Trust
New on here, terrified, possibly Stage 2 and would love advice
Hello Pellegrino, welcome to the forum, hopefully you'll find us a welcoming and supportive bunch.
I am puzzled as to where you are getting your feeling that you are slipping from stage 2 to stage 3. What are you referring to?
Depending on what scale being used then liver disease is usually split into 4 categories (this would be the Metavir scale and uses an F or Fibrosis grade).
F0 - No Fibrosis/Normal Liver
F1 - Portal Fibrosis without Septa - Mild Fibrosis
F2 - Portal Fibrosis with a few septa - Mild/Moderate Fibrosis
F3 - Numerous Septa without cirrhosis/Incomplete Cirrhosis - Moderate Fibrosis
F4 - Cirrhosis - Severe Fibrosis - End Stage liver disease
Cirrhosis is then categorized into four categories too.
Compensated Cirrhosis
Stage 1 No Ascites / No Varices
Stage 2 Varices / No Ascites
Decompensated Cirrhosis
Stage 3 Ascites +/- Varices
Stage 4 Bleeding +/- Ascites
You don't necessarily have 'definite' cirrhosis symptoms as some of the things you mention can occur in earlier stages of liver disease although if you've carried on drinking after your initial diagnosis of fatty liver with scarring then this may indeed have progressed somewhat.
Until you are able to have the follow up tests and definite diagnosis then the only self treatment you can really do is to cut out the booze and perhaps have a look at your diet and exercise regime to see if there are positive changes you can make there. There is little to nothing you can do (without medicine) to reduce portal hypertension.
I'll point you in the direction of good advice on British Liver Trust website and hope you can find some useful stuff there for self treatment in the interim.
britishlivertrust.org.uk/in...
britishlivertrust.org.uk/in...
britishlivertrust.org.uk/in...
There is absolutely loads of terrific information on the BLT site and if you have other specific queries them make sure you ask as we are also a gold mine of experience, information and support.
All the best, Katie
Thanks Katie for taking the time. My symptoms accelerate every hour not to mind every day.
Until I see a consultant the portal hypertension is what I'm most worried about -- is there anything a GP could prescribe?
I'm not sure how you come to the conclusion you have portal hypertension. My hubby had a massive bleed from varices due to portal hypertension - we never even knew he had liver disease let alone PH.
You would need a scan to check for portal veinous flow to give a definite PH diagnosis or an endoscopy to say you had varices or other side effects of portal hypertension.
Usual treatment for definite PH would be a beta blocker like carvedilol or propanolol but they wouldn't usually prescribe without knowing the full picture.
Katie
On moderate exercise I'm short of breath and develop "liver palms" within less than a minute. Indeed, any exertion now brings this on. I realise I'm probably months away from a consultant/all relevant tests. If there was anything I could do now to control this I would like to try. Would blood pressure medication help?
I think you need to see a doctor and discuss these symptoms further, they aren't necessarily liver related even if you do have liver things going on too you can't establish portal hypertension based on the symptoms described. My hubby has cirrhosis with definite portal hypertension but doesn't get out of breath with exercise - fatigued yes and his palms are generally just red and blotchy most of the time.
I am not saying you don't have portal hypertension but please don't just diagnose yourself based on random symptoms. Portal hypertension is a specific diagnosis related to the pressure in the portal veinous system rather than high blood pressure in the rest of the circulatory system. You'd need your doctor to check you over, what your normal circulatory blood pressure is doing etc. (hubbies is generally low & doctors wouldn't even prescribe him beta blockers for his PH).
See your GP for further advice, just a huge pity this is all happening at the current time. So many folks arn't having their other health conditions properly monitored or assessed just now.
Katie
Thanks Katie, much obliged. I recently had a bad experience after taking some Nytol (shortness of breath, raised veins in the back of my hands etc., , obvious that my liver couldn't clear it). I hope your husband is doing as well as possible. If anyone else has any general or specific advice to someone in my situation, I'd be delighted to hear it.
Hi Pellegrino, and welcome to our forum.
You say "likely" Portal Hypertension....was that an opinion of a GP, or have you just been consulting Dr Google? and worried yourself that you have symptoms of cirrhosis. Please keep away from Dr Google as he will have you booking your cemetery plot. Anxiety is very common here, especially with lockdown. I had my appointment changed to a phone one, and then cancelled altogether.
I have F4 cirrhosis, and have many of the symptoms associated with it, including PH and liver palms, If you had a fatty liver with some scarring 4 years ago, then it's a pity that you didn't stop drinking then, for your own sake. You must have been given a fibroscan for the scarring diagnosis, so what were you told at diagnosis? I have PH, and some varices, but, I was unaware of them until I had a gastroscopy. What symptoms do you have that indicate PH?You have had good advice from Katie, and if you need more, just ask.
Take Care,
David
I kind of slipped through the net regarding a fibroscan David, and as you can imagine I really regret that. My symptoms are increasing hour by hour, I'm now completely breathless and have a pain under my right ribcage which is spearing through me. Also the liver palms constantly. Is there anything I should do between here and when I get further scans etc?
PS -- I've also developed nausea this morning.
PPS -- I am particularly concerned about the acceleration of my symptoms -- is there anything I can do with diet that might slow this down?
These arn't typical liver symptoms, an increasing pain in that area and nausea perhaps points more to a gall bladder/gall stone issue. If you are that bad today then i'd be going to hospital.
Katie
Thanks Katie. My bilirubin, GGt etc is effectively normal, so I didn't think it was that. If there was anything I could do to slow down the progression of symptoms, that would be great. I'm degrading at a very, very rapid pace.
Hi , Katie is right. All through my journey with cirrhosis, I have never had nausea. I think with that degree of breathlessness and spearing pain under the rib cage, then, as Katie says, maybe you should dial 111 and see if you can get seen by a doctor.
Stay Safe,
David
Thanks David and Katie, it is very kind of you to take the time. I'm also very weak, although I have been eating normally despite absence of appetite.
PS - ALT is 68, ferritin 934 (so clearly not great).
I had nausea and pain under my rib. I had an inflamed gallbladder.
Thanks C, did you also have cirrhosis/elevated bloods, shortness of breath etc?
No I didn't. My bloods are fine. I was just letting you know wgat the nausea and pain might be. Gallstones can throw your bloods off too...
Thanks for your kindness C.
Hi again, I know it's all very frightening for you, especially as there is at present , limited access to medical help, but you really need to get a referral to a Hepatologist, and then you will get the definitive answers you need to put your mind at rest.
Take Care,
David
I know, I presume I'm weeks/months away from a referral. I appreciate all your time and help. I'm trying to think about what I can do in the meantime to alleviate/delay. Any advice is welcome.
With the pain you are describing today it sounds more urgent that you need medical help. If you are in the UK then phone 111 and discuss this with NHS 24. We must not ignore ongoing or emergency health at this time, 111 might arrange for you to see an out of hours doctor or attend A&E. A&E departments are now managing themselves differently so none covid patients are able to access services separate from covid ones.
Please seek help today if you are in such severe pain - pain as you describe has never been experienced by my hubby even with cirrhosis.
Seek help now.
Katie
Thanks Katie, will do.
Hi Pellegrino
I had all the symptoms and conditions that you are having now . I chose to ignore my Doctor and I carried on drinking to keep pace with my new husband. I had previously had Ascites and was put on diuretics and told by my liver specialist to avoid salt in any form. It was kept at bay, I carried on drinking until one day I suddenly started vomiting thick brown blood followed by spurting bright red blood. I was eventually taken to hospital ( we were in a remote part of the country on holiday ) and by that point they said there wasn't much hope as I was bleeding from every orifice ( bleed out) My burst varices were banded and my entire family called, I was given Morphine to get me through the final stage.
For some reason I survived, I should have died and every morning when I woke up in hospital, with numerous drips, many nurses and Doctors around me I had to double check if I was alive. I was eventually transferred into a non ITU ward and was nil by mouth for 2 weeks in case I needed to be rushed back into surgery. I had to have ascitic fluid drained from my abdomen twice, around 10 litres a time....when you see it being drained off into a bucket , believe me , you'll never want to drink a glass of white wine again.
That was 7 years ago, I survived and now I am super fine. I still have to take medication and will do for the rest of my life but that is no biggie.Sorry if this is a harsh post for you to read but you need to stop drinking forever, right now or you will die and if this helps you or anyone else out there then good.
If there is anything else symptom wise then please ask me but remember we are all unique and my and others symptoms may be different from yours.
Don't just sit worrying , talk to a professional and if you have stopped drinking then that is the most important step to take.
Thanks Liz, and you've obviously come through an awful lot. My last drink was on 11 April, I was almost teetotal before that for a month, so I'm not in a great way considering. I have no illusions about what's coming down the track. Thanks for being so candid, you're a very brave and decent person and I'm very grateful for your thoughtfulness.
The best you can do is make your meals with as many veggies as possible. If you get cramps at night drink 6oz of Tonic Water nightly (cures them). I have been stage 4 for at least 2 years with very little in the way of serious problems. Get your varices checked and lactulose to keep your mind clear and do away with the chance of a varices bursting (death sentence if you begin to throw up blood from one of these).
Many thanks Utep, how are the veggies best prepared? Has it been possible for you to work?
Can't work due to various other issues. The best way to cook veggies is steamed or even out of a can.
Hi. I was diagnosed with cirrhosis 3 yrs ago. I too was embarrassed, didn't want to waste the hospitals time on something I had bought on myself. I could not have been more mistaken. There is no blame attached. Luckily I have the love and support of a wonderful wife,without who I couldn't have got this far. I try to keep as much as I can from my kids. Be strong follow the drs advice and most of all stay off the drink. Good luck
Thank you for the sentiment Craig. Is there anything practical/medical that's been of most use to you?
Good diet. I'm not a great veg lover so I compensated with plenty of fruit. Snack before bed to keep the liver fuelled overnight even if it's a couple of biscuits. Plenty of water and don't be afraid to ask for support and advice
is travel impossible?
Not at all. I've had some of the best holidays I've ever had in the last 3 years. Insurance can be a problem but there are companies which offer policies without cover for liver related issues. I have found that lying in the sun drinking fruit juice is the best medicine I have had.
Thanks Craig -- do you have PH at all? Do you mind my asking what stage you are at?
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