Reduced cirrhosis symptoms

[NOGGLES2108]

I was diagnosed with cirrhosis in 2013. I had the usual symptoms such as fatigue, ascites, oedema , lower G.I. bleeding, nose bleeds, body hair loss but no yellowing of the eyes or skin. But now, the ascites has gone, the bleeds were brief, the hair loss has grown back, oedema is responding to a better diet and the energy levels are returning. Has anybody else experienced this? I was diagnosed on blood tests alone (no scans or endoscopy) and discharged by my specialist as I was "not getting any worse" Thanks in advance.

[RHGB]

You don't mention the cause of cirrhosis, so I'm going to assume it is down to alcohol.

Most people who give up alcohol and eat healthily will see an improvement in themselves. It varies from person to person, depending on their condition.

I would have expected them to do an ultrasound if they diagnosed you with cirrhosis and an endoscopy for the bleeds, I say endoscopy, but if they are lower GI bleeds not oesophageal varices then it would be colonoscopy. Definitely LGIB and not varices?

Blood tests are notoriously unreliable for confirming anything but basic information and I'm sure many here who have cirrhosis (including me) will say that their bloods come back fine, because they no longer drink.

So yes, it is possible for people to lose a lot of the symptoms and have some sort of normality return, but I would have wanted the gastro to have done some investigatory work to confirm the cirrhosis/bleeds.

[NOGGLES2108 in reply to RHGB]

Thanks for replying. Unfortunately there seems to be a lack of communication with my doctors practice, (he retired) and I'm beginning to think I may have slipped through the cracks. I think I'm overdue some information as to the severity of my situation. It was attributed to alcohol, but I was only drinking two nights a week (fri/sat) and work meant no heavy sessions (too tired fri/ 4 am start mon.) also admitted to hospital following a car crash 2009, and no hint of a problem, but I suppose it's cumulative and everybody's different. But you have prompted me to start pushing for answers, thank you

[RHGB in reply to NOGGLES2108]

Yes, you do need to push, it is not uncommon to get forgotten or 'filed'. After I came out of hospital, I saw a gastro twice and then it finished. I purchased my hospital records and it had copies of my gastro letters to my GP. I was meant to have follow up appts., an ultrasound and an endoscopy, none of which had happened.

If I hadn't have got my records, I would not have known this, neither my gastro nor GP followed this up, it was down to me to push it along.

Here's a top tip, never adopt the parent-child relationship with a doctor, you are their equal and speak your mind where necessary.

[bobbycat in reply to RHGB]

Quite right! My appointment with consultant has been cancelled three times, so I requested an overdue endoscopy, blood tests and ultra sound from GP.a few months back.....I was due another ultrasound two months ago but have to wait til I see the consultant ...it's getting me unsettled and worried that I could have another bleed .

[Porphyrogennetos]

Hello Noggles,

my case is equally puzzling.. I was dx'ed in 2015 with ethylic cirrhosis based on ultrasound, labs and tense ascites which had gone on its own even before I came to see the liver chap. So I never had paracentesis done.

First ultrasound showed a highly fibrotic, most probably already cirrhotic liver with mildly irregular borders, irregular lobus caudatus, mildly inhomogenous texture, slow hepatopetal flow, mild hepatomegaly, enlarged spleen of 15 cm etc., rarefied upper liver veins,countless cysts in the kidneys and some small ones in the liver.

Second ultrasound showed moderate chronic liver disease (whatever that is) with spleen of 13 cm, mild hepatomegaly as well as some small hyperechogenic space occupying lesions which needed further exploration.

So I was sent for an urgent CT scan with and without contrast, indication being 'hyperechoic foci in a cirrhotic liver' or similar.

That took some time, but not more than eight months. I had the CT scan done in October and was given the results during my appointment in January with the hep. Hep had told me that he'd call if he saw something important in the radiologist's report.

Actually he did not call, but I was all of November, December and half January in doubt if he might have just forgotten.

The radiologist's report speaks of a liver that preserves its normal size and contour. Minimal signs of chronic liver disease. Spleen normal. Splenoportal system normal. Gallbladder normal. Countless cysts in the kidneys. Numerous lesions in the liver parenchyma non of which shows any behaviour of HCC. The lesions are small cysts, possibly a case of biliary hamartomatosis (that is von Mayenburg complex or whatsoever they call it). Everything else unremarkable.

Impression: polycystic kidney and liver disease.

My hep, in his report mantains the dx of ethylic cirrhosis, but does not want to see me until fall, orders no imaging (which means he abandons the normal protocol) and orders me to see the nephro guy as he says he does not understand enough of PKD which probably is a domain of the nephrology, becoming usually symptomatic in the affected kidneys.

I haven't had any symptoms since 2015 when I swole up terribly, had clotting troubles, lost 30-40 pounds etc., was jaundiced and thought that I was about to meet my Creator.

But then again, I had suffered a fall exercising early in the morning before this whole liver failure issue started. Obviously, I mentioned that to the docs, but they probably booked the info under 'filthy drunkard falls down while staggering home from the pub.'

I wish they could review my dx and at least skip the 'ethylic' part. The nephro guy, first thing he told me when he studied my case was something like 'boy, I say, you sure liked to drink'...

Sigh.

P.

P.S.: I so wished to know what 'minimal signs of chronic liver disease' in radiologist lingo might stand for. Is that fat or fibrosis or what?

[Porphyrogennetos in reply to Porphyrogennetos]

Oh yes, forgive me, rhe second US 'demonstrated normal hepatopetal bloodflow, normal splenoportal system etc.'

P.

[NOGGLES2108 in reply to Porphyrogennetos]

Thanks for replying. It sounds like we both need to start pushing for information, at the very least, for peace of mind. Good luck

[Porphyrogennetos in reply to NOGGLES2108]

Personally, I feel overwhelmed whenever I have an appointment/audience with the hepatologist. There are so many folks who are much worse off than myself, so I feel it would kind of abusive if I insisted too much. I am robbing the time of those sicker than old self.

I am usually invited to stay away from the internet when I try to ask questions. (Or I simply forget to ask when it is my turn.)

I am handed over my latest lab results or radiologist's report, and I am simply not sharp enough to understand everything at once. It takes me days to work myself through the blood values, and I am simply not trained to understand the big picture, as I do not know how the different labs are interconnected between each other.

I guess it is not expected or even desired either, that we as patients understand our disease. Best we do what we can, exercise, healthy food, no self-medication or booze, low sodium intake. And that is all.

P.

[NOGGLES2108 in reply to Porphyrogennetos]

Might I suggest you write down your questions as you think of them, including an explanation of your test results, and take them with you, along with a loved one, for moral support. And remember, the doctor is providing a service, and is accountable. If you scroll up, I received some excellent advice regarding doctors from RHGB. Good luck

[7265sunlower in reply to Porphyrogennetos]

Hiya. P. That's how. I feel in the dark my doctors surgery.changes the doctors ever y other week an nothing. From the hospital doesn't. Seem to be passed on but reading some of these responses. Iam going to push for clearer answers when I see my specialist. In September. Then bk again in December. For another. Us scan hopefully I will get some proper answers. If they have the time for me hope you too are keeping. Well porphy x

[Steven57uk in reply to NOGGLES2108]

Last year was diagnosed with cirrhosis.was very scared packed in drinking.2 months ago had lfts done again doc was happy with them,although DRI nking on and off

Still scared ,worry worry worry over cirrhosis,so went to aa.

Not working.doc never sent me to see any liver specialists.

At my wits end.any advice please?doc doesn't seem to worry.

At first I quit for 8 months.I really can't handle pressure of any kind,any advice please?

[7265sunlower in reply to Steven57uk]

It is very hard I stopped. And started. Several times had the dts. Blackouts.feeling sick I havnt had a drink in just. Over a year but I still dream iam having a drink an going to buy a bottle. Of wine it plays on your mind so Steven don't give up we all support one another here best of luck getting sorted. X

[Steven57uk in reply to 7265sunlower]

trouble is i dont think i will ever be sorted,i suffer with depression as well.

i have tried everything to stop,i have even tried aa for a few months,but the thing is it makes me think about drink more,thsn trying on my own.i feel in a no win situation,i have quite a few drinks writing this but,i am a bag of nerves without iti am totally lost as what to do.

because at the moment now i feel fantastic and can do anything i need to do with the utmost confidence.

please get back to me with any thoughts,thanks.

[7265sunlower]

I know. The feeling Steven it's seems like a downward spiral I too am on antidepressants. An you feel as if you can conquer. The world with a drink but. When you sober up it's nerve racking that's wot I find I never went to get help with it but I felt so guilty for letting me son down we have a fantastic. Relation he is my world I used to hide it from him but he would find it. Now I've realised I got too much to lose he means the world to me the drink never affected me bringing him up even being on my own. I've him so much so I prayed to my mum I. Believe. She guides me so for myself. An my son I found. The willpower. To cut down and stop I been off it now just over a year an its still hard going. Iam only 52 an I want to spend time with my son as long as I can I wish you all the best Steven your not on your own so stay strong an you will get there in the end x