Hi all. Diagnosed as above. Currently on large doses of water tablets. Latest blood test showed bilirubin normal so no jaundice. See consultant next week and many questions for him. Anyone offer any advise re questions. Had ascites last year and had lung drain last week which was horrible. Feeling pretty scared about what the future may hold.
Liver cirrhosis since March 2818 - British Liver Trust
Liver cirrhosis since March 2818
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Maxey666
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34 Replies
•
Hi Maxey, did they establish the cause of your cirrhosis? If they did then make sure you are taking the steps to reduce further damage.
Points of note for your consultation - make sure you are being adequately monitored going forward in that way any changes should be picked up and action taken in good time.
It is protocol for a patient with cirrhosis to have 6 monthly scans (usually ultrasound but some centres do CT) to check for changes in the liver and other organs. Also, 6 monthly bloods to check all levels including AFP (Alpha fetoprotein) which is a tumour marker and can be an earlier indicator of any HCC (liver cancer appearance).
You mention ascites which is a symptom of portal hypertension - have you every had an endoscopy to check for other symptoms of PH such as varices in your oesophagus? They should be checked for and treated as necessary.
Are you experiencing any issues with memory, confusion, concentration etc. Are you anything to help toxin build up. Most people start on lactulose to make sure they are going to the toilet and emptying their bowels regularly (3-4 times a day) to remove toxins.
Write down your current medications (doctor will ask for that at consultation), note down any symptoms you've been having and list your questions that you want answered. Keep the same notebook going for each clinic appointment jot down date, your weight when they measure you, doctors name that you see and any answers to questions and any other relevant notes. It helps you keep a record of your own health and helps you be organized and make the most of appointments.
Best wises.
Katie
Thanks Katie.
The cause is alcohol and haven't had any for 10 months. I was just a heavy drinker and had no issues with stopping. Diagnosed with 2 x grade 1 varices from endoscopy 7 months ago. Have no current memory problems just lack of sleep.
• in reply toAyrshireK
👍👍👍👍👍 Katie as per.
Hi Maxey, l think, if l was still in your shoes (l was there once) l would be wanting to know what stage of cirrhosis you were at? If we are talking end stage liver disease, then they'd most likely want to do regular liver scans just to see if there any signs of tumours. These are sometimes common, but don't have to mean cancer.
Has your consultant talked of a liver transplant? As this would depend on your current overal fitness, and of your life style.
Good luck, hope all goes well.
Maxey666• in reply to
Thanks Richard. These are both questions I have on my list for him. My greatest fear is will I get HE
How is your health now? Are you post transplant?
• in reply toMaxey666
HE is one of many symptoms, generally it comes and goes in episodes. It is mainly managed by a drug called Refaxamin. Tests can be done to determine the extent, another question.
Good luck with everything, follow all the medical advice and most people here can share first hand experience.
• in reply to
Markus - (and Maxey) not wanting to be obtuse ☹️ But seriously- as you know - lactulose is another medicine to help empty your bowels and if both Rifaximin and lactulose don’t work, or stop working, you get given the dreaded self administered enemas 👎🏻. Yes 👎🏻 But 👍 for the effect 😁.
Selim
• in reply to
Interesting Piles, not sure if I mentioned this before but I ditched the lactulose, my body craved fruit. Not only did it help with stopping alcohol but it had the enema effect. 👍. I did discuss it with my doctors and they were more than happy. We are not talking an apple a day or even the 5, more like the 50+.
• in reply to
Bet you didn’t tell doctors you were on 50+ . You must be very affluent 😁
• in reply to
Believe it or not, I worked up until the day of ‘the call’. Mostly from home, often from my hospital bed, typing with two cannula’s was tricky. The doctors were baffled, on reflection, so am I. Paid for the fruit though and yes, it a blurry expensive diet. Cheaper than the liquid one though. 🖐😂😂😂👍
• in reply toMaxey666
Yes, l had my transplant back in 2016. My HE damage does appear to be a permanent thing though, as l still get brain fog now and again. This however may just be down to old age, as l'm now 65 and have been diagnosed as being a grumpy old git. I have not drunk alcohol since 2014, and don't even miss it at all now.
I also have a problem with my writing. My brain knows of the word l want to use, but what l end up typing is something completely different. Even if l proof read something before l send it, my brain still doesn't always see the error. This is very frustrating, not only for me, but the reader must think me crazy.
Maxey666• in reply to
Hi Richard
Nothing wrong with being a grumpy git. I'm 15 years younger than you and am one. What stage were you at pre transplant? and how long did you have to wait on the list?
• in reply toMaxey666
It all depends on your diagnosis as to what your treatment is. I was end stage decompensated cirrhosis, Transplant was needed. The wait depends on your health, frame and blood group. I am unfortunately to be type B, so 19 months. On the mend now.
Good luck
Maxey666• in reply to
Thanks Snoutie.
• in reply toMaxey666
I had my variceal bleed in December 2014. I was diagnosed with End stage liver disease and cirrhosis at around this time. I had been referred to a local gastroenterologist down in South Wales back in 2012, this consultant wanted to do a liver biopsy, but my then GP talked me out of it, as he referred to this procedure as being unnecessary, evasive procedure that carried risks of internal bleeding. I wish I'd not listened to this Doctor as I'm now sceptical of what GP's tell me.
My liver went on to have five tumours. Two of these were of the right size to be burnt off using radiofrequency ablation. The remaining three were too small to be treated and they had to wait for these to grow bigger. These tumours can take a while to grow and in September 2016 I went on the transplant waiting list. I must have been one of the very lucky people as I got my phone call in less than four weeks after going on the list. Some people can be on the list for over a year.
I think once these tumours start to form, then a transplant is the only long term solution. I've put together my own website about alcohol-related liver disease and here I talk about Liver tumours and of ablation liver treatment: taep.co.uk/medical%20conseq...
I hope this helps. There is rather a lot of information about alcohol-related liver disease, not only about the medical consequences, but of other dangers and damages. Some have found this interesting, and my local gastroenterologist is referring some of her patients to it.
Maxey666• in reply to
Crikey Richard, you have been through it! I will check out your site soon but for now I'm having to process so much information I fear of going into overload. I'll report back on here after seeing the consultant on Tuesday with an update. Thanks again.
AmericanDemocrat• in reply to
Actually, Richard, I think all of your posts and comments sound intelligent and well-written. I don’t want to discount the frustration you say you are feeling, but please know that you sound perfectly coherent and normal to your readers. I hope this might ease some of your worry. 🌺
Well said American Democrat, I'm one too (American Democrat) that is. God Bless.
• in reply to
Richard I must be nearly snap with you on everything except
I’m 64
I’m a boring old F*rt - according to my daughter,
What else can I say 😁👍 well or maybe 👎🏻 Who knows - or cares?
Miles
Silly question - what is HE?
• in reply toCalvincat
Heptatic Encephalopathy caused by elevated ammonia levels, normally processed and disposed by a healthy liver. It translates as mental confusion. The ammonia builds up in the brain.
Hi maxey
I was in the same position as you back in 2008, ascites was awful , jaundice, tachycardia, malnutrition, bleeds, all from alcohol, I was In liver failure at the time , spent a lot of time in hospital, 3 drains done and on a high dose of spironalactone and ferusomide, on discharge I weighed 47 kg and I was looked after by my dad , I'm now 57 yrs old , and with a lot of ups and downs since then , I am now stage 3 fibrosis not 4 any longer, my liver function is doing great and has been now for 5 yrs , I stopped all alcohol and followed a low salt diet , healthy foods but I do eat way too much chocolate lol, it's just the start for you, but try not to worry about what lies ahead, focus on the now and listen to your consultant. Best wishes Linda xx
That all sounds very positive Linda. I just need answers to all the questions that I have. Best wishes to you too xx
• in reply toMillie09
Wow Millie that is so impressive!
Yoiks - 47kg, that’s half my weight and even I could probably have lifted you up if I was allowed to lol.
Really good job and so nice to hear what I would call a success story 👍.
Miles
Millie09• in reply to
Thank you miles ☺.
I am sure there are others out there that were in and are in similar circumstances to me , was a rollercoaster ride but by some miracle im still here , 10 yrs , nearly 11yrs on .. yes 47kg, could have blown me doen with one push of a finger, I'm way bigger now , but that's down to my other chronic pain and mobility issues.
Hope this finds you well
Linda x
• in reply toMillie09
Yes I’m mostly OK now thank you 👍😁.
Fortunately my pain isn’t chronic per se but my back is being a pain, literally and metaphorically 😁😁. But no op possible till end August earliest due to my phenomenal TP. (I like the word phenomenal- always reminds me of the Muppet Show fenomenum fuh fur de de duh etc - yoiks I’m quite normal really but going for a tooth out jobbie in 20 mins 👎🏻‘)
It’s good to be “here” isn’t it! 👍
Miles
My hubby was diagnosed with cirrhosis April 2012 following a massive bleed from varices. He has been t-total all his life and the cause of his was auto-immune. He was listed for transplant in June 2014 but delisted after 10 months because he stabilised. He lost his spleen following an operation to sort out aneurysms due to portal hypertension. He also had 42 varices banded to try and get rid of those.
He is compensated at present but is on lactulose and rifaximin to combat HE symptoms. No jaundice and thankfully no ascites.
He is back at the watch and wait stage, being monitored. Last ultrasound showed up 'something' - possibly just the benign hemangiomas which we already knew he had but is having a follow up MRI scan on 26th February just to check.
Just goes to show how different this condition is in different people.
Katie
• in reply toAyrshireK
Good luck with MRI scan Katie and hubby. When in hospital the last time with HE I was given a USS and they were told to look for a portal vein blockage. Despite calling in her senior they said they couldn’t see anything because it was all very difficult to see. I was told I could go home by the ward round doctor - funny he went round all the beds in the ward and was telling nearly everyone that. Yes I could hear - I mean it’s the day’s entertainment, isn’t it?
Anyway I said my notes said to look for a blockage in the portal vein and not being able to see clearly meant they weren’t sure there was a problem or not. Frankly he “stormed” (as much as they are allowed to do - I mean the cheek of me challenging him 😁) and three - yes 3 - days later I was given a CT or MRI scan. I haven’t a clue which I just can’t remember aaaghh HE. Anyway whatever it was they found a thrombosis soon enough. So I’m not the greatest fan of USSs - yes I know they have incredibly good uses but sometimes.....
Miles
Millie09• in reply to
Good grief miles!! . Good job you were on the ball 😳.
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