Please let me know if this doesn't belong here (and apologies in advance if that is the case)! I am trying to get more information about my dad's cirrhosis and what I should be expecting.
My parents are protective but as an adult child I would appreciate any insight you all can offer. I know that he has cirrhosis and I am told it was caused by fatty liver disease. It was discovered when he had a UTI. I also know that at this point he is too well for a transplant. They initially thought it was liver cancer. He has had bloodwork done, a CT, and an endoscopy that I know of. I think mum said that he did not have esophageal varices, but not 100% sure. He is going back for an ultrasound in 6 months...I was told this was so they could keep an eye on everything, but reading here I'm seeing it could also be a test for HCC? Are regular tests standard after diagnosis? Does this sound like compensated cirrhosis?
After diagnosis what made you all feel most supported? Anything I should be on the lookout for? He is taking some time to process but I want to be prepared to best provide support.
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BlackHearth414
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Hi there Black Heart, I can not offer any advice as I am quite new to the site as well. What I can tell you is you can get loads of information on this site and so much support, for you and your Dad.
Hi BlackHearth - yes the 6 monthly ultrasound scan is absolutely normal once diagnosed with cirrhosis. A cirrhotic liver can be slightly more prone to the development of HCC and monitoring this regularly means any changes in the liver should be picked up soon enough to allow effective and early treatment. The regular scanning also keeps an eye on other organs, checks for presence of fluid, portal veinous flow and more.
My husbands consultant has patients who have had a diagnosis of cirrhosis for well over 20+ years which isn't causing them issues or putting them close to needing a transplant. As has been pointed out cirrhosis exists in two categories - Compensated where it is still able to carry out the majority of its 500 (and certainly the most important) functions - the major problems come when the liver becomes decompensated and that's when it is more serious and potentially life threatening when it can't even fulfill it's major functions.
Minimum monitoring for Dad should be 6 monthly ultrasound scans, 6 monthly blood tests to calculated (UKELD/MELD scores - these relate to how well liver is working and prognosis based on results) also a blood test called AFP (Alpha-fetoprotein) which is a tumour marker. When my hubby was first diagnosed with cirrhosis in April 2012 due to Auto-Immune liver disease I found the BLT pages which Trust5 has provided links for were brilliant for providing the back ground knowledge needed.
Best wishes to you all, fingers crossed Dad remains stable for a good long time but if he needs transplant and is eligible he gets his chance.
Katie - as per - another one of your informative posts.
Do you know I went through the whole liver process including the t/p and no-one ever mentioned compensated or decompensated to me - not once. In fact I still didn’t know what it it meant after seeing it for first time on here when I joined a couple of months ago 😁. Being a lazy so and so I never looked it up - I mean if no-one mentioned it in 4+ years it can’t be important can it 😁. But I now know what it is thanks to your post. So now I’m a wise old man. Well certainly old but lets cross out the wise 😁.
Thx Katie
Miles
I have compensated cirrhosis and have regular ultrasounds and they are not looking for HCC (whatever that is?). Ultrasounds can be used to look at all sorts of things:- size of liver and coarseness, is it getting bigger or staying stable or even smaller; also gallbladder and other organs may be looked at. They may also look at the portal vein and the blood flow through this. Or they may be looking for ascites. What they look for on an ultrasound is very much related to whatever the patient presents with and is then monitored.
Compensated cirrhosis can become decompensated, hence looking for oesophageal varices. If varices are present, then they will decide if they need banding- essentially tying off the vein and stopping the blood flow through it, so that it cannot rupture later and lead to bleeding. Decompensated cirrhosis can become compensated again with the right treatment. Presumably since your father has been told it is as a result of fatty liver disease, then he will be given advice on how to alter his diet.
I have been decompensated twice and at this point you are very ill and I was hospitalised on both occasions, so more than likely he is compensated at the moment. People can live with cirrhosis for many years and without the need for a transplant. I have AIH - an autoimmune disease and there are people who have had cirrhosis for over 20 years and no transplant. (also with AIH)
Regular monitoring is normal through blood tests and ultrasound. The frequency of this will depend on how often they feel your father needs monitoring and won't necessarily stay the same throughout treatment. Initially it might be fairly frequent, but if he is recovering well and responding to treatment well, then frequency will decrease. However, blood tests frequency may well depend on medication he receives as some require regular bloods to be done.
For support get a good GP who will listen and answer questions. Use the BLT website for information, (Google is alarming and at times inaccurate) they have many leaflets, but I have never used them, and since I don't have the same condition as your father, then I can't comment on what is available. Also use the search bar to the right of the page for more specific information as there will be many previous posts that will answer future questions you may have. I find my GP is my best support and also having a good relationship with any consultant you may get referred to, but I have to admit, my GP is my first port of call. If you can, encourage your mum to write down questions and any answers. In my experience everyone appreciates it and active participation in arming yourself with knowledge is encouraged.
HCC is Hepatocellular carcinoma which is the most common type of primary liver cancer in adults - your 6 monthly ultrasound scan and AFP (Alpha-fetoprotein) blood test when you have cirrhosis is indeed to check for presence of any changes in the liver including potential tumours as a cirrhotic liver can be more prone to HCC. Yes it also checks portal veinous flow, presence of ascites, changes to spleen and other organs but primarily it is to check for HCC and allow early and effecting intervention.
Auto-Immune Hepatitis patients are less at risk of HCC than those with liver damage due to other conditions related to drink, the viral hepatitis's and conditions such as haemochromatosis.
Katie
in reply to
Hi MC
I’m very wary of Ultra Sound Scans and the portal vein. I was in hospital for yet another HE bout and I saw my notes and it said look for thrombosis in portal vein. I was sent for USS where the operator and her senior colleague said they couldn’t see the portal vein completely. The ward doctor then tried to send me home saying nothing was found. I told him, much to his visible annoyance, that not being able to get a good sight of the portal vein was not the same as there being nothing there. I was reluctantly then sent for a CT scan. Surprise surprise they found a thrombosis!
Miles
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in reply to
Hi Twosmiles, I have to say that all of the u/s people I have spoken to have been very helpful at telling me what they can and can't see and when they have been in doubt, have asked for advice from another colleague. I hope it stays this way. I guess sometimes they may not be able to see things because of gas or fluid obstructions, but good for you asking for further testing- clearly there was something wrong and they needed to find it. Face pulling and verbal objections from medical staff is something you have to get used to though isn't it unfortunately. Hope you are feeling much better. Incidentally, how did they deal with the thrombosis? All the very best
in reply to
Hi again MC! What is u/s please? Aha got it now - Ultra Sound 😁. Yes I agree I try hard to get used to some things but sometimes it’s not easy 😁
Aha the thrombosis was solved by a simple t/p.
😁😁😁😁😁😁😁😁😁😁😁😁😁😁😁😁😁
Miles
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Hi Katie, as far as I know I have never been checked for AFP, so I will have to ask about this. The HCC is also interesting as no-one has ever mentioned this to me either. Thanks for your input
Just as a by the by, I don't get given regular UKELD scores either. Sometimes they do them and other times they don't. I have access to my notes at the QE, so can see when they are done. Unless........ they are doing them and not including them on the letters to my GP, but that doesn't make any sense (well not to me anyway!)
We've never been told hubbies UKELD either - even when he was on transplant list. UKELD is a mathematical equation which takes into account your INR score, serum sodium, serum bilirubin and serum creatinine scores. It is something they are meant to calculate to monitor overall cirrhosis progression.
Yep, HCC is why a cirrhosis patient has the 6 month scans and you should also be getting AFP checked (although like I say, slightly lower risk with AIH than some other liver conditions).
NICE (National Institute for Health & Care Excellent) Guidelines state :-
"Surveillance for hepatocellular carcinoma
This quality statement is taken from the liver disease quality standard. The quality standard defines clinical best practice in identifying, assessing and managing liver disease and should be read in full.
Quality statement
Adults with cirrhosis are offered 6-monthly surveillance for hepatocellular carcinoma.
Rationale
Cirrhosis is a substantial risk factor for hepatocellular carcinoma. Hepatocellular carcinoma develops quickly and may be asymptomatic until it is advanced. Regular surveillance of adults with cirrhosis at 6 month intervals helps to ensure that it is detected early. Treatment can then begin promptly, which can improve the person's chances of survival."
You are in good hands at QEB - probably the best as regards AIH - and no doubt they are doing all the screening that is required.
All the best, Katie
Hi Katie,
I have been told my UKELD, but as I say it seems a bit hiss and miss. I did look up to how to calculate it, but they don't always include my INR score, so I am unable to do it myself for this reason. However, I know the QE team are clear on what they are doing, so I trust them to keep me informed as and when they deem fit. I don't need to worry about things unnecessarily- I'll let them do that!!! I guess my take is- I can't alter what is going to happen, I can only deal with it is as best I can. In the meantime, I try to stay as fit and healthy as possible. Unfortunately, this isn't always enough, but it's all I can do. I hope you are as well as can be expected. Thanks for your responses
I was in a similar position. Too well to be put on the transplant list yet a transplant was my only solution since my liver was beyond regeneration.
The advice from the British Liver Trust suggested above is very good.
When he does get listed you will meet a coordinator. They are wonderful and offered all kinds of support to my kids. They helped me through both before and after transplant.
I changed my diet to reduce my intake of toxins and tried to stay strong so that I would survive major surgery.
It’s a strange situation - struggling to stay fit whilst waiting to get sick enough to be allowed on the transfer list. I trusted my doctors and followed their advice.
I considered things from a practical point of view. My liver was not working well. What is its function? To remove toxins. What can I do to help? Reduce intake of toxins. I stopped alcohol, cut out salt, reduced fat and sugar.
I’m now 1 year post transplant. I understand the priority system. There are more sick people than organs, and doctors & facilities, available. The sickest must get operated on before the less sick.
The only way forward is to make more organs available, increase numbers of doctors and facilities, and improve health information to prevent people becoming ill with avoidable diseases.
Good luck.
Well I wasn’t offered any alternatives except the inference that do nothing and maximum of 2 years if lucky 😁. BUT mine was well up the portal vein and could not be operated on independently YOIKS..... so impossible, I suspect, for any of us to comment on your case!
I am livelier than I’ve been for absolutely years and also no hangovers, some memory 😁 and some - not a lot - money 😁 YIPPEE
Miles
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Aha that’s fine MC. Not sure what’s fine but couldn’t think of anything else to say 😁 except you too have a good ‘un.
twosmiles may i ask you what were your symptoms of having thrombosis in your portal vein? thanks and if thrombosis was in the splenic vein what would be the symptoms?
in reply to
Hi Mozz
Well first of all I have no medical expertise at all so this is my understanding from what I was told!
The thrombosis was stopping the blood from passing through the liver. This meant that the blood was not being “cleaned” i,e. Toxins were finding their way around my body, the most devastating being ammonia getting to the brain.
Ammonia in the brain leads to Hepatic Encephalitis, HE as it is called because its short and sweet (except HE isn’t short, and its certainly not sweet! In fact, now I have learnt, it can cause lasting brain damage.) Maybe I was lucky, or there wasn’t much to damage 😁, but I feel OK 😁.
HE symptoms can be mild, from just feeling a little unclear about things and some memory loss - I think this is what people call slang wise “brain fog” (well that’s what I call it 😁). This can have many uses and can often get you out of trouble with your partner if you say something that they don’t like! You just say “Sorry it’s the Brain Fog again” . Generally it works a treat .😁.
At the other end of the HE scale you effectively go completely “ dolally”. When this happens you often end up in hospital and you don’ t even remember how you got there “coming round” very slowly after several/many hours. I have been in hospital, like loads of others, many times from 3 or so days to an extreme case of it with complications of nearly 3 weeks. Mostly I got taken to hospital by family but once I was being so obstreperous (it took three of my family to “drag” me from the bedroom) and I went to hospital by ambulance, blues and twos apparently, but to this day I can’t remember any of it!!
I bet you just wanted a succint answer 😁 but sometimes I get verbal diarrhoea (sorry - too much detail, Miles!).
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