hepatology appointment

[Disney2023]

first appointment with hepatology today I’m scared but hopefully will feel better knowing what’s what thanks for all the kind words on here

[Sophia1968]

good luck hun, I kvow how scary this all is, I am still waiting my first appointment, all I can say is make sure to write down and take any questions with you, these apptns take so long to come through and I would hate you to come out thinking “ I forgot to ask this” or “I should have asked asked that” I’m like this when I finally get a dr appointments now , I take a list …. Anyway try to stay calm ( not easy I know) and hopefully things will be clearer for you once you have spoken, take care and please let us know how you get on, good luck xx

[Disney2023 in reply to Sophia1968]

thank you there are so many questions nice to know are people who can relate to you xx

[Sophia1968 in reply to Disney2023]

I agree, it’s hard when no one understands, at least on here everyone does, I totally get the fears, part of me wants an appt but part of me wants to just put my head in the sand, fingers crossed you may find it beneficial as in it may not be as bad as what we imagine in our heads , take care lovely xx

[Disney2023]

Been to first hepatology consultation obviously didn’t want to be told I had cirrhosis but he said it was early stage and just carry on with life style changes I had so many questions but I understand they are pushed for time and cannot answer everything was told I would be sent for another scan and blood tests in 6 months and the plan is to try to save it getting any worse he seemed positive so I will have to take that on board and thankful it isn’t has bad as could be thanks for the support and best wishes for everyone else waiting results xx

[Sophia1968]

Oh bless you hun, I know it’s not nice to hear, but early stage is good and to send you away until 6 months shows they are not too worried, I would be happy with that, I’m scared because my report said severe, I’m petrified at what I will be told, can I ask did you have a fibroscan also did you have symptoms , try to relax and enjoy the rest of your day, and feel positive at this news because it really is a good place to be compared to where you probably imagined you would be , thank you for updating us xx

[Disney2023 in reply to Sophia1968]

no only had ultra sound and blood tests 3 week ago and while I was there her gave me a scan this morning no symptoms as such was found out while investigation for anemia but been having back pain for ages I had a gastroscopy and it was then they found I had portal hypertension so was passed onto hepatology I made the mistake off going on google and the symptoms lead to me thinking I was at the end of the road but according to the consultant it’s at early stage so I can only go on his advice even though it seems such a complexed illness with no straight forward answer to it I hope you too have good news xx

[Sophia1968]

honestly hun, it is so complex, I have learnt so much on here but also I kvow so little, I can see why people need a degree and more to deal with liver disease, thank you I will let you kvow, still waiting to hear but it’s only been two weeks , im surprised you only had ultra sound scan though, I thought that and ct scan were not good at diagnosing, I thought mri and biopsy were the main ones, along with bloods, just proves how little I know lol, but if you can see it on ultra sound why did they never tell me , they just have seen it omg the more I think the more confused I get lol, anyway enjoy your evening lovely xx

[Disney2023 in reply to Sophia1968]

I know people say ultra sounds don’t show everything but I’m putting my trust in him I feel well apart from discomfort in my right side and whatever there is going on inside my body there is nothing they can do at the moment it’s up to me to lose more weight and try to lead a healthier life style see if things improve there are lots of positive people on here who have been around for years and I’m new to it I will still worry it’s a uncertain illness he said the thing is we know what you have and they can see now how it progresses it was only picked up by a blood test for something else or I still wouldn’t know I have it not you don’t have every symptom x

[Sophia1968]

I know, it’s totally scary, at least we know what is going on and can try to do all we can, I wonder how many people are walking around with this who don’t even know and yes lots of positivity on here, they are an amazing bunch xx

[Disney2023 in reply to Sophia1968]

how did you find out do you have symptoms ? It as totally turned my life upside down but listening to people on here gives you hope and I am going to try to enjoy the time while I can otherwise I might as well not be here no matter how many tests there is you can only have what they give you well I can anyway xx

[Sophia1968]

totally agree, enjoy life and try to put it at the back of your mind, esp with low stage, it’s one of those things that is just part of us now I’m afraid…… I have had weird things like three random nose bleeds, I have spider veins and small red dots ( could be age though, who knows ) occasionally dark wee, pain in my back by liver area, just little things that I did not take notice of until now ( I assume everything is liver now) I had an ultrasound for something else and they pointed out severe fatty liver, I was sent for fibroscan and was not expecting the result anything over 12.5 is cirrohsis, I was 21.5 😱 I looked at the screen and said omg look at my kpa score, h3 said do you know what it means, I said yes cirrohsis, he just nodded sympathetically and said it’s cirrotic I’m so sorry, then the doctor report said sever liver impairment which sounded worse in a way, no bad signs as in yellow skin or ascites so I’m hoping I’ll be ok, waiting to see someone stresses me out though xx

[Disney2023 in reply to Sophia1968]

It’s the scariest thing I have ever known and it probably always be on my mind but lm going to try my best to stay positive my letter between doctors and consultant was written in the way they converse with each other but he said early stages no sign of cancer as of yet and I can only believe him for my own sake you stay positive too no one knows what the future holds it’s changed my life and won’t ever be as carefree as before but grateful at the moment a lot better than some people you take care keep in touch wishing you the best outcome when you go see you get your hepatology appointment xxx

[Sophia1968]

I agree totally, you do lose the carefree ways and the taking for granted , we just have to find a way of making this our norm now whilst still enjoying our life. Many on here have and hopefully that will be us one day hun xx

[lipstick20]

Good luck and write all your questions down, I went for mine last week and my hubby came with with me to support me me and also listen to what she said as sometimes it's hard to everything in on your own, so many take someone with you , good luck and fingers crossed all will be well x

[Sharonmcfarlane]

hi folks , can I ask is it likely to get cancer when you have cirrhosis … Take care all and it’s great support here .

Thanks Sharon

[AyrshireK in reply to Sharonmcfarlane]

There is a slightly increased chance of getting liver cancer when you have cirrhosis which is why all patients with cirrhosis should have (as minimum) a scan every 6 months (ultrasound is the usual though some get CT or MRI) and blood tests including AFP (Alpha fetoprotein) - which is a tumour marker. This regular monitoring should pick up any anomolies (lumps, bumps, lesions etc.) to allow early detection and early intervention. There are all sorts of means of treating cancerous tumours if they are caught soon enough.

Katie

[Greengal314 in reply to AyrshireK]

hi Katie,

I had the AFP blood test for the first time included in my last bloodwork and was negative. (Whew!). Is this something that is ongoing forward or just on a semi regular basis? I get bloodwork and ultrasounds every 6 months. No lesions.

Thanks!

[AyrshireK in reply to Greengal314]

These are the monitoring guidelines for cirrhosis as stipulated by the NICE (National Institute for Care Excellence).

1.2 Monitoring

Risk of complications

1.2.1 Refer people who have, or are at high risk of, complications of cirrhosis to a specialist hepatology centre.

1.2.2 Calculate the Model for End‑Stage Liver Disease (MELD) score every 6 months for people with compensated cirrhosis.

1.2.3 Consider using a MELD score of 12 or more as an indicator that the person is at high risk of complications of cirrhosis.

Hepatocellular carcinoma

1.2.4 Offer ultrasound (with or without measurement of serum alpha‑fetoprotein) every 6 months as surveillance for hepatocellular carcinoma (HCC) for people with cirrhosis who do not have hepatitis B virus infection.

1.2.5 For people with cirrhosis and hepatitis B virus infection, see the section on surveillance testing for hepatocellular carcinoma in adults with chronic hepatitis B in the NICE guideline on hepatitis B (chronic).

1.2.6 Do not offer surveillance for HCC for people who are receiving end of life care.

Oesophageal varices

1.2.7 After a diagnosis of cirrhosis, offer upper gastrointestinal endoscopy to detect oesophageal varices.

1.2.8 For people in whom no oesophageal varices have been detected, offer surveillance using upper gastrointestinal endoscopy every 3 years.

My hubby has a 6 monthly scan plus AFP bloods every 6 months.

[Greengal314 in reply to AyrshireK]

thanks for the very helpful guidance info Katie. It makes complete sense.

Have a great day !

[Sharonmcfarlane]

Your a angel Katie thank you for your quick response x