Hi everyone. Newbie here! Very soon I will have my first appointment with a consultant since my cirrhosis diagnosis in July 2022. I was wondering if any of you have some good general questions to ask a consultant that I can take with me? I've thought of a few but as I'm new to all of this and am not sure what to prioritise or focus on any advise would be appreciated.
Also I must admit this diagnosis has hit me very hard, I'm very overwhelmed and anxious, and I have 2 mental health disorders that don't help. I think I need some support to improve my mental health. Is there a particular type of counselling or therapy for people in my position?
Ta muchly!
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We're sure members will reply with some suggestions soon. Until then, here is a link to some information on our website about preparing for appointments, including questions to ask your doctor, which you may find helpful:
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers). If you would find it helpful to speak to others with shared experience, you can register to join a group here:
It can be hard to adjust to having such a serious diagnosis - I know my hubby took a few years to accept he was so poorly - he having been originally diagnosed with decompensated cirrhosis completely out of the blue back in April 2012. Somehow you just have to learn to ride the roller coaster of ups and downs, good days and bad days. Hubby been compensated now for several years.
As regards questions to ask your doctor make sure you know where you are at as regards stage of your condition and also make sure you are scheduled to have all the appropriate monitoring and tests. The National Institute for Care Excellence (NICE) stipulates that the minimum monitoring for a patient with cirrhosis is 6 monthly bloods, a calculation of the MELD/UKELD score done with these bloods and a 6 monthly scan (at least an ultrasound if not better) so make sure those are in the diary. A regular endoscopy should also be carried out to make sure you don't have varices.
Another thing which we asked for but never got fulfilled till hubby was en-route to transplant assessment was an appointment with a dietician (preferably one with liver specialism) who can assess your individualized need based on current state of health, what caused you condition and what you need to do to keep yourself healthy and make sure you are fuelling adequately to prevent malnutrition and muscle wastage.
It is also useful to learn a bit about your condition so that you can ask pertinent questions of your doctor.
We keep a notebook purely for hubbies health apppointments and before any consultations hubby and I sit down and note down all your current medications (consultants have always asked us for this), any current symptoms or things which have caused you concern (no matter how small as these can help form part of the bigger picture) plus all the questions we want to ask. It's good that you are preparing these before hand but make sure you write them down as it's really easy when faced with 'white coat syndrome' to forget what you wanted to ask. It's your appointment so make sure you get all you can out of it.
Make sure to that you get copies of test reports - if you are going to be in a position where you need to claim benefits due to your ill health these are invaluable.
Hey Katie. Thanks for the thorough reply. I've made notes and will organise a folder for all my questions/appointments. Never heard of a MELD/UKELD score but I will definitely ask. I just know about ALT, ALP, bilirubin and albumin. Please can you explain what you mean by 'at least an ultrasound if not better' I didn't know there was another option. Sorry to be a pain....
You won"t necessarily get told your MELD score (model for end stage liver disease) or UKELD score (UK model for end stage liver disease) but your doctors will calculate them based on serum sodium, serum creatine, bilirubin and your INR. It gives them a guide as to how serious things are looking. A UK of 49 is minimum needed for t/p listing. Never been told hubbies score on 10 years.
Most people (my hubby included) just have an ultrasound for their 6 monthly checks but other folks get the slightly better & more costly CT scan. In hubbies case he's twice had to go for a follow up MRI to check up on abnormalities found on U/S.
Hey again Katie. Hope you and hubby are ok. Thanks for all the info. Strange that a MELD score is not necessarily told. Maybe specialists don't want to scare patients? Or it's a need to know basis?
It's a clinical tool and yes some people get hung up on these scores because it provides guidance on average life expectancy and some patients do get all anxious thinking a meld score of * indicates possible death in x years. It's best just to live life to the fullest without that sort of stress and concentrate on getting well and staying well.
Hello. I think you should ask your consultant to check the level of ammonia in the blood. Elevated ammonia levels are often associated with liver cirrhosis and can affect mental health. It would also be worth doing some simple psychometric tests to diagnose hepatic encephalopathy (HE), such as a number connection test for example. Proper treatment of hepatic encephalopathy can significantly improve mental health in patients with cirrhosis. And one more advice, do not try to remember all the questions to the consultant, it is better to write them down on paper before the appointment.
Hey Fibro2021. Thanks for the suggestions. I've added them to my notes for my upcoming appointment. I feel so sorry for my consultant. My notes are getting long!
Hey there. Welcome to the forum. I have had bad anxiety for a long time and is one reason I drank. I still have it but take medications approved by my specialist to help with it. I also do counseling. It’s quite scary to be told you have cirrhosis and I thought I was going to die in months. Of course that isn’t the case. This forum has helped me greatly. Try to stay positive it’s not a death sentence. I thought it was and my first few posts reflect that. I’m coming up on 2 years living with it. The most important thing to do is stop/get rid of whatever caused the disease. In my case it was alcohol so I quit.
Hey pushthrough. Thank you for your understanding words, it's a comfort to hear. I am doing my best to lose weight and eat clean as my NAFLD is the cause of my cirrhosis. Can't wait to talk to a dietician tho! Take care.
Hello love. Welcome!I completely empathise, I've been there....it sounds so scary....and it is. But you will over time learn more about the condition.....this blt forum has been so good....
Maybe a good idea to phone the blt nurses, they are so helpful and lovely, and can help to explain some of the jargon,that consultants write in correspondence....
I would definitely ask about seeing a dietician, that can help in alot of ways. I have always asked for my meld/ukeld score ,when having my 6 monthly bloods taken.... .so that my gastro consultant can inform me of any changes, although I had to make a point of asking for it....but is done everytime now. It is alot mentally to handle,been there as well.....and can still have down periods. I've had alot of really good ,very time consuming counciling this year,it has helped tremendous .maybe have a chat with your gp about that one,im sure they will help you out.
There are some great folk on here to help, to give reassurance etc...so ask away!!!
Hope things go ok,when you have your consultation.
Hey Chris. Thanks for sharing. I will definitely talk to my doctor about getting some counselling or therapy. It's all a bit of a minefield at the mo. All very overwhelming. So much to take in. It's nice to know I'm not alone tho. Thanks again. Take care.
I think that’s a good idea, well done Chris for suggesting it. Three of us in my family have chronic illnesses and the diagnoses hit all of us like a sledgehammer. Counselling definitely helps. I also found that meditation and yoga helped me focus on now and not go spinning into what might happen and beating myself up for past mistakes. But I know it’s not for everyone, we all find what works for us
My anxiety definitely makes me worry and procrastinate so maybe some meditation would be a good idea. I don't have a clue where to start tho. Do you know of any decent sites or resources for meditation I look up? Something to help me live in the moment, take each day as it comes and focus on the good.
I had access to Headspace through my work’s employee support programme but there are lots of free ones available. For me it’s all about the voice - you have to like the voice you’re listening to. I also went to a local yoga studio where a guy did meditation once a week - it was lovely. Covid put paid to that though because I didn’t want to risk it being on immune suppressants.
If you fancy yoga I’d definetly suggest Yoga with Adrienne. She does armchair yoga and the full range. Just watching one of her videos makes you feel better! 😂
Welcome! I’m in the process of figuring out my situation with my liver. I was diagnosed with f3 fibrosis a year ago but fell off the health wagon a while ago. I’m now back with my doc and he has assured me that, liver disease, especially a cirrhosis diagnosis back in the day you’d be considered and in his own words “ f**ked” but he stated the liver is dynamic and with the right meds and lifestyle you can live a full life.
Not sure if you’re interested in a keto diet but I can only really lose weight on keto. I got concerned because I heard keto raises liver enzymes. I, like a lot on here love to google and that’s the latest I heard! I let him know my concerns and he assured me it was safe and that the benefits of a keto diet outweighed the negatives. Just in case you’re interested in it.
Thanks for the heads up NoRainCa! Glad to hear you're back on the health wagon and found a diet that works for you. I'm desperately trying to find my diet. Keeping it up long term will be the problem but I like a challenge!
I see a lot of comments here from people who have decompensated liver disease, it may be that you are still compensated, I would ask what stage you are at?
For example I was diagnosed stage 2 and already thought it was the end of the world, but actually I look back at that time with regret, because it's not the end of the world and you can still live a reasonably normal life at stage 2.
Endoscopy I had one, took 45 minutes, not 15-25 and the nurse really didn't know what she was talking about. I vomited for 4 months after this painless procedure where they stick a camera and oxygen feed down your throat to check for varices, they tried to tell me that I needed to have that done every 6 months as a tick box exercise, no way! By mutual agreement they agreed that I could just have regular liver scans, think of monitoring a baby in the womb, some cold gel on your stomach and they run the scan up and down taking video shots of your liver, from different angles for later analysis.
Liver biopsy, not sure if you have had that yet, usually used to confirm diagnosis?
10 years ago when I was diagnosed I read all the horror stories thought my life was over, it wasn't.
Back then I mainly suffered from exhaustion fatigue, enlarged spleen, portal hypertension. If doing exercise you work around these, no more crunchies or rowing, but plenty of other options.
I would therefore recommend determining if you are compensated and what stage you are at?
Hello there MrHappy1024. Thanks for replying. I will definitely ask the consultant when I see them next week if my liver is compensating and what stage I'm at. Not sure about what exercise to do. I love walking/hiking/mountain climbing so I guess I'll stick with that? I do have problems bending down, anything that compressed my abdomen so guess I'll have to have a think about types of exercise....
Mr happy thanks for posting a bit of your story. My 6 month is in two days and I always get anxious a week out even though I know I’m in good hands. Your post was very encouraging.
Hello, this forum is very supportive and you can always use the BLT website for many answers. I went with my husband for his appointments because I knew he was anxious and would struggle to remember what he was told. Is there someone who can go with you? The British liver trust web site has a page under 'questions to ask your doctor' which is helpful. Re support, your gp might be able to give you some advice as to local help for you. I found a counsellor who dealt with 'life changing illnesses' and anxiety, she was brilliant with my hubbie. Sadly she was private but I am pleased we used her, she did her councelling via zoom . The best advice I can think of is eat healthily, dont touch alcohol, avoid salt (as much as you can) and exercise if you can. Good luck with your appointment.
Hey Oldbits. I will definitely get my other half to come with me to my appointment. I'll see if I can find a counsellor with experience in dealing with life changing illnesses. Good tip! Thank you All the best.
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