I've a fair amount of experience in academic research into routes to improve subject motivation, both to prevent a number of health conditions with similar causality, and to reduce progression, or reverse them where possible, once established.
For me, understanding exactly what is happening takes away a good deal of 'fear of the unknown', something that stopped me seeking help before finally falling over and being diagnosed with liver cirrhosis.
As a scientist I'm looking for understanding of my condition in more depth than is routinely offered during consultation, presumably, to some extent at least, because of time constraints.
I'm reasonably senior in my own field, I referee scientific manuscripts submitted for publication, and can make a balanced judgement. However, I have only basic physiological knowledge re cirrhosis. I'm not in hepatological research, and neither am I a physician. While there's plenty of scientific information available I can't evaluate it with any degree of certainty.
I'm looking for someone who can talk me through my current understanding, and improve it, to support my currently good level of engagement with my health, after many years of 'ignoring it and hoping it won't be problematic' (burying my head in the sand...). I now want to understand both the condition and to be able to discuss my own test results more fully. Has anyone had a similar experience, and, if so, could you point me in the right direction if so? I'm looking for a 'liver expert' of some sort, academic, medically-qualified, both, or by virtue of experience.
I guess I'm not alone in wanting to know more, I'd be grateful for any suggestions that anyone might have.
Apologies for the long-winded post and many thanks!
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DB50
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We arn't allowed to discuss individuals test results here as none of us are medically qualified to do so, however, we are allowed to share experiences and shared knowledge from the back ground of either having a liver condition or like myself supporting loved ones with a liver condition.
When my husband was first diagnosed with cirrhosis in 2012 I found (and still find) the British Liver Trust pages a gold mine of information and easy to understand.
They have one on cirrhosis and one on liver tests which might help explain some of the tests carried out if not what the results actually mean.
Thanks Katie - I didn't phrase my question very well at all, I'm afraid! I'll see if I can edit.
I'm looking for a hepatologist, GE consultant, someone suitably knowledgeable who'd be willing to talk through my (limited) understanding and answer some questions I have. I assume it'll mean a private consultation.
An example of the sort of thing I'm interested in might be reduced portal velocity, coupled with increased portal diameter - apparently quite strongly indicative of PH, but absence of evidence isn't evidence of absence, in this case, as I understand it. Also, implications of differences in fasting vs post-prandial velocity v time wave-forms. I'm a bit geeky anyway, and this is the sort of detail I'm after.
I'm very familiar with ultrasound as a technique, and interpret data taken on a different part of the body, but I'm not able to understand them in the context of the liver and associated organs.
When you get a scan, of any sort, ask the person carrying out the scan for as much information as possible without being a quizmaster. Usually something along the lines of "can you see any ascites" will get them to show you what they can see. Each time you have a scan, you learn a little bit more as each person tells you something different.
Also, read up beforehand and get a set of questions together that seem the most important at the time (you usually get 5/6 answered for reference) before seeing the Consultant (or speaking them on phone etc as at the moment). Generally I have found they won't volunteer information, but they will answer questions, so get swotting (Katie has already pointed you in the direction of some useful reading).
Thanks! Fair to say that I was unprepared for how readily the last radiologist answered questions I had, during the procedure, and I certainly hadn't prepared. I almost feel guilty asking at the moment, though, I guess they're fairly busy. I'll do my homework next time.
No problem. Usually you will have an idea of what they are looking for from the Consultant. Each scan type will provide different types of info and I find if you are friendly and not demanding, they are happy to help you understand what is going on. If they won't answer some questions, it's usually for a reason, so I tend to leave it alone then and wait for the feedback from the Consultant. Any other questions, just ask and the helpline could really help you out too.
I find it quite intriguing that an apparent scientist, diagnosed with cirrhosis ( I'm assuming alcohol induced, going by the 'tag') for many years, has only chosen now to find out about his disease and need to be "talked through it." I would have expected that over those years, living through the very many debilitating symptoms cirrhosis causes, your enquiring mind would have asked the relevant questions at the time of being treated for these symptoms at the very least. Cirrhosis is not the kind of disease you can ignore or "bury your head in the sand" about especially for years. However as Katie has said, the livertrust site and the NHS site has a host of written information regarding advanced liver disease which while reading, will fascinate and educate the most "geeky" of minds.
I think you've missed the point of my notes - and I'm hardly alone in burying my head in the sand. I did this until I (unbeknown to me) turned yellow, my GP found me in this state, and had me whisked into hospital. Cirrhosis is often asymptomatic in the early stages, as you'll be aware. I'm a good scientist, on the whole, but also a human being, with all the faults that go with it.
The level of detail I'm interested in would take years to acquire and would still require some practical experience, which I'm not in a position to acquire. I'm very familiar with the general facts available online.
I find your note unhelpful and suggestive of a lack of empathy. Please don't make assumptions about the cause of my disease state, that's rude.
I am slightly intrigued as to why you want psychological advice rather than detailed scientific information. Yet you are unwilling to disclose the cause of your cirrhosis? I had an alcohol related diagnosis, that led to transplant surgery. Both the diagnosis itself and the specific medication, come with a complex layer of psychological problems. I believe that whilst the medical treatment is well advanced, there is little understanding or even support in dealing with the psychological issues.
I sought the help of a psychologist after my transplant, to help me come to terms with the journey through this disease.
Sorry if my title is misleading, I was referring to the beneficial effect of detailed medical information on my own state of mind, i.e. removing fear of the unknown.
I'm not unwilling to disclose, though I chose not to. Since this is obviously an issue then yes, it was likely alcohol-related, certainly I drank far too much, and was concurrently severely malnourished resulting from a physical condition.
I also had/am having psychological help, for the factors that led to drinking too much, rather than drinking per se. I have been completely abstinent for well over a year now, and wish I'd done this years ago. Hindsight and all that...
We are all different people, I went along, drinking to excess, in the belief that as a professional person with a well paid, senior managerial job, I didn’t fall into the category of a problem drinker. So it came as a complete shock, when my lifestyle choices, caught up with me.
Only at that point, did I start to question the reasons behind these choices. As part of a alcohol related transplant, you are required to go through a difficult psychological assessment.
It simply is impossible to remove the fear of the unknown, there are no certainties. A positive outcome depends upon placing your entire faith into the knowledge and skill of the people looking after your treatment.
With a transplant requirement, there is no way to circumnavigate the NHS blood and transplant services.
I wish you every success and a positive outcome, it is definitely a difficult illness to deal with. Well done with your abstinence, it is certainly, the best decision you have made.
Hi DB50,
Welcome to our forum. We can’t recommend specific hepatologists or related academics, however, if you are in the UK you may want to consider calling our nurse led helpline tomorrow and speak to us?
Thank you - I'll do this. In a sense I want to know what questions to ask. I haven't found medics to be unforthcoming, once I've been in a position to do this.
I found that learning as much as I could via the BLT site, general other health sites and doing the liver courses I mentioned before I could make the most of hubbies appointments. Sufficient to ask the questions needed and keep the appointment relevant - ok we arn't asking for the absolute nitty gritty/scientific minutiae but the key things that we need to allow hubby to live his life with the condition he has.
You can get totally bogged down with all the facts and figures and it doesn't let you get on with life, hubby had decompensated cirrhosis when he first presented in 2012 - his due to auto immune hepatitis, he underwent transplant assessment in 2014 and spent 10 months on the t/p list before being delisted because his 'bloods improved' - at absolutely no point have we discussed scores, actual blood results, stages and scoring with doctors as there is no relevance to the patient who needs to just get on with living the best life possible.
We've had loads of posters come on here who have been told scores which are medical tools for measuring severity of the illness, then looking then up they see life expectancy figures and all sorts and they bog themselves down with those instead of making the most of every good day.
We always take a notebook with us with a list of current meds (the doctors always seem to take a note of this), any symptoms since last appointment and all the questions we want to ask. Some doctors don't volunteer stuff but we've found that all are very responsive when we ask based on our gained knowledge.
I wish you well on your quest for scientific explanations of the minutiae but don't waste your life on it, live life to the max.
Thanks for your kind words Katie, hopefully if, or when, I know I can do just that! The minutiae are important for me, but appreciate that it's not everyone's thing. Once I know enough to keep me happy I can put it in the 'outbox', though I'm hopelessly disorganised as a rule. That's how my mind works, different for everyone, though, I'm sure.
Initial fear of the unknown, associated guilt, so on, is how I ended up posing the question here. I'm prone to that.
I actually believe that the more you dwell on a condition you have the worse it makes you feel!
I really don't think it's actually useful to know every detail of what you suffer from!
It's good to understand how your cirrhosis can effect you and to understand the ways it can progress or even reverse in a lot of cases!
When you look too deep into every minute detail it takes over your thoughts!
My husband and myself have been through a very long journey with liver disease..he's had 3 liver transplants over a 20 year span and myself went through the journey of cirrhosis of which I'm very stable right now!
You always want to learn more about a condition that can potentially get worse over time and that can be useful but also can have the opposite effect by taking over your life!
Cirrhosis effects everyone differently depending on the cause but you can live a near normal lifespan if it can be controlled with abstinence or treatment if it's from other possible causes!
Being positive and living life is the best remedy!
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