Two years ago I wrote quite a lot on here about ‘Feeling Unwell’. Since then I have had a diagnosis of Cirrhosis, Metabolic Syndrome, Hepatic Encephalopathy and some other relatively minor stuff. Many of you were very kind in your support and advice, for which I was so grateful. I won’t repeat it all again what happened back then, (it’s still available on here somewhere), but, the drama continues, My ‘bleeding from mouth’ problems still exist and now, 2 years after it started, and having changed my surgery, I have been referred to a Haematologist, at last but, I have to wait till December to see them. New blood test findings include abnormal IgA, IgG, Kappa and Lambda light chains, as well as other blood problems. Just been tested for anaemia which has come back normal. This is amazing considering the amount of blood that comes out of my mouth each day. I believe my treatment (or lack of it) has been poor, so I am going to tell my story, somehow, someday. Meanwhile, I’m nearly housebound now and quality of life very poor. If it were not for my husband and computer, I don’t know where I’d be!!! Any comments about my prognosis would be appreciated??? Clinicians haven’t got a clue! Many thanks.
NASH to CIRRHOSIS. What next??? - British Liver Trust
NASH to CIRRHOSIS. What next???
Hi Splodge60. I'm sorry to hear that you have such a poor quality of life.
I don't have any experience or understanding of some of the symptoms that you mention so I can't be of any help. Hopefully some other members of the forum who are more knowledgeable than myself may be able to comment.
I hope that the haematologist that you see in December is able to help you and answer your questions.
Wishing you all the best.
Alf
Rather than wait months to see the Haematologist I sent her lots of details about my bleeding problems. She concluded I did not have a Haematology problem and referred me back to GP. Meanwhile, during my recent sojourn in Hospital for 2 weeks, with lung problems, I spent one and a half hours trying to stop lots of blood pouring from my mouth. (Have photos to prove it). I also had my 4th DVT in my right leg which I’m told is now a chronic clotting problem. As I am on Warfarin for life, there is no further treatment for that. All the outer orifices of my body enjoy a good bleed now and then. My blood test results are mixed and I don’t understand them. If Haematologists don’t deal with such bleeding, what do they do. Who does deal with this kind of stuff is what I would like to know?????
Is it related to liver, diabetes and all the factors of Metabolic Syndrome??? Is it to do with Chest problems and just about everything else they keep diagnosing me with?
Hi Splodge,
So sorry that you're no further on with a proper diagnosis of all your problems.
Do you see a liver specialist or liver nurse at all? They could be the ones that could answer your questions.
If you spoke to one of the nurses on this forum they would probably be able to point you in the right direction of what to do and who to speak to.
There must be someone that can explain to you what and why these things are happening.
Best wishes.
Alf
Hi splodge
Sorry to hear of your issues that aren’t getting any better it seems 😕.
A while back I was speaking to “my”liver Consultant- actually not my usual one - about some of my other conditions and he said - I only deal with the liver. I asked who looks after you as a totality then? He said your GP. I was too polite to laugh but did say to him that I was on a loser there then.... Am I alone in thinking that a GP cannot possibly deal with the myriad of issuettes a lot of us have? There needs to be a holistic (hate that word, but it is appropriate) approach somehow and somewhere and by someone - but it isn’t in our NHS at present that’s for sure 😕. Having said that I think the NHS is brilliant in most other aspects 👍.
Miles
I have decided to be proactive and I’ve written to various people about the essential need for ‘General Specialists’ for those like you and me and many more who suffer from multiple health issues (both chronic and acute). NHS England produced a report on this very subject in 2015. As far as I am aware nobody in the medical community has implemented this at all in the UK. I need someone to ‘join up the dots’ but it just never happens!!!!!
Wow Splodge that is brilliant!! Have you had any answers back yet?
Miles
CCG don’t deal with my suggestions. That’s all so far xxx
Ah OK. Google says CCGs are local groups..is that right? I have never heard of these “Clinical Commissioning Groups (CCGs)”.
Miles
CCGs are the faceless bodies/groups who pay monies to GPs and hospitals when they need to continue in their role. They do act in a local capacity but I assume they may have a lot of clout in the wider medical fraternity. I assume that the latter need to justify their financial needs by how patients react to treatment as inpatient and outpatient guinea pigs. I doubt whether empathy, care and concern, etc have any part to play in their actual day to day work.
Hi splodge, like freddy I can’t offer any relevant experiences either but also echo the good wishes for finding out more in December.
Good luck.
Miles
thank you
Hi there
Getting a diagnosis is no longer an issue for me. I’ve got more than enough diagnoses to keep the NHS busy for generations to come. I now have a need to understand what these all have to do on each other, their interactions with each other, impact on me for the long term. My liver consultant (for example) told me a year ago that I have 10 years left living with cirrhosis. Where does he get his evidence? Based on what criteria???
How much would the other problems ‘impact on the cirrhosis???? The diabetes, the metabolic syndrome, the heart and lungs, the chronic bleeding and DVTs? Plus lots of other problems that make my quality of life very poor. I’m not really moaning Just frustrated that I know so little and get so little information from those clinics who deal with me, but I want and need to know why over everything.
Hello - I'm sorry to read how you are so poorly but not getting much advance in having a diagnosis. It seems a long wait to see a haematologist with such a distressing condition. Have you spoken to the specialist nurse on this site? It may be a help to you if you do - they can ask you more specific questions and offer you some reassurance from their wider experience. I'm glad you've got your husband and your computer. I bet he's chuffed you put them in that order, him first...
Keep in touch x
yes my husband is pleased xx
Thank you all for your kindnesses to me. After lots of your comments and advice, I went back to GP and made his life easy by just concentrating on the liver problems of Cirrhosis. He (being a Jnr Foundation Doctor) actually examined me thoroughly, do consultants do this nowadays. He concluded that he would send me for a full blood screening. I got my results which had 10 abnormal markers. The main theme running through all of them was severely low Vitamin D and Folate low as well. My blood platelets are low and red blood cells not working adequately. Result = anaemia!!!!! Is this cause or effect of liver disease/cirrhosis , diabetes, metabolic syndrome, heart and lung problems,,, as long as lots of other health difficulties as well. Been prescribed 8 doses of 20,000 Vitamin D3 plus Folic Acid!!!! Got to get them in a maintenance dose over the counter. I’m quite pleased with this result because I can now concentrate on improving my quality of life
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