Firstly let me congratulate and thank you for some inspirational and informative posts on here, I have been reading them with interest everyday. Today after waiting ages for test results I decided to see the consultant privately and he has confirmed that I have cirrhosis, from what I gather from the scoring he mentioned the lower end of the scale. He said that it is likely to be Non-alcoholic related type and on Monday I have an NHS endoscopy booked as following a trip to A&E for chest pains I had a bleed from somewhere after they gave me anti-coagulant for a suspected blot clot on lung. This was later dismissed following an MRI). Its frightening isnt it? Im 57 and in remission from Bowel CA (7 years) and wonder why this now... My question is does anyone on the forum have any experience of associated heart or kidney disease following diagnosis. My bloods at A&E were elevated for troponin (not by much) which measures heart damage etc and I have also noticed that my pee is very pale and I have mild lower back pain.
Also I asked for a fibroscan at the NHS hospital and he said I didnt need it as he already had the diagnosis, I thought from reading experiences on here that it would be a reassuring way of measuring any improvement or god forbid the opposite
PS Ive taken onboard alot of information regarding diet etc - so thank you!
PPS I just read back my post and I sound cool calm and collected ...I am not right now x
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LHR007
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My journey first started with sudden blackouts, and I got referred to a cardiac consultant. My bloods showed no increase in troponin, so therefore no heart attack. for which it is a marker. After 3 years with a heart monitor inserted in my chest, and showing no arrhythmia, I was then referred to Gastro, where bloods, US and a fibroscan showed F4 cirrhosis. My capsule pain from cirrhosis is always attributed to heart problems, by my hepatologist, which I know it isn't, after over 3 years of 24/7 monitoring, with 3 monthly downloads of the data collected.
Pale pee shows your well hydrated, which is good. I, like you have been denied a second fibroscan, for the same reason, but it would give me a much needed psychological boost if I knew my liver had not deteriorated further, after 3 years of a healthy lifestyle.
Hi David and thanks for the reply, its interesting that I have read a few posts about capsule pain, I was told that my Liver and Pancreas were normal size... what causes capsule pain and what does it feel like? I agree about the psychological boost, when you are trying so hard to help yourself. Thank you for sharing your experiences and I wish you well x
There are a few of us here who have capsule pain, and for some like me is constant. The liver does not have any pain receptors, so it can't cause pain by itself, but there is a capsule surrounding the liver and spleen which can. It's called the Glisson's Capsule. In my case, with my liver being enlarged, and my spleen being twice the normal size (19cms), they both put pressure on the capsule inside my ribcage, which can't expand, thus causing all round pain. In particular, both sides and back high up. Just for fun, I also have a trapped sciatic nerve in my lower back ( a rugby injury from my youth). The capsule pain is difficult to treat as painkillers for people with cirrhosis are limited, because some are bad for our ailing livers. Just as a guide, paracetamol, amitriptyline and codeine are OK, but in reduced doses. Ibuprofen is a definite no no, as are any anti-inflammatory meds.
Sounds rough, I used to take alot of Ibuprofen for joint pain at night which would wake me without them. I wish I had known alot of things with hind-sight. I really had no idea about risks. A year ago I was taking a really strong combination of antibiotics for a skin infection...I feel at the moment I really want to know why I have this but the Docs dont seem as inquisitive as me. I assume I probably never will. Interestingly I have had abdominal scans for the last 7 years quite regularly as recovering from bowel CA. The consultant said he would try to look at these and wonders why nothing was picked up on. Which makes me think that whilst being very ill with a virus in 2018 it started then. Anyway enough about me, I hope you are feeling comfortable today and I pray for good results all round for everyone. I have absolutely no one to talk to about this.
Thanks for asking. I had my usual sleep pattern last night, and got about 3 hours in total, not good, but par for the course for me.
Just be mindful that cirrhosis can be caused by meds, as well as alcohol. There are many here that can bear testament to that.
We have to be really careful with meds, as some GP's are not specialists, so don't realise the problem we face.
Please don't be sad about having to handle this alone. You are now part of our community, and have a lot of help,support and knowledge from fellow sufferers to call on when you need it.👍👍👍
Thank you David I really appreciate that. On Friday the consultant who couldnt see me till Feb (NHS) but saw me privately on Friday told me that I had 'several years' totally freaked me out. I had an endoscopy today and no sign of any varices at all in throat stomach or top of intestine. He had diagnosed Portal Hypertension - I may post a question asking if varices can be anywhere other than that and I can I ask for information asking where the MRI said I had Portal hypertension ie is it always in the same place or can it be anywhere on the portal vein. Im sorry to hear about your sleep pattern, I was on steroids this time last year with a diagnosis or sarcoidosis which looking back on was probably not that but liver related and I know what its like to be up all night however not for the length of time I imagine you have had to endure it.
do you have a good medical support group ie GP, consultant?
Please don't get freaked out by guesses of life expectancy. I know it is worrying, but cirrhosis can be halted, but not reversed by good management. You don't have varices so you are not what is called F4 stage, sometimes called End Stage, like me. Portal hypertension is raised blood pressure in the portal vein that takes blood to the liver, from the spleen and bowel, so with liver damage, the blood can't flow as freely, causing back pressure, and sometimes, varices. I have portal hypertension as well. If you look on the BLT website, there is lots of info to read on cirrhosis. I forgot to say in my last post , that cirrhosis can also be caused by Hepatitis.
Unfortunately my GP and Hepatologist don't show me the care I would have expected, so I am thinking of changing both.
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