New 'cirrhosee' with reading of 75 on Richter scale! H E L P

[Iau1]

See my bio - recently diagnosed cirrhosis with fibroscan reading of 75. Gutted!Interested to hear from those who have, over time, reduced this reading/'score'.

Also keen to hear from those with associated eating disorders - e.g. gastroparesis (sluggish stomach) and best ways of managing.

Experience of transplants, including live donors etc???

As you can imagine, as a newly diagnosed 'cirrhosee', I am really gutted, curious and very afraid of what lies ahead!

I would welcome responses from those who have similar condition, but who can enlighten me of the pitfalls that lie ahead and of good news stories of liver regeneration or transplant options after a 'top' score of 75. What about 'live' donors too?

I very much look forward to hearing from you - thank you from the bottom of my heart.

[AyrshireK]

I guess you have had other tests/scans which 'proved' the cirrhosis diagnosis. It is possible that your 75 kPa result was potentially over inflated if you also had liver inflammation ongoing at the time - fibroscan can't tell the difference between actual fibrous tissue and inflamed liver tissue so if your bloods were elevated you probably have a combination of fibrous tissue and inflammation inflating your fibroscan score. It's actually pretty rare for cirrhosis patients to have repeat fibroscan - my hubby has cirrhosis and it was so obvious on scans and in bloods and symptoms that he's never actually had one at all.

Hubbies condition is due to auto immune liver disease and he went from initially decompensated in 2012 to compensated and although he was listed for transplant in 2014 he improved enough to be delisted 10 months later and is ticking along. Only in the past year have we seen any sort of marked increase in symptoms and his consultant has called him back over to Edinburgh out of the blue so we don't know what that implies yet.

As regards transplant not everyone is eligible, there are some things that totally contraindicate suitability i.e. ongoing alcohol, drug use, extra hepatic cancers, liver cancers that are too numerous or large and general health of a patient - heart, lung health, dietary status i.e. not severely malnourished. There are also some relative contraindications one of which is advanced age and some t/p units put an age cut off on this - as being older can bring with it other health issues which makes survivability of transplant a little less likely.

Transplant assessment is very rigorous and people only get listed if they are fully compliant with all that is asked, in people with alcohol related liver disease they have to prove a commitment to live alcohol free, it used to be a 6 months minimum before someone with ARLD could even be put forward for assessment but this guidance has changed though participation in some sort of sobriety support is usually demanded.

People can only be considered for live transplant if they are listed for a cadaveric liver as per usual protocols, live transplant does not circumvent the processes for transplant listing and surgeons will always prefer a cadaveric liver over putting a healthy person through an operation/donation which is not without risk. Some people can't actually have a live/split transplant in that it depends on body size etc as to what type of organ you can actually have.

Anyway you are at the beginning of what will be a long journey with ups and downs, get over this initial stage first, get yourself sober and well and take it from there. Make sure before you are discharged you get some good dietary advice to make sure you eat appropriately for your stage of disease and get yourself in as healthy a postition as possible.

Best wishes, Katie

[Iau1 in reply to AyrshireK]

KatieThank you so much for your helpful post, which I found very encouraging. I was heartened to hear that fibroscan is unable to distinguish between fibrous and inflamed tissue and that the reading might have been somewhat inflated. My bloods suggest a significant improvement in my liver function.

Interesing to hear that further fibroscans are rarely given to those diagnosed with cirrhosis. However, when I am eventually discharged from hospital (xurrently at 8 weeks) I will be required to a attend a hepatic clinic, where I thought tests INCLUDING a fibroscan would be undertaken. If, as you say, I may not be fibroscanned, would a private scsn be an option I wonder?

Thanks again for kindly giving your time to dhate your experience.

Kindest Tegards

Iau1

[AnxiousPete in reply to Iau1]

I think the policy on repeat fibroscans may vary from authority to authourity and depend on the consultant. My cirrhosis was diagnosed on a CT scan but I still had fibroscan and my hepatologist said we will repeat thay at 12 months.

[RugbyMama]

Excellent advice from Katie (standard!)

Hubby had fibroscan score of 64.4 so well up there. As we now know this may be due to obgoing genetic blood condition but he did have history of alcohol to excess also.

Have they done other tests to check for varices etc? With cirrhosis its often the other symptoms it causes (varices, ascites etc) that become the issue rather than the cirrhosis itself.

You could ring the British Liver Trust nurses in the morning, they are brilliant but as Katie mentioned transplant is a long complex process with lots of factors considered including age, how much external support you have, psychological assessment, how long you have been alcohol free, weight, general health etc.

[Iau1 in reply to RugbyMama]

Thank you SO much for your helpful comments.When I am discharged from hospital (been here 8 weeks already) I will be required attend a hepatic outpatient clinic for tests etc

Would they consider discharging me with varices snd acites as the thought of being discharged too early frightens me. Two patients with similar symptoms to mine were discharged prematurely only to be admitted as emergency cases not long afterwards!

This hospital in W. Wales seems obsessed with early discharge, presumably to make available beds to satisfy the growing waiting lists!!!!

In fact they wanted to discharge me after 1½ weeks until my better half strongly objected. They had't completed the test & diagnosis! How irresponsibe.

Thank you again for your time and helpful comments. I look forward to your further comments.

Kindest Regards

Iau1

[Taffypaul]

Hi laul18 months ago I was in hospital with a fibro score of 74. The max. I thought my world was falling apart my life soon to end and very worried. I had a scan six months later and it was 35.2. I was told that almost always these top of the range fibro scores are almost always false positives due to inflammation etc. I stopped drinking the day I got out, not had one single drink, I try to eat healthy lots of veg, water etc, I golf twice a week fot the exercise that's about 16km walk. Now I have no symptoms I feel good look tons better and I just get on with my life. So please try not to worry ( hard I know ) I and I'm sure others all went through the same thoughts you are having. There is light at the end of the tunnel. Good luck Paul

[Iau1 in reply to Taffypaul]

Thanks Paul - VERY encouraging. Since writing my post I was told that fibroscans can be inaccurate as they cannot distinguish between inflamation and scarring, which bears out your comment.

Thank you from the bottom of my heart for taking tbe time to reassure me Paul.