I am a newby with my Hubby with cirrhosis

[JandD]

My husband has been diagnosed with cirrhosis having been taken to hospital as an emergency with breathing problems, severe chest pains and abdominal swelling.... He has never been a drinker, tests have proved negative for Hepatitis and fat. The doctors are treating him with diuretics, and have told us that it will take some time for him to get better. I am so worried about him

[AyrshireK]

First port of call for advice on cirrhosis is the British Liver Trust Website and downloadable literature at:- britishlivertrust.org.uk/li... I found it invaluable when my hubby was diagnosed with cirrhosis completely out of the blue after a massive upper GI bleed from varices back in 2012.

Hopefully your husband is going to be seen by a gastroenterologist or better still a hepatologist for follow up treatment and examination as to why your husband has got cirrhosis. Once a cause is identified it might be possible to treat, slow or even reduce some of the damage. My hubby is t-total and his cirrhosis was identified as having been caused by Auto-Immune Hepatitis. It is important that as well as treating your husbands current symptoms they do identify the cause of your husbands condition.

It's a terribly scary time and I remember it well, my hubby spent 3 weeks in hospital at his initial presentation and I well remember the horrifying thoughts and worries I went through back in 2012. Hubby is stable now, he was listed for transplant for a while but improved sufficiently to get removed from the list and we now just live the life we can day to day.

Wishing you all the very best of luck, you've come to the right place for support and shared experiences.

Katie x

[JandD in reply to AyrshireK]

He is being seen by a gastroenterologist that is were they have been doing the tests....he has had a CT and an MRI...they do not appear to know what is causing his condition, they said he is clear of Hepatitis, the fluid sample they took from his tummy is also clear....so no cancer.... He has had loads of blood tests. I guess I am going to just learn some patience....thank you for responding Katie..xx

[Swood3154 in reply to JandD]

They never figured out what caused mine. They suspect chemo treatment that I had for breat cancer 25 years ago.

[JandD in reply to Swood3154]

I am sorry to hear that, but as my hubby has never had chemo, that's another possible cause off his list....Hope you have recovered...thanks..

[AyrshireK in reply to JandD]

They are probably going to need to do a liver biopsy, it's a quick procedure and relatively pain free where they take small sample from within the liver to look at what it going on from a cellular point of view.

There are many causes of cirrhosis and it looks like a few have already been ruled out - Viral Hepatitis B & C, fatty liver and booze SO they will need to examine the tissue of the liver to look for possible auto-immune conditions of which there are a few also hereditory conditions such as Haemochromotosis, Wilson's Disease and others - these lead to a build up of iron in the case of haemochromotosis and copper in the case of Wilson's Disease. There are also conditions such as Alpha 1 Antitrypsin Deficiency & many more which you can read about on the BLT website. Although hubby is showing some advanced issues they can hopefully stabilise him and do the tests which will identify cause and once that's addressed then hopefully you'll see some signs of recovery.

It's good to forearm yourself with some knowledge then you can ask questions. Don't be fobbed off with watch and wait and if you feel your gastroenterologist isn't completely confident on the liver side of things ask for referral to a hepatologist.

Have they done an endoscopy yet to look for varices in his oesophagus? The Portal hypertension which is causing his ascites can also lead to these so he should have a check a.s.a.p.

The whole of the British Liver Trust website is a good source of information on the various conditions.

Best wishes, Katie xx

[Bermuda1]

I agree with Katie, there are in fact over a 100 ways to get cirrhosis, not just the ones that frequently get mentioned. It takes time to try and find out why and in some people it is still Cryptogenic, which means they never found the reason , although that is a small percentage. I am sure in years to come they will find many more reasons, and incidents , and genetics which contribute. Until then we wait.

Often there may no be a mixed bag of reasons , even if they state a single one. I am borderline auto immune, they say alcohol as well, but then found I was born with a very narrow and meandering. Portal vein ( limiting blood supply) , and have gut related issues. My family genetics are a mess with auto immune diseases on both sides.

Not only chemo treatments, TB , and some psoriasis treatments can lead to liver damage , as well as the bog standard, NSAIDs and paracetamol, and some high strength anti biotics taken longterm. Certain cures, like the Fontan procedure , this is for children born without a ventricle in the heart , they often have organs in a mirror , or back to front fashion too. In the last 5 - 10 years some people who have had this procedure have gone on to develop cirrhosis, only cure being a heart transplant as well as a liver in most cases.

As I said we wait.......

[Paulineunderstand]

This is a great place to get help. I just want to say hang in there. It will feel so slow whilst all the tests are happening... and it's a complete roller coaster, for both of you.

[Paulineunderstand]

Also I presume that they have ruled out heart and there was a test which confirmed the cirrhosis... such as a fibroscan?

[AyrshireK in reply to Paulineunderstand]

JanD's hubby has had a CT scan and an MRI scan so the diagnosis should be pretty well conclusive. Not all hospital's have fibroscan and the MRI will be far superior in seeing the liver size and texture. My hubby has never had a fibroscan and yet has a confirmed cirrhosis diagnosis.

[JandD in reply to AyrshireK]

That's correct.....BTW we are Joyce and David.....hence the JandD.....xx

[Paulineunderstand in reply to AyrshireK]

Admittedly the mri scan was described as "poor quality" but I thought a fibroscan or biopsy was needed to be certain? They couldn't diagnosis my boyfriend with the ct or mri scan. But then they did tell him three times it wasn't his liver based on ultrasound and blood tests, so maybe it was particularly hard to spot.