help please

[Sealeaf]

My husband was diagnosed with decompensated cirrhosis with child c11,Ascities and H.E. This has come as a terrible shock .He has the first telephone consultation tomorrow .Please advise what questions I should be asking

[AyrshireK]

Hello Sealeaf, welcome to the forum, sorry to hear of hubbies diagnosis especially seeing as it has come so suddenly and severely. My hubby was diagnosed with decompensated cirrhosis completely out of the blue back in April 2012 - in his case he had a massive bleed from burst varices and we never even knew he was poorly with liver disease - in his case it was due to auto immune hepatitis.

The British Liver Trust page on cirrhosis will give you good back ground information and the page on the patient charter will provide an outline regarding the level of care someone with a liver disease diagnosis should receive.

Do you know the cause of hubbies cirrhosis? That is key to knowing how to manage the underlying cause and try to halt further damage going forward.

If he has ascites you'll want to know what the plan is for managing that, is he on diuretics or is a programme of draining planned. You need to know the process for arranging a drain if he has a sudden or large fluid build up because that can become a medical emergency.

Is he on medication for the symptoms of Hepatic Encephalopathy? The usual treatment is Lactulose in conjunction with Rifaximin and he needs to be moving his bowels frequently.

If he is showing signs of malnutrition and muscle wastage he'll need support with a diet plan, ask about access to a liver specialist dietician as managing his food for fuel is vitally important to prevent muscle wastage.

Child Pugh score of 11 putting him into Child Pugh of C puts him at the more severe end of cirrhosis, is transplant a viable option? Obviously this is dependent on cause of the cirrhosis, age and any additional health concerns.

I'd ask about the likeliehood of a face to face consultation and possible time scale for that, when will next bloods be done, when will next ultrasound be done, has hubby had an endoscopy to check for varices in his oesophagus? He'll need one if one hasn't already been done.

Lots of stuff to learn, if you educate yourself about the condition you are better placed to get the most out of medical appointments.

BLT pages on cirrhosis, patient charter, HE and living with a liver condition are all excellent first steps.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

Best wishes for tomorrow,

Katie

[Richard-Allen]

One of the questions that rarely gets asked in cases of Hepatic Encephalopathy is how much brain damage is being caused. As you most likely know, HE occurs when the liver is unable to process and make safe certain powerful toxins in the body. These can then leak out into the blood system and travel up to the brain.

The word Hepatic means “of the liver” and “Encephalopathy” means “brain damage”. So these two words put together simply mean brain damage caused by the liver. Some GP’s just see this as being a liver-related issue and treatment is to try and stop and control these toxic chemicals from forming in the first place.

There are certain stages of brain damage to having HE, and each person should be scored accordingly. However, not many doctors or gastroenterologist carry out this particular test as they see brain damage as being outside of their medical area of expertise. However, a hepatologist may order up this test.

Please mention this to your consultant. The name of the test is called, “The West Haven Score”. It is now recognised as being an approved test for identifying the amount of brain damage that has been caused by HE.

As this is a telephone consultation, I would ask the consultant how they can go about arranging The West Haven Score test. If anything, the consultant will be impressed that you know of such a test.

For further information please see: nice.org.uk/guidance/ta337/...

The other question you might want to think about is about your husband’s driving license. In some cases, the doctor will inform the DVLA of his diagnosis, but ultimately it is the responsibility of the driver to notify the DVLA of any changes in their medical condition that may have an impact upon their ability to drive. (Some people think this should be down to the doctor to do).

If a person fails to do this and was to carry on driving that could get into serious trouble. It should also be noted that if a driver was to continue to drive, then their motor insurance becomes invalid. They then face the possibility of further legal problems. Sadly some of us on this site have had to go down this road.

I wish you all good luck for tomorrow.

Please let us know how you get on.

Best Wishes

Richard

[Hidden]

Hi Sealeaf and welcome to this forum. I can see that you have already been given helpful links to the British Liver Trust which may be of use. At the bottom of the Patient Charter, is a link to 'Questions to Ask Your Specialist' which you may find useful as a prompt. If you think it would be helpful before or after your appointment, either yourself or your husband can phone the nurse led helpline on 0800 652 7330 which is open from 10-3. Good luck for your husband's appointment tomorrow.