NAFLD

[36wordsworth]

My wife has NAFLD. Never heard of it before. She’s had ascites fluid drained three times now, nearly 13 Ltrs a time.

Last weekend she had hepatic encephalopathy which scared me to death. She is 68 and now needs a TIPS procedure.

I’ve had to find out what all this means from the internet, we’ve not been told anything by the hospital. All I know is she’s very poorly and I just want to see her better.

[AyrshireK]

Hi wordsworth, very sorry to hear about your wife's diagnosis and complications. Is there any chance she'd be fit enough for transplant? The symptoms she has are suggestive of more advanced liver disease i.e. cirrhosis due to the NAFLD. If she isn't already being seen at one of the transplant centres then I would be pushing for her to be referred in order to be seen and assessed.

With already having ascites requiring draining and signs of HE she is evidently rather poorly. Transjugular intrahepatic portosystemic shunt (TIPSS) will potentially help with the ascites side of things but can also exacerbate Hepatic Encephalopathy.

I would be pushing for her to be seen at a t/p centre. Ok, not everyone is suitable for transplant and there is a very thorough assessment process to ensure the person is fit enough to endure the procedure and recovery and hasn't any other health issues that might contraindicate transplant. I've met a lady who was transplanted at 72 so age although a relative contraindication it is by no means an automatic cut off.

Best wishes, Katie

[36wordsworth in reply to AyrshireK]

Hi Katie. Thanks for the reply. To be honest the thing we want sorting out ASAP is the ascites problem because that’s causing a lot of discomfort. If that needs the tipss procedure then we need it . Hopefully that will buy us time for the longer term.

John

[Hidden]

Hi 36wordsworth

Welcome to our forum.

We are sorry to read that your wife is unwell. We have a lot of useful information and publications on our website that may be helpful to look at:

britishlivertrust.org.uk/in...

However, we would suggest that you consider making an appointment with the liver specialist and asking specific questions to them about the diagnosis, and clinical plan.

We have a nurse-led helpline that you may want to call for a chat? it is open 10am to 3pm Monday to Friday on 0800 652 7330

We hope you find our forum a supportive place to visit, you are not alone.

Warm wishes

Trust1

[RosaRugosa]

I was going to say the same thing as AyrshireK -- it sounds like the NAFLD has progressed to liver cirrhosis. I am in the U.S., so I am not knowledgeable about the prospects of a liver transplant in the UK.

A TIPS procedure is a big step. As AyrshireK says, it can make the hepatic encephalopathy worse. Before having a TIPS procedure, I would see first if there is some other way to manage the ascites.

I also have cirrhosis, which in my case is also a result of NAFLD (and its more serious form, NASH.) To avoid fluid retention, I follow a low-sodium diet and take a potent diuretic (furosemide, aka Lasix.) I also take another diuretic, spironolactone. If I am not careful about salt intake and taking my diuretics, my feet and legs swell up, often within hours of a high salt meal. (I have never had ascites -- but I had a episode of ruptured varices, which was terrifying.)

A lot of people with cirrhosis have substance abuse problems, which it sounds like are not a factor in your wife's case. That is good, as she can put her efforts into getting better! A lot of physicians are not knowledgeable about liver problems. It sounds like your wife's GP was not monitoring her closely enough. (I had a similar problem.) Your wife needs to see a GI specialist, preferably one who subspecializes in hepatology (liver problems.) I am glad you have found this forum. I think you will find some answers by using the resources posted by Trust1.

My very best wishes to you and your wife!

[upthereds]

Hi Wordsworth - its Non Alchoholic Fatty Liver Disease. I don't know how this differs from NASH. Alcohol is definately a no-no. Alchohol in the past is not generally blamed for this condition,but we were told it certainly did not help!! With regard to hepatic encephalopathy the most important issue to remember is that it is not the patients fault. Irrational behaviour, forgetfullness, falls,sleepless nights - they all try the patience of nearest and dearest. I've been there! If it's like this with you - shout for help - you can't deal with it on your own. Good Luck.

[36wordsworth in reply to upthereds]

Hi. The Hepatic episode has only happened the once and it happened overnight. She went to bed fine and deteriorated through the night. She was not far from being in a coma. Fortunately the hospital sorted her out and after 5 days she came home. Tired and weak but no confusion at all. She’s taking medication to prevent it happening again.

Alcohol was never an issue but she did have jaundice as a child.