Hepatic Encephalopathy (HE) Advice for Newbie

[paul1]

Hi there, this is my first post, so hope someone can help.

Last November I was diagnosed with HE and prescribed Rifaximin. Ammonia level was 185, which I'm told is very high but nothing to compare against. My care was also transferred from my local hospital to the nearest Transplant Centre.

At my last appointment I was informed the transplant was probably too risky due to complications caused by Myelofibrosis (MF) and Portal Vein Thrombosis, so it looks as if they are just going to keep me on Rifaximin indefinitely.

I'm still in my 40's (just), and since diagnosis I have lost my driving licence and now on the verge of losing my job, so it really has had a massive impact.

I therefore wondered if anyone has experienced anything similar (particularly interested in anyone suffering with both MF and HE) and were there any other treatment options if transplant wasn't an option.

Many thanks in advance,

Paul

[Bootandall]

Hi Paul, welcome to the forum! Sorry l don't have any specific medical advice except to say, transplant is not an option for me either, besides it's kind of considered a last resort. I take rifaximin and lactulose to keep HE at bay.

It's also important to drink enough clear fluids, eat small meals often that are a combination of carbs and protein, and cut down drastically on salt, sugar and fat in the diet. This helps the damaged liver do it's jobs.

Can you take a bus or get a lift into your job from someone you work with? Maybe arrange a vanpool that might benefit others as well? As I am currently looking for a job, I need to be careful to get one on the bus line, just in case.

[paul1 in reply to Bootandall]

Hi there, thanks for your note and sorry to hear you have HE too.

Work-wise I'm quite lucky as I work from home, but have to visit clients 1-2 days per week. However I've become quite forgetful, struggle to remember things (even when I take notes) and get confused easily. As my employer doesn't want me meeting clients like this, they put me on light duties last November, but they are becoming impatient and want someone else to do my job on a permanent basis.

I have got used to catching buses, getting lifts, etc, but I do miss being able to jump in the car at a moment's notice.

Anyway great to meet you and hope to speak again soon, Paul

[Bootandall in reply to paul1]

Ah, be careful sharing health information with your employer, I learned the hard way. l was happily working p/t (without health benefits!) and l was still fired when I temporarily couldn't work evenings. Thankfully the problem was only temporary, I was staying up practically all night, and going in to work after a few hours sleep. My employer claimed there were several written complaints from customers, but my ex-colleague assures me that was not the case. Due to lack of sleep, I was a little less energetic. I would get flushed and sweaty on deliveries, but figured that was normal for someone going from hot to cold temperatures with the a/c. Suffice to say, I don't think there was a customer service issue. It is possible of course, but I'm more inclined to think the stigma attached to people with cirrhosis was what did me in. I will NEVER tell another soul that I have anything less than perfect health.

[Barnetaccounts]

Hi Paul,

HE is a horrible condition that IMO really needs someone else keeping a close eye on daily, trying as best they can to identify changes no matter how subtle. I was diagnosed after a failed transplant, and have merrily gone about my business until 11 days ago. As is usual for me at about 6am I attempted to go to the loo only to find my legs refused to follow any instructions from my brain. I eventually gently slid onto the floor until my son came around and somehow managed to manoeuvre me back onto the bed where I am told I just blankly stared at the ceiling. My wife made various phone calls to the palliative care hub, my oncology team and they advised that initially I should be seen by the GP. Ambulances were called and I have been informed that it took 8 crew members to get me from my bedroom down 28 steps and onto an ambulance. I was rushed to hospital with a diagnosis of severe confusion brought on by either a urine infection or a major HE episode. It took 36 hours for me to regain some form of normality, and I was eventually transferred to the Royal Free on Tuesday evening, because they had been treating me for 5 1/2 years after initial cancer diagnosis. I was discharged on Friday having had some fluid drained from my tummy.

The signs were my eyes were rolling in my head, which I passed off as being incredibly tired, slurred speech. These were all noted by my wife and a week before the episode she had asked friends to just sanity check her observations and they concurred. So why should i need someone else to keep a close eye on me. It’s because left to my own devices I will always have an excuse. I can tell you that I had a resection, countless embolisations, nearly died on the operating table during my transplant attempt, spent 12 days in a coma and none of these were as scary as this episode. The thought of ending up in a vegetative state scares the life out of me. So Transplant or not, please take the medication as prescribed and if possible have someone monitor your daily actions because as much as Rifaxamin should control your symptoms, it is not a cure as I know only too well.

Good luck in the future

Ray

[paul1 in reply to Barnetaccounts]

Hi Ray,

Thanks for getting in touch and sorry to hear about your recent experiences. Although my symptoms have been noticeable to my wife and friends, they seem quite tame when compared with your recent episode.

Anyway, it's good to hear from you and hopefully we'll speak again soon.

Best wishes for the future,

Paul

[mncold]

Hi paul1,

My husband has cirrhosis and high blood pressure, he was diagnosed in his late 60's.

We don't have any experience with your other issues, but do with HE. He is on lactulose. I have noticed that in the UK many are given lactulose and Rifaximin together.

We live in the US and the rules seem to be different regarding driving. Hubby is still driving and driving safely.

Is the loss of your license due to the fact you have been diagnosed with high ammonia? I do know there are people on here who have managed to get their license back, but I think they may have been post-transplant.

Is there a patient advocacy group you talk to or even go back to your doctors and see what is up.

Best wishes,

Mary

[paul1 in reply to mncold]

Hi Mary, lovely to hear from you and I'm sorry to hear your husband is dealing with HE amongst other things.

I'm not sure what the norm is in the UK, as I was given Rifaximin when I was diagnosed and have taken it ever since.

I was advised by my specialist that I would need to surrender my driving licence, as HE would affect my cognitive functions/decision making and I was therefore deemed unsafe to drive. This is also advised on our Government Driving Agency website, so I don't have much of a leg to stand on.

I do find this incredibly frustrating as I've always been a safe driver who has never had any HE episodes behind the wheel, although I do feel very tired at times, so on this basis I can see their point.

I was under the impression that transplant represented the only possible cure for HE in my case (and hopefully the return of my driving licence). Now this is not an option, I just need to move on.

Anyway, great to meet you and hope to speak again soon.

Best wishes to you and your husband,

Paul