Odema and diuretics

[Puggypip]

I was diagnosed last September with ARLD and had a severe attack of HE that I almost didn't survive. I'm managing to control this with meds but my partner sees blips of HE now and then in my behaviour. My consultant has stopped my diuretic because it's effecting my liver and I've blown up like a balloon! My feet have become really painful and working is almost impossible(my skin is really taught also so I find movement and sleep difficult). Does anyone have any advice? Any other way to get rid of some fluid? I'm at my witts end, thanks in advance for any advice 😊

[TT-2018]

It’s most likely that it is your kidneys that are being affected by the diuretics, your liver is already struggling. That was the case for myself and others.

It would be worth mentioning your partners comments about your behaviour, HE isn’t something that you generally recognise in yourself.

You need to request a paracentesis procedure, where they insert a large needle under a local anaesthetic and drain off the fluid. If you are not in hospital, it is normally done in the day unit. It does come with an infection risk, so every care is required. I ended up being drained every three weeks, normally between 8-14 litres a time, for over a year. I would book the next session, whilst I was in there. I would also book myself into the local surgery three days after, to have the nurse, clean and dress the wound site. You will find what timescale works for you but it does get very uncomfortable, so stretch clothing is essential. In summer you can wear sandals. Alas, whilst they can drain your stomach, gravity does it’s job and your legs and ankles swell up. There isn’t much that can be done about this.

For myself, things finally cleared up after my transplant.

I wish you every success moving forward, cirrhosis is definitely not an easy disease to live with.

[Richard-Allen]

Good Morning Puggypip. Your episode of HE is of concern as some of the damage caused to the brain can be permanent in some cases. As TT-2018 has pointed out, this needs to be treated. Sadly there appears to be a lack of understanding of this condition by some doctors.

The name “Hepatic Encephalopathy” can be broken down and mean the following, “Hepatic” meaning of the liver. And “Encephalopathy” meaning damage or disease that affects the brain. So, putting these two words together means brain damage caused by the liver.

The first thing a doctor will do is to try and prevent more damage from occurring by reducing the number of toxins being produced in the gut.

Neomycin can be used to inhibit the ammonia–generating bacteria (friendly bacteria). Rifaximin also decreases intestinal production and absorption of ammonia. Lactulose is also commonly used and this is a type of sugar that changes the acidity of your stools to help prevent the growth of bacteria that produce ammonia in the bowel.

HE episodes can manifest themselves differently from person to person. I edited a video of Charlie Hobson and his wife Angie talking about their experiences with HE. My own experiences were one of immense frustration and confusion: youtu.be/LdWhPUIWt1I(Not working as expected?)

Up to this point, HE is seen as being a liver-related condition. But very little is done to assess the amount of brain damage that is/has been caused. There is a scoring system that GP’s should be using when it comes to assessing and treating HE, But, this is rarely done. This is called, “The West Haven Score”. Here a person's mental state is assessed to the amount of damage being done, or that has already occurred.

There is a further test that should be carried out the test for Asterixis, (this is also known as the Flap Test). To test for asterixis, the arms are extended and the wrists dorsiflexed. The presence of asterixis is defined as a tremor of the hand with arm extended and wrist held back (dorsiflexed); tremor of hands and extended failure to hold hands in this position.

Because HE affects mental behaviour, some serious choices may have to be made. Firstly a person should no longer be driving, as they now pose a risk to themselves and other road users. It should also be noted that if a person was to continue to drive after having been diagnosed with HE, then their car insurance will become automatically invalid.

Sadly very little testing is done to assess the brain damage as GP’s simply see this as being a liver issue and not a mental one. For many people, HE damage can be permanent. I have spoken with Charlie and his wife Angie, and with others, and we all agree that HE symptoms continue to be present long after a liver transplant.

As I've said, we are all different and no two people are the same. So when it comes to HE one cap certainty doesn’t fit all.

West Haven Score Assessment

[Scrags64 in reply to Richard-Allen]

My mum has HE, but there has never been any mention of stopping driving or insurance being invalid. Wondering whether others have been told this. Thanks.

[Richard-Allen in reply to Scrags64]

There are two bones of contention here. Firstly, it is the driver's responsibility to inform the DVLA of any changes in their medical condition that impacts their ability to drive safely. There have been several instances where a person has driven on a motorway the wrong way and driving into oncoming traffic.

Secondly, many doctors who diagnose someone as having HE should tell the patient not to drive, and in some cases report them themselves, especially if the liver condition is alcohol-related: gov.uk/guidance/drug-or-alc...

The other point I wanted to point out, is that some people with say a grading of a 3 on the West Haven score, may not be aware that anything is wrong. They can become confused and uncooperative.

There was a sad case a few years ago whereby this poor gentleman who suffered an HE episode, was also having a variceal bleed, He didn’t see anything as being wrong, and refused all medical treatment. The ambulance crew left, and the poor man passed away later that night.

What I’m trying to do is to not only raise awareness of this condition but also to suggest that if someone score’s a 3. on the West Haven Score. Then a family member or partner/carer should apply to be granted power of attorney over the patient's medical and financial affairs. This way, that poor man could have been treated as his wife would have insisted he received all the medical treatment he required.

On the financial aspect, a person’s spending may become erratic and irresponsible i.e. emptying their bank account and then going to a casino. Power of Attorney offers an element of protection and could save a lot of stress and worry later on.

I should point out that these are my own personal views only.

[Scrags64]

Thank you very much for your prompt reply. My mum, actually has decided herself not to drive as she has moved onto a retirement complex in the middle of the town. We do also have power of attorney over her affairs and health. I've never heard of the West Haven score, so will mention it next time we speak to the consultant. Will also ask about Lactulose. Thank you. X

[Hidden]

Hi puggypig, I'm sorry to hear that your fluid is continuing to accumulate. It's sometimes a difficult balance between medication/draining fluid through paracentesis etc to keep you well and the fluid off. Do you have an appointment with your specialist team soon? It might be worth contacting them to mention the fluid gain and also the fact that your partner has noticed your occasional symptoms of HE. Take care,Trust10.

[Puggypip in reply to Hidden]

Thankyou everyone for sharing knowledge and experience. I saw the consultant around a month ago and he took me off the diuretic. I do take refexamin and lactose. My HE does change my moods,I apparently often become distant(The lights are on but nobody is home!) I find concentration difficult but my confusion seems much better. Much like other people,nothing seems to be mentioned about this at any appointment's that I've had and I really feel for my partner having to put up with it...he has had no support from anyone and is trying to get through this with me. I hadn't heard of the West Haven score so will do some reading,thanks again x

[PoppyPiper]

Hi Puggypip

I also had extremely bad odema in legs from ankles to hips prior to my transplant and also ascites in my stomach. I was OK with the diuretics but still had to get fluid drained which I had done once and it really did help both my ascites and reduced some of the fluid in my legs. I kept to a strict low salt diet and when not on my feet (very rarely as I had problems with walking and getting up/down stairs I kept my feet well risen to help drain the fluid from the ankles and knees.

The skin on my legs was really tight and full of scabs, by accident I found that petrolium jelly (vaseline) helped in my case (check if you have skin allergies before using) as well as cocoa butter body lotion - in UK Tesco do a great own brand for £1.

regards PP

[Readlots]

Hi Puggypip, Id echo what PoppyPiper has said. My mum has been taken off diuretics and has Ascites and Odema in her legs and feet. We got a referral to on Odema Nurse . She advised 4 elements of care: daily washing and moisturising of her legs;gentle excercise, Legs raised when resting (ideally above waist level, and wraps for Mums feet and legs. Mum is also on a low salt restricted fluid diet as advised by a nutritionist. I’d recommend getting referrals for not a nutritionist and Odema clinic.