Following on from my earlier DVLA post.

[NoMorePlease]

Hi all, Yesterday I received the disclosure forms from the DVLA regarding reporting Insulin use etc and excessive tiredness etc.

As mentioned in my first post the topic of Cirrhosis came up, I was told that it is a reportable condition, now I may have misunderstood the advisor as to whether it was the actual *Cirrhosis* diagnosis or rather, the co-morbids that go along with it.

So yesterday I phoned the Specialist Liver Nurses and asked if I had ever been diagnosed with HE as I am on Lactulose. I explained exactly why I needed to know.

Nurse - "There is nothing in your discharge letter from the hospital in May 2020 saying you had had HE" (first and only admission for decompesated cirrhosis), although it does mention you were started on Lactulose during your stay.

My response - "so from this can I take it that I have never had HE then?"

Nurse - "no, as HE is one of the markers that goes with decompesated cirrhosis means you will have had it and that is why you are on Lactulose".

Me- But surely I should have been told I (may) have had it, and about the possibility of it recurring regardless of *comp or decomp* status?... So should I report to the DVLA something that I may never have had with the possibility of never driving again?"

Nurse -"only if they ask if you have had Decompesated Cirrhosis."

I have to respond to the DVLA within 14 days, given the letter was dated the 1st of June I may as well hand my driving licence in, I'm also waiting on an appointment with Neurology too, doc said long waiting times, the DVLA expects you to hand over your licence if you can't drive for 3 months or more!

It's so hard not to feel like cr@p at times, I know I should be bloody grateful just to still be on the go, BUT there's just too much to process at times.

I usually pretend that everything is fine, I try to be jovial, outwardly mocking myself, laughing at the endless health problems I have.

But, even once in a while, I give in to the feelings of guilt, hate, sadness, regret, anger and disbelief at the person I have become.

Sorry for moaning, I know I can say this here without being judged, thank you for being such good, caring people.

Take care of ALL of you x

[Readlots]

Hi, driving has been my independence since the age of 17 as I grew up in a rural village. I know that if I reach the decompensated stage with HE I’m going to be devastated to give up my license. However I also know I’d feel much worse if I had my license taken away by the police because I’d caused a fatal accident, or even if my kids had to tell me that it was time to stop driving because I wasn’t safe. Far better to be in control of the situation and give it up voluntarily at the time of my choosing with alternatives in place. I know this isn’t what you want to hear, and I really feel for you. I’m sure there will be others on here who have been through what you’re going through and can give words of wisdom and some hope for a compensated or transplanted future.

[AnxiousPete in reply to Readlots]

I have visited the UK government website for reportable conditions for driving and nowhere can I find cirrhosis or encephalopathy (HE) ?

[AyrshireK in reply to AnxiousPete]

For some reason HE is lumped into the Alcohol Related Disorders page of the .gov assessing fitness to drive. Page obviously needs updated to put Hepatic Encephalopathy as a condition that isn't always alcohol related.

gov.uk/guidance/drug-or-alc...

Alcohol-related disorders

Group 1 car and motorcycle Group 2 bus and lorry

Examples

■ hepatic cirrhosis with chronic encephalopathy

■ alcohol induced psychosis

■ cognitive impairment ✘- Must not drive and must notify DVLA.

Licence will be refused or revoked until:

■ recovery is satisfactory

■ any other relevant medical standards for fitness to drive are satisfied (for example, Chapter 4, psychiatric disorders) ✘- Must not drive and must notify DVLA.

Licence will be refused or revoked until recovery is satisfactory.

My hubby has never been told not to drive but maybe that's because he decided for himself that he'd be a danger behind the wheel & has notified doctors that he isn't driving :- fatigue, concentration difficulties, can't navigate by himself, slow in movement and function and more.

Katie

[AnxiousPete in reply to AyrshireK]

Thanks Katie

[AnxiousPete]

I have visited the UK government website for reportable conditions for driving and nowhere can I find cirrhosis or encephalopathy (HE) ? Insulin dependence alone does not mean you have to surrender your licence. There are leaflets available online advising on driving safely with various condditions including diabetes.

Report

[Ubwa]

I think it’s part of the playbook to put everybody on it, if even as a prophylaxis. I was put on it too at discharge, refused it in hospital after first few days ( going to the toilet every 5 minutes sucks) and never took it once home either.

Never had HE

[Ewife]

My understanding of bei g put on Lactoluse as soon as diagnosed is to PREVENT HE. Keeping the waste flowing freely out of the body, as lactoluse does, prevents the build up of toxins going to the brain. Simple. It's Rifaxomin that is only prescribed for HE, but even that could be used as a prevention if it was cheap enough. Its a really grey area.

[Hidden]

My understanding is Lactulose helps rid the body of toxins while also helping with constipation, even if you don't have HE, but have constipation and cirrhosis they put you on it as a safeguard.

Since my transplant it has been less effective in dealing with constipation so they have moved me onto Senna, which doesn't have the double effect.

You might want to check your Billrubin levels as these are indicative of HE, mine since TP are in the 5-7 region, they were 165 at one point and many have had much higher than that like 400. (am not a medical professional and not giving medical advice, I can only speak to my own experience )

I had the same experience as UBWA, pre-tp, when in hospital no one was willing to take Lactulose, even when they came around on the medical rounds, they would try and foist it on us, but all of us were wise, until one day I learned that it helps eliminate toxins as well as functioning as a laxative, so I tried it, with ugh...everyone thought it was very funny, but it eventiually settled down and became regular again. Since leaving hospital post tp they have moved me off lactulose and onto 7.5mg Senna, 2, twice per day

As far as dealing with the endless day to day hassles, I find if I can just focus on clearing one thing at a time, then that helps me gradually get through the list of things to do, I completely understand and often feel overwhelmed and stressed when there is just this endless list of things to do...even if you phone and make the effort just to do one thing on the list, even if you achieve nothing that time, it helps to gradually do things, takes the burden off a little.

[Oldbits]

Hi, the other place to check is with your car insurance company. We use SAGA and they list the medical conditions that they cover and those you should report to the DVLA. Also very helpful on the phone. Hubbie had his licence taken but that was HE and alcohol use. I had to hide keys as he thought he was fine to drive. We are also rural and no bus, nearest shop 4 miles walk. Now compensated and it took over six months after DVLA medical for paper work to done! He rang them every week to chase them up and could never get through to their medical department. They weren't a lot of help. Hope you get some sort of answer soon, it's frustrating when you get mixed information. My dad was a type one diabetic and insulin dependent from his teens, never had a problem with driving/dvla

[wurzle]

I was diagnosed with HE when I was very ill in hospital in 2020. I do sometimes have similar symptoms such as fatigue, brain fog etc. Whenever I ask my gp or consultant they discount this after a couple of cursory tests( tests for 'liver-flap' but my hands tremble anyway and drawing a 5 pointed star without lifting a pen - which I could never do anyway due to my dyspraxia). But I thought that, as I was not currently diagnosed with HE and a couple of years had past since I had been diagnosed and recovered from it, I was ok to drive. So can someone tell me what DVLA rules are regarding this? x

[AyrshireK in reply to wurzle]

Absence of asterixis doesn't rule out HE, there are varying degrees of it and it can be covert or overt. Covert HE can still very much impact on driving capabilities - fatigue and brain fog are very much symptoms you'd associate with HE. My hubby has what has been deemed minor HE, he doesn't have hand flap but does have cognitive difficulties, is slow doing anything, has fatigue, sleep disturbance, brain fog.

Are you on Rifaximin/lactulose at present.

Encephalopathy is on the .gov page re. assessing fitness to drive but it's been lumped into the alcohol related disorders page rather than liver disease in general.

Katie

[wurzle]

Thank you Katie. I know I can always rely on you to put me right 😉x. I am on lactulose and also have to take bisacodyl so I ought to look in to it. I would be very reluctant to give up driving and the independence and flexibility it gives me. I live in quite a rural area and public transport is awful and I don't want to rely soley on my sister to take me to appointments and such as she has done so much for me already. But if I must, I must I suppose. Holly xx

[wurzle in reply to wurzle]

Edit: found the answer on an earlier post. Bilirubin. Thx

on a side note do you know what blood result they use to indicate possible HE?

[AyrshireK in reply to wurzle]

I have never heard of bilirubin being indicative of HE (until that post earlier & I am not sure it's 100% accurate) - bilirubin causes jaundice, possible itching (pruritis) and can affect toiletting colour - dark urine, pale poo.

It's usually a heightened level of ammonia which might indicate toxins are building up and thereby potentially leading to Hepatic Encephalopathy.

More information about HE on the British Liver Trust website. britishlivertrust.org.uk/in...

Katie

[wurzle in reply to AyrshireK]

ok thank you x

[Chick_atee]

I am taking lactulose. I was told because the liver cannot get rid of all the toxins like ammonia to prevent HE.,I take it as I feel I need it. Usually every day or every second day.