Driving again

[vulnerable]

I had an episode of hepatic encephalopathy in February. I was told not to drive. Has anyone had this experience? Has anyone been allowed to drive again after a period of time? Miss my independence

[freddie76]

Yes pre transplant my hubby had to stop too.

But after was allowed again.

So check with your doc how long u need 2 b in the clear b4 u drive again

Good luck

[chugalong]

I had an incident pre transplant which was when I was diagnosed with he. I did lose my licence then and still don't feel confident enough post transplant to do much about doing anything about. Thank goodness no one was hurt and I had no idea anything like HE or about it was possible and how many episodes can occur. It's just not worth the danger.Yea I do miss driving especially with nice weather as used do a lot of caravanning and as was a vehicle mechanic bye bye my trade and business but hey due to so many thoughtful, kind and experienced folk and most of all donor and their familly I am still here. Mind you is there any pleasure driving on the roads these days amongst other things.

[Kiddie]

Hi

I also had HE and had my license taken away. I was a driving instructor to so not only did I lose my independence but also my job.

You really do have my sympathy, it's awful and scary. I also feel that people don't really understand the complications of HE and liver disease.

I was very lucky though, I lost my license in late November, had transplant in February and was back at work in June.

I wish you all the best,

Lisa.

[dckimberly]

Hi there. Sorry. I understand, but it's far too dangerous. I am not even allowed to be in a car because of it. Even to the doctors.

I could jump out of the ar or try and take the steering wheel from my partner.

My episodes vary from sleeping all day to acting like I have dementia and complete memory loss.

Hopefully one day I'll be able to drive again.

Right now my life is just one day at a time.

Good luck!

Kimberly

[chugalong in reply to dckimberly]

Yea I know exactly what you are talking about there. I am more than a year post transplant now and volunteer with a place dealing with dementia and have two thoughts on the one day a week I volunteer there. Firstly I feel how they feel as I feel I was there and secondly I am so fortunate due to all the kindness and help given to me as I mentioned I have mostly come out of that circumstance, if that is the correct way to say it, No one really can explain it but we are lucky to have the help and friendship we get through this forum, family, friends the medical fraternity and most of all donors and their family.

[dckimberly in reply to chugalong]

nods. i am also post tx, but back on the list again. i had a shunt put in. But I do a lot of charity work from home. it helps!

x

kimberly

[chugalong in reply to dckimberly]

So hope all goes so extra well for you,

[dckimberly in reply to chugalong]

thx sweetie!

X

[peteingloster]

Yes I had the same pre transplant and was prescribed Rifaxamin I was right as rain after a few days , you've just got to decide for yourself if you feel confident enough to drive, these tablets are brilliant but expensive, so you need to push to get them, good luck

[h0b0]

If you've been told not to drive then I should imagine the doctor has informed the DVLA so you should check this out. My partner went through the same thing & only got his licence back post transplant.xx

[Latchford]

I had the same. They've said to me that I can't drive until I've had a liver transplant but I'm not definitely on the list so it begs the question what happens if I don't get on the list?

[AyrshireK]

For some strange reason Hepatic Encephalopathy isn't on the DVLA list of notifiable conditions when so many others are - the full list and details are at:- gov.uk/health-conditions-an.... [It might just be that the medical profession as a whole is only just learning about the full implications of HE and DVLA are behind the times with it].

However, depending on how your condition manifest then you may have symptoms as part of HE that are notifiable. If your doctor tells you you have to stop then you must notify DVLA and let them decide (It might be that you can continue driving depending on how your HE affects you ........... as many diabetic drivers and others with notifiable conditions are allowed to......................if you know you're unsafe thought then you shouldn't be driving).

Your doctor will not notify DVLA UNLESS having told you to give up driving and they know you still are a potential danger to others. If you doctor does report you to DVLA he/she has to notify you that they have done so.

In our case my hubby decided himself that due to his poor levels of concentration, slow reaction time, chronic fatigue etc. he knew himself he was unsafe to drive. We've never notified DVLA he just doesn't drive any more and isn't insured for any vehicle.

Katie

[LAJ123]

Hello vulnerable,

Sorry you find yourself in this situation.

Often the last person to know an episode of HE is happening, is the one with HE.

I spent most of the time telling everybody I was fine and that there was nothing wrong with me, despite, on one occasion, not being able to count backwards beyond two or three numbers and insisting that the Queen was called Margaret.

So the bottom line is; You cannot be trusted to say 'I have HE but I'm ok to drive today'

From the DVLA website;

'You could be fined up to £1,000 if you don’t tell DVLA about a condition that might affect your ability to drive safely. You could also be prosecuted if you have an accident.'

'Notifiable conditions are anything that could affect your ability to drive safely. They can include:

epilepsy,

strokes,

other neurological and mental health conditions'

From this I think its clear that HE doesn't have to be named as a condition, it falls within 'neurological conditions'

My main driving problem was parking tickets. I'm now having to deal with the fact that on many occasions I parked exactly where I wanted and didn't really see the need to follow the 'rules'

I had a DVLA medical post transplant and now have my full license to drive again.

As Kate says, if in doubt get medical advice.

Take care,

Jim

[jules45]

Hi, sorry about your situation but I've had a similar situation. Has your drivine licencentre been revoked by delay as mine was and I was devastasted. Decided to forget about it and sold my car through sheer anger. Waited 5 years and due to my liver failure and complications had settled down decoded to reapply for it. Lots of questionnaire and one to my GP which he invited me to be present while filling it in. Months later in October last year they gave me licence black for one year so this month immediately due to go throug it alll again. There is light at the end of the tunnel. My driving confidence had gone but soon returned. Just my experience for you but remain positive if possiible. Best wishes. Jjulie

[jules45 in reply to jules45]

Apologies for mistakes but used my smartphone with uncontrollable prediictive text. I meant dvla Swansea not delay as it read. I'll use this tablet from now on. Julie x

[vulnerable in reply to jules45]

Thank Jules I hope I get to drive again I feel so awful being dependent on others x

[jules45 in reply to vulnerable]

There's always hope. I was in your situation, relying on others. I live at the top of a steep hill to town, but try phoning dvla medical section and speak with them if ihey have your licence. They are very approachable? If its just your gp telling you then your hands are tied. I had liver failure twice añd got my licence back.

Take care, best of luck

Julie x

[Esmerelda62]

Hi vulnerable I also had an episode of Encephalopathy two years ago and was told not to drive so I can empathise with losing your independence' --- my Consultant advised me not to drive again in case I have another fit or seizure and it has taken a long time to adjust but you need to talk to your own Consultant because opinions vary!

I have rediscovered walking and feel fitter so that's a plus good luck - stay as well as you can 🎈😊

[vulnerable in reply to Esmerelda62]

😉

[Bonair]

Hi, my husband suffered from encephalopathy, and I'd like to tell you that it was a one off, but unfortunately I think once you've had one episode, more will follow. At our first appointment in Leeds, the doctor told my husband that he could not drive, and if he was stopped by police, he would be put away. It's not worth the risk

[LAJ123]

For information.

found the following published by the American and European associations for the study of liver disease. Its up to date and can be relied upon (2014)

Jim

aasld.org/sites/default/fil...

[LAJ123]

PS - go to page 8 for information on driving.

[vulnerable in reply to LAJ123]

Thank you but I still cannot find the info in page 8

[LAJ123 in reply to vulnerable]

My mistake - sorry. Page 12.

" doctors cannot evade the responsibility of counseling patients with diagnosed HE on the possible dangerous consequences of their driving, and, often, the safest advice is to stop driving until the responsible driving authorities have formally cleared the patient for safe driving. In difficult cases, the doctor should consult with the authorities that have the expertise to test driving ability and the authority to revoke the license. "