I have been reading on this site for about 3/4 weeks now and have learned a great deal in the meantime. My husband was diagnosed with Cirrhosis of the liver in Mid January this year, following about 2 years of ‘not feeling quite well’. He had previously been diagnosed with Constructive pericarditis in 2016 and the water retention, some muscle loss, lethargy, feeling cold, bruising easily, were all attributed to his rare heart condition. We were both hoping they would operate to give him a new lease of life, but when he was sent for investigation in his liver...to see if it could cope with such major surgery, it became clear that an operation was out of the question. In fact, everything made complete sense at last, the consultant gave very detailed explanation.....the CT scan showed cirrhosis with portal hypertension. He does not need Lactulose as he eats loads of fruit, so no bowel problems, but was given Rifaximin to kill off any toxic which can cause confusion in the brain.
We had not expected good news, but the massive curve ball we did not see coming was he that he would have to give up his driving licence immediately! The shocked silence that followed was punctuated by me saying ‘Yes He doesn’t feel well at time and I drive, so we share journeys when needed, but we felt that this would be ours to manage’
We left in a complete daze and over the next few days descended into lockdown, the darkest hour, ground zero.....a place where so many people on this site have been to...the family gathered, OMG he must be at deaths door and much worse that we imagined.
Just prior to this appointment, my husband had developed a hacking cough, Chest infection, been on antibiotics, hadn’t slept for about 3 weeks, the water retention had returned with a vengeance and was feeling pretty damn lousy at the appointment. The hepatologist sent him for a chest X-ray and the results went back to his Dr. A subsequent CT scan has shown peneumonia type conditions, which he has since recovered from and energy and sleep patterns have improved following the dietitians advice about snacks between meals and porridge at bedtime.
His Dr was a bit shocked to learn about HE and the driving ban and was cautious but suggested speaking to the medical team at the DVLA, but not to get his hopes up to have them dashed again.
On spending many hours on this site, I can confirm that my husband has never been hospitalised with ascites, HE, bleeds, vomiting, jaundice, repairs etc.etc., whilst this may be his future, it is not his present, although the water retention continues to be his main problem. He enjoyed a drink, but stopped immediately a few months ago, when they were raising suspicions about his liver, along with sleeping tablets and salt.
Before he speaks to the DVLA, we would welcome any advice or experiences that other people have had on this matter. We are retired..he 71,me 69,and hope to retain some quality of life for a few more years yet.
Many thanks and good health to everyone.
JX
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Jackinthebox
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Somewhat suprisingly Hepatic Encephalopathy isn't listed on the DVLA list of notifiable medical conditions which can be found at :- gov.uk/health-conditions-an... - it almost certainly should be when it causes issues of concentration, fatigue, affects thought processes etc.
However, since you husband is now over 70 and in the bracket of 3 yearly licence renewals he has to have his doctors approval and statement that he is fit enough to continue driving. If he is receiving treatment for HE is would point to him having some difficulties with cognitive function and sadly he probably isn't fit enough / safe enough to drive.
No one has ever told my hubby (55) that he isn't allowed to drive but he stopped himself as he knows he is too tired, has concentration issues, can't follow instructions, has become slower in mental and physical tasks and knows himself that he would be a hazard on the road.
My hubby is treated with both lactulose and rifaximin - lactulose doesn't just act as a laxative to make you go to the loo it also has special properties which allow it to afix and remove toxins via the bowel motions.
Your husbands pre-existing heart condition probably IS a DVLA notifiable condition so perhaps doctor is just coming to the decision that at 71 with numerous medical complaints the time has come where it isn't safe for him to drive any longer sadly.
I have read many of your posts and did not realise that your husband is only 55 years of age. Life has been kind to us to date, so my post may seem very petty, but it is the thing that has knocked the wind out of his sails. He has always cooked for us and that involves buying local produce from the butcher baker and local co-op, making all the decisions about our meals. He knows more about the contents of the pantry and the freezer than I do. He owned and ran his own business locally for almost 40years and knows a lot of people, so A trip to the shops, about half a mile away, could take an hour or more, because he always got into conversation with so many people and usually came back smiling with a story to tell. Now he has to rely on wifey to run him around so feels that he has lost his ‘thing’.
He has already dusted off his bike, but until the weather picks up that is out of the question, but surely true HE should prevent that activity, as well as a mobility scooter, which he is pondering about.
We have a caravan in winter storage, last trip October 2017, so some life changing decisions have to be made. He has a trip to the cardiologist later this month, so we could find out more about this heart.
Hi JX, encourage your hubby to keep doing everything he can. My hubby can't stand in the kitchen and cook, he just loses the thread of what he's doing - he certainly can't multi-task. I had a night away from home last week and he had to get up make himself a coffee, sort out the cats breakfast, his own breakfast and medications and he was by his own admittance 'lost'.
It's a shocker when the diagnosis comes out of the blue. My hubby / fiance as he was then was ticking along quite nicely - he was a fit and very active long distance walker, he was working hard as a welder in heavy engineering and doing all sorts of other activities. We only met and moved in together (i'm only 44) in March 2010 - he'd been caring for his dad with dementia for a few years and had been signed off work with anxiety & depression with various symptoms which no one associated with any underlying physical condition. April 2012 and totally out of the blue he started vomitting and passing blood and wham, diagnosis of end stage liver disease / cirrhosis with portal hypertension & burst varices. They say due to auto-immune hepatitis which has burned out.
Literally overnight his life changed, his energy levels were zapped, concentration difficulties, sleep deprivation, unable to work, unable to plan ahead etc. He was listed for transplant in June 2014 but delisted in May 2015 as his blood test results and lack of the major life threatening symptoms of cirrhosis meant he no longer qualified for t/p - he continues to be well monitored in case of deterioration.
We too have a caravan and thankfully I am able to drive and tow so we do still get away places and always make the most of good days. Hubby has his low days but we've learned to write those off and live for the better days. We live rural so hubby doesn't go out on his own other than for short strolls round the country lanes - he couldn't manage to navigate public transport. What has hit him the most is the lack of energy and the inability to do the long walks he used to do in his 'former life'. We are talking major long distance walking, 100 mile challenge walks, 400 mile (fortnight long - 'holiday' walks - Coast to Coast, Pennine Way, his own massive routes), regular 40 + mile days, work through the week then every single weekend walking somewhere in challenge events. He sees hills now and he gets depressed because they are out of reach & for someone who 'haunted' the North York Moors, the North Pennines, the Lakeland Fells and more it really upsets him especially as he'd just moved to SW Scotland to join me and the Galloway Hills and Southern Uplands are within what in the past would have been walking distance.
HE comes in two forms really - the 'milder' form which is like my hubby, concentration difficulties, memory issues, slowness, sleep disturbance, communication issues and then the more serious form which brings in personality issues, difficulty writing, hand flapping, severe sleep issues, risk of coma and character changes - irrational behaviours and actions - we've had members who have been arrested whilst in the grip of HE because authorities haven't identified that HE was the issue.
I do wish you the very best going forward with this condition.
Sorry to interrupt in the conversation, but having read your journey with hubby i commend you on your strength as a loving wife and having such a wealth of knowledge.
I always look forward to reading any of your posts as you always know what to say.i hope your hubby gets back to his old self in the future, he is one hell of a lucky man to have you by his side x
What a terrible time you have both been through and at such a young age. The travesty is that your hubby has been such a fit man. How often do we hear that the route to good health is to stay fit, so although you sound as though you are managing brilliantly, you must have both been angry and bitter at times that your hubby has been struck down in such a way. The other thing I cannot get my head around is that he has been refused a transplant. Surely someone who has been so fit would go to the top of the queue because other organs in the body would be in good order???? I am learning that the liver is such a complex organ. I am also amazed that so many people are having transplants because before this I had only heard about George Best having one. heart transplants are always being talked about but not liver?
Pleased to hear that you tow the caravan and get away. My own daughters tell me ‘you can do it Mum’. I did tow many years ago, but dropped back when we had newer caravans.....my husband was not going to trust me with his pride and joy!! I must admit the modern vans are lighter, more stable, anti snake system and self braking to keep itself straight....you are too young to remember some of the monstrous ones that were around!!!! Also he realised I was the better navigator!
Hi, I also have been diagnosed with HE after bringing certain difficulties to my consultants attention. I had a brain scan to confirm and it was here that the possibility of having my licence revoked was aired for the first time. Although the scan revealed Encalopathy I have retained my licence and been prescribed Rifaxamin. My symptoms were mostly to do with concentration when I felt overly tired, and we took action immediately and I allowed my saint of a wife to drive on these occasions. Since taking Rifaxamin I have had no issues with driving and avoid doing most things that would lead to me being over tired. Having said that we went out on Saturday returning home at midnight, and I had to return to bed at 7pm last night being unable to keep my eyes open. As you can see from the variety of posts that each case is different with some clearing up once they have been transplanted etc. Myself I had an attempted transplant 15 months ago which was abandoned due to a massive haemorrhage and I was given less than 24 hours to live. I am still here, same liver and if HE is the trade off, I will take it every day. I know how frustrated your husband must be, but he must also accept he is unwell and life isn’t always a “bowl of cherries”. He should try to focus on himself, keep taking the meds as instructed and you should both establish the exact reasons behind the withdrawal of his driving privileges. It may well be that it is a combination of factors rather than just the discovery of HE.
Thank you for your response. Your case sounds interesting, because like you my Husband will have a busy day and feel exhausted the next day and go to bed early or have a nap in the afternoon. Reading other posts I am not convinced he has HE and certainly nothing like has been described in a lot of cases. I listen to comments made by other male 70year olds and think ooo you could have your licence removed?? Please believe I am sensible women qualified to Management level in H&S(retired) and know there has been a high increase in the computer saying NO to be on the safe side. whole businesses have been put in crisis for the want of a piece of paper in a file....oh don’t get me started!!! As stated in my post ‘I thought it would be ours to manage’ and I am pleased to hear that you and your wife were allowed to manage your own driving situation.
I am sorry to hear that your transplant did not go according to plan, but very pleased for you that you are here to tell your story.
I have written a blog about my cancer journey. I shoot from the hip and just type exactly how I feel at that given moment. My journey has been a roller coaster not just for me but for everybody associated with me, Wife, Kids, Grandkids, Parents, Siblings and the mountain of friends I have. My desire not to embark on this journey alone as if it was some sort of “dirty secret” means I will never be seen as a victim, however this journey ends. It can be found at 1liver1life.wordpress.com
It is sometimes funny, sometimes sad, sometimes uplifting and also devastating.
Both you and your dear husband may get something from reading it, and I am sure you will identify with certain elements.
Good luck on your journey and if there is anything I can assist you with, please just ask, I am on here all the time.
Hi to all of you who have had HE and post transplant are back to normal.Unfortunately my hubbys reason for needing one was due to alpha 1 antitrypsin deficiency.this meant that from birth his liver had never properly functioned.when he was diagnosed with HE the consultant said his symptoms werent typical of HE alone.it turned out that over nearly 60 years he had a build up of metals in his basal ganglia. (Brain) so even post transplant unfortunately he still has symptoms but we have learnt we have to live with it.He is at least still here and able to do all the things he couldnt pre transplant.
The DVLA are very tricky to deal, on the phone they give out an awful lot of misinformation. When you have to communicate with them put it in writing.
You do not say if your husband's licence was revoked or you actually gave it up to the DVLA. The best thing to do is have a discussion with GP, ask them to carefully read the guidelines. If you have had encephalitis you have to tell the DVLA. Hepatic cirrhosis with chronic encephalopathy comes under Alcohol related disorders in the fitness to drive section on DVLA.
If you haven't handed the licence back, don't, as getting it back can be a long and onerous task. Just discuss with the GP, if he feels it necessary to notify DVLA he will.
Many GPs and Consultants do not read all the guidelines as they are far too busy, my consultant and GP wrote to the DVLA on my behalf, but they still revoked my licence. So I just gave up the battle and accepted it, hopefully it shd be returned to me May or June.
Keep well and spring is around the corner, my bike has been in hibernation x Mel
Thank you for your response. Some good points. In our confusion, we thought the consultant would notify DVLA and expected a letter. He would then have to appeal if needed. However, we are now learning that it is my husbands responsibility to declare. We are thinking that it was his other chest related illness that gave the clinical picture at the time rather than the liver? He has read some of the posts of others with HE and keeps saying I am nothing like that and he is right. He also now studies other drivers closely whilst I drive him around and says ‘what and I’ve got to give up my licence!!’
We are monitoring this situation closely and have to go back to this consultant in April and will discuss then.
Bring on the driverless cars I say!!!
Take care
JX
Hi Jackinthebox,
Good luck with this situation.
We are in the U.S. and things may be different here. There is no requirement that liver disease automatically means giving up one's driver's license that I know of. Is it a requirement or a suggestion?
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