I was diagnosed with decompensated liver cirrhosis a few months ago. I came out of hospital about a month ago, from Ascites, jaundice and pneumonia.
I am extremely upset by this and very scared. I have completely stopped drinking since my time in hospital.
I could barely walk after leaving hospital, the muscle wastage combined with bed stay. I want to up my fitness levels as can move around more now but don’t (but nervy as think unsteady, but partly that’s in my head). My GP told me not to take things suddenly (e.g. even gentle swimming might be too much, but I would like to try and do something if it helps. (My main concern is the diagnosis and prognosis for what they gave for life expectancy which haven’t yet learned to cope with in my head, but trying to find a distraction!)
So many questions I have - and like many I’m sure, wish had someone on standby to answer them instead of waiting for next appointment.
Thank you and apologies for long post. All the very best to everyone,
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SirRobert
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Hi SirRobert I was in exactly the same situation when i came out of hospital , I was very unsteady and this does rectify with time . For fitness I used an exercise bike ,you can do as much as suits you at first then slowly increase your time of use or increase your mileage , it really does help and you will feel better for it . It helped me mentally as well coping with my Diagnosis .
Hello SirRobert and welcome to the forum, hopefully you'll find loads of friendly support here from folks who have been on a similar journey.
First off all is not lost, yes you have a cirrhosis diagnosis but you've already done the best thing possible in kicking the booze into touch. Keep going with that as hopefully you can halt further stress on the liver and you never know it can recover to some degree.
Did you get dietary advice from the hospital? Before you start exercising you need the correct fuel going into you so for now that's going to be plenty of carbohydrates and protein - you can't rebuild muscle without protein and you'll have no energy without carbs. (Going to ping you a private message with a bit of information on this).
As regards exercise - slow and steady. When my hubby was first released from hospital he just did some short walks - gradually building up. If you need a stick to steady yourself or give you that little bit of extra confidence and security use one. As you're legs get stronger hopefully you can go further and more confidently.
My hubby is currently awaiting transplant and the hospital physio gave him a few very simple exercises - doing short sets of repetitions standing up and sitting down from a chair with out using your arms will build some abdominal strength and leg strength. Simple bicep curls - use some food cans or equally sized/weighted bottles if you haven't got dumbells. Walking and gentle swimming are also suggested but not to exhaustion.
No one can tell you your life expectancy - not even the most qualified of liver doctors as there are so many variables. They can do all sorts of calculations to give scores like the UKELD (United Kingdom score for End Stage Liver Disease) or MELD (Model for End Stage Liver Disease) but these are only a 'guide' and are more for if nothing is done to stop the progression. Whilst online you might read 'x number' of years you can positively affect that by healthy life style changes and doing all you can to look after your liver and health in general. So, don't get hung up on what 'prognosis' figure you have been given you can well exceed any figure give provided you continue to look after yourself and should you find yourself getting more poorly further down the line then transplant may be a possible treatment option ........... even when alcohol has been the cause of the issue. There are plenty of members on here who have had to have transplants but they worked their butts off to get and remain sober and as healthy as they possibly could. Transplant criteria is strict when it comes to alcohol related liver disease but providing patients can prove their sobriety and commitment to it then transplant is an option.
As regards help on hand 24/7 - this forum is excellent, there are people here at all stages of their liver journey from those who are newly diagnosed through to those who have had successful transplants and living fulfilling second lives. There are folks with alcohol and drug histories and folks who have liver disease from many different non-lifestyle related issues plus there are the carers and loved ones of folks with liver disease (such as myself who is supporting hubby with his condition - 12 years diagnosed with auto immune cirrhosis and now awaiting transplant). We've seen and heard it all and can often offer guidance from a lived perspective so no question is a silly one and hopefully you'll always get an answer.
If you want a medical perspective chat then the British Liver Trust Helpline might be a good source of help - it's staffed by qualified liver nurses and you'll get the details at:- britishlivertrust.org.uk/in...
I was in a similar situation after I was hospitalised with sepsis and also grafter transplant. I managed to get the hospital physios to get me a walking stick to help and that was really helpful. However, you could also just get one of the normal walking poles you see folks with. It doesn't need to be anything expensive or as bulky as a hospital stick. You can even get them at your local branch of sports direct. If you're lucky Aldi or Lidl nay even have them in their muddle isle at some point. But sports direct may be a bit more of a reliable option, lol. Or, for that matter, any other outdoor retailer.
Walking is probably the best thing you can do. Its low impact, can be maintained easier than most other exercise and is pribably a bit less boring than a stationary exercise bike. Start easy and short and just gradually increase how far or how long you walk over time as you start to get a bit more used to it. After transplant it was like, walk round the garden or just up and down the street to start, so don't worry how long or short your walk is to start with.
I was in exactly the same place just over 3 years ago. I’d been drinking heavily for many years and then got a deep rooted infection which finally tipped my liver over the edge. I was hospitalised with acute on chronic liver failure and was lucky to get out of the place alive. I couldn’t walk and had no muscle mass when discharged. Since then, with a lot of hard work I can honestly say I’ve never felt better. I stopped drinking the day I was admitted to hospital and haven’t touched a drop in over 3 years now. It’s the singularly most important thing I could have done. I took all my meds…now I take none. I ate the prescribed diet which was heavy on the protein and carbs and low in salt and sugar. So a lot of chicken! I exercised steadily with really clear daily goals. Within two months of discharge I was riding a horse again which given I couldn’t get from my bed to the en-suite without a walking frame on discharge was something I really celebrated (with orangeade I hasten to add!) It made me feel so much better. It was a steady recovery over about a year. I certainly felt loads better by then. My bloods are now normal, the two minor varices I had when I was first diagnosed are gone and whilst the cirrhosis is not gone my Child Pugh Score is A5. Stable and well compensated. It is very possible to live a pretty normal life with cirrhosis. I do. I take each day as a blessing and don’t really think about life expectancy. I have been told by my consultant I can expect it to be normal…but who knows what that may be! I always thought that I’d get well again and I swear that it’s this positive thinking coupled with following all the medical advice to the letter that has led me to this point. I don’t miss the booze…I’m lucky. In many ways I’m kicking myself for letting it take hold of my life like it did. We live and learn and I now treat life as the blessing it is…whereas before it was through an alcoholic haze.
Hello,After my husband suffered a massive bleed, we engaged an online physiotherapist for a few weeks just to get him gently going again. It felt a nice safe option and definately worked.
Hello Sir Robert and I echo all that has been said you are in very good hands on this super supportive forum with so many real life experiences plus the medical side as and when. Wishing you so much luck with your journey and you really have done the hardest part by kicking the booze - congratulations - whilst my hubby was in hospital for 10 weeks and really not eating very much - one of the specialists at the hospital asked him if he liked motorsport and which of the FI drivers etc he had followed over the years when he answered Senna the consultant asked so how fast do you think Senna would have been able to drive without petrol in his car ? this was as a way of trying to encourage my hubby to take in food and over time he would see improvements ! He also reminded him that it had taken years to get to this place so there was no quick fix but over time however small the improvements are possible and you will see many fabulously positive and encouraging stories from folk who have been exactly where you are. Know you can do this and hugs to you.
That must have been really scary for you but congratulations on giving up alcohol as I know that is really tough. There has been a lot of excellent advice here as always. I volunteer with an exercise class for people with limited mobility, not necessarily liver disease, a lot of which is done seated to build up the muscles required for standing etc. The main thing people say keeps them motivated is the music. You immediately see people brighten up once the music comes on. That and the social aspect of meeting up over tea and biscuits and sharing an activity. It might not be for you to join a class it isn't for my husband, but you might find music while doing simple day time tasks and exercising gives you an uplift and motivation. It is also good for the brain. I hope that helps and well done for starting your road to better health.
I am just going to agree with the other replies about getting carbs and protein for energy and strength, and also walking being good exercise to start with. The bum, thigh and calf muscles are very good at moving fluid around the body and help the kidneys remove the excess (not a medical opinion, but observation over many years with my partner). Another good start is gentle calf raises - standing up straight, feet slightly apart, hold on to the back of a chair and raise yourself onto your tiptoes and then back down as slowly as you can. Obviously stop if there is any pain or discomfort. Start with just two or three and build up. The rule I've been told is to do 75% of what you feel comfortable with and stop, don't soldier on and then feel worn out. The advice about a walking stick is also spot on, and we also got extra handrails in the house and garden. Our experience was that there is nothing worse than having a fall, it was frightening and affected self confidence for both of us. Take every precaution you can, so that you can enjoy getting out and about. Very Best Wishes Andy, Bristol, UK
Sir Robert, I am not an expert - I am hesitating to find out where my liver is at (Fatty or worse probably) but I know how vitally important your psychological state it is. It will have measurable effects on your recovery.
I hate such terms as end-stage - nobody knows! That's just statistics and you are not a statistic. Imagine, knowing what we know about mind / body and placebos, tat a doctor might use such terms. (Maybe it could be an incentive for some? I don't know.)
I loved Aotea2012's reply. And also Kristian about using a sturdy sports cane while you need one. All these sorts of things are known to make a real difference to how you feel.
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Fibroscan Result
Finally.
Intensely scared that I have alcoholic cirrhosis
Hubby recently diagnosed but virtually at the end stage
