Have cirrhosis and things have improved so much. Not officially recompensated yet but on track to head that way.
Still get fatigue and other symptoms which I’m used to now but if I don’t eat on the rare occasion I’m delayed or life happens I break into a cold sweat, light headed and weak and feel I have to get food immediately. Then it passes a little while after I get the nutrition in and I’m powered up again.
I’m aware how important it is to carry snacks and things with me but I’ve just been caught short a few times.
Just wondering does this happen to anyone else and as the disease improves will this go away? It’s not a nice feeling
Thanks.
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Chick_atee
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I’ve read a couple of your previous posts and you sound like you’re doing really well and on the road to recovery. It takes time for your liver to recover and when it’s damaged it’s a bit like a faulty boiler. It’s pretty inefficient on fuel. This means you have to eat the diet your dietician/doctor recommends - which with cirrhosis is normally high protein, with differing calorie intakes depending on the state of your liver. The more poorly - the higher the calories. The damaged liver is also not able to store glycogen (energy source) overnight - this means you need to fuel up before you go to bed. In the early stages after my diagnosis I was on a high protein, high calorie diet to build up my muscle mass. My liver has improved a lot and now I have to watch my weight - so my calories are down to about 2000 a day. I eat about 70g of protein a day. I haven’t touched alcohol in nearly 3 years - hence a much happier liver 😀. I found that as my liver health improved my hunger stabilised. I used to get the symptoms you described if I hadn’t eaten properly - that’s now gone away completely. It gets easier over time.
That’s fantastic. Great to hear you’re now doing so well. Yes, I’m so delighted and happy to be doing so well also. So fortunate. I did work with the dietitian and achieved the weight I needed to but I just want to maintain that weight now and not run into complications becoming overweight with all the calories I had to consume. Good to know I can start to pair back a little and good reminder from you and others to eat at the right times like the nightly routine.
My partner had this too when he was decompensated. It would come on suddenly and he would experience all the symptoms you mention. It would resolve with food. He is recompensated and doesn’t get it really. He knows when he needs food but it’s not like before
I'm the same Chick...... its hard to know when you'll be caught ou but im usually ready with a can of sugary drink like fizzy orange and its enough to last until I get home....
We used to call these moments - hubbies 'power outages' ........... it would be a complete physical and mental shut down and i'd have to practically force him to eat a biscuit or similar and within 10 minutes he'd be ok again. It's all due to your liver's inability to store and release energy and is one of the reasons why you need to continually snack .......... running on empty isn't good for you when you have cirrhosis.
Carbohydrate
When you eat starchy carbohydrate it is broken down into sugar (glucose). This is your body’s main energy source. Some of this energy is stored in your muscles and liver as a starch called glycogen. This is a back-up energy store to be used later when it is needed, between meals, if you have missed a meal or during a long fast such as overnight.
The liver co-ordinates the release of this energy until you next have something to eat; these energy stores are then replaced at your next meal. If the liver is not working properly and you develop liver disease symptoms, the liver cannot replace this store.
The energy from the food you eat only lasts for 2 hours. If you have liver disease and have no energy stores, your body must find an alternative source of energy after this time. Fat tissue is hard to break down quickly, so instead your body will break down its own muscles for energy. If this continues, your muscles will get weaker and waste away.
It is important that you try and eat regular meals and snacks containing carbohydrate every 2-3 hours.
To prevent muscle being used for energy and to keep you strong, it is important to ‘re-fuel’ your body regularly. Eating meals and snacks containing starchy carbohydrate every 2-3 hours provides enough energy to stop your body breaking down its own muscles
Make sure you keep carrying and having those snacks.
Thanks Katie. A power outage is a good way of describing it 😅
I’ve come out of the muscle wasting stage. Seems to have built back up which is super. Think I got lulled into a false sense of security that if I missed a snack now that I’m doing so well I would be okay but obviously not.
I usually do all those things as you said in your info and that’s what getting me well but I just thought I’d be okay. So am I correct in thinking once the cirrhosis is there and one looks well and healthy outwardly you still have to eat the same amount? I have a small bit of fear about gaining too much weight now that I am so much better which could lead to more complications. When diagnosed last year I was 13 stone 8lbs ( a lot of this was anscities ) and went down to 8 stone 9lbs. Im tall at 5ft 10” and am now a very healthy 65kg ( around 10.3 stone ) which was recommended by the dietitian.
How does your husband maintain his weight with amount of food some of us have to eat? A lot of excercise I presume?
My hubby was skeletal when first diagnosed, he was an active long distance walker so had never carried any excess weight. He was deemed malnourished and had lost loads of muscle mass so when he was being considered for transplant listing he had to go on the high carb, high protein plan and successfully gained weight getting him to 11 stone at peak. That was in about 2015. He's never really been a 'snacker' so found that aspect really difficult. Since being delisted and especially in recent years he's actually started dropping weight again as he (and I) have taken up cycling. He probably still doesn't eat enough to keep the weight on in light of the amount of exercise he's doing. Sadly, in the past fortnight he's also been diagnosed with diabetes (due to the cirrhosis as it's certainly not in anyway lifestyle related). We have requested an appointment with the liver specialist dietician to try to get proper advice on how to manage diet for both conditions - his cirrhosis and the diabetes.
Thank you for that insight. I’m sorry to hear about the diabetes. I’ve been checked for it but I don’t have it. It’s something I might have to deal with like your husband down the line. It will be interesting to see how both can be managed for him. I hope that it will go as well as it can. Frustrating I would imagine given it’s not for the lack of living a healthy lifestyle. Well done to the both of you and thank you again for the information.
Ann
Hello.
My liver is decompensated and I’m active on the transplant list, I have suffered with this feeling quite a lot, once I felt really unwell with it whilst out for a walk with my family luckily. It also passes after having a snack or something to eat. I also get very thirsty and have to take a drink with me when I go out. Take care x
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