hello, I just wanted to put on here that I saw my transplant consaltant last month, and he was stressing I needed to improve my diet by going back on the Amyes shakes an increasing my Renopro. I started a food diary to record what I’m eating etc. but since I’ve been doing this I have also started going to the gym, but it seems almost to the day since I’ve increased diet and gym I’ve been going really ill. It starts with an uncomfortable tummy ache in upper stomach the feel really sick, I actually threw up which I haven’t done in months! I feel that sick I’m scared to move a muscle in case I’m sick again. I take odanestron which curbs it a bit then every single joint in my body aches, and I feel so week, I almost phoned ambulance today cause I felt so unwell, but hate the thought of sitting in A and for hours on a stretcher, I just want my home comforts. I’ve pulled through it today it seems to be passing. But this is happening to me every week, I thought I’d feel even better with my increase in protein and shakes but I feel worse Off! I felt I was doing fine before, but I just feel like crap, anyone else gets this or feels this way?
having episodes every week: hello, I... - British Liver Trust
having episodes every week
Have you got access to a dietician? I found mine was an incredible help. She’s discharged me now as my health has improved enormously, but when I was first diagnosed with cirrhosis back in March 21 she was an essential source of advice. I was very sick and had had a protracted period in hospital with a deep rooted infection which had tipped my liver into acute on chronic liver failure. I had a lot of muscle wastage and no appetite. I’d lost a lot of weight. I was on protein shakes to start with, which were essential as my diet was poor. She slowly weaned me off these and made sure my protein intake from food was high. I love cooking and she gave me lots of advice on making my diet cirrhosis friendly with ideas on how I could get 70+ gms of protein a day into a sustainable weekly food plan. I’ve easily adapted to this and eat a lot of high protein low fat meals. Chicken, turkey, nuts and pulses are staples for me. So I’ve got used to spicy stews and curries. I’ve also got some great recipes for salads and high protein snacks to make sure I have variety. I’ve become a bit addicted to milk…it’s very useful in my diet and drink a lot of the stuff to supplement my food. I also add skimmed milk powder to the milk I use for hot chocolate or cereals in the morning - I don’t notice the taste it but it increases the protein content. In terms of exercise…you’ll be aching because you are not used to it. Try to build a programme for yourself on realistic levels of exercise and build up as you get stronger. I enlisted the help of a physiotherapist as I had really bad muscle pain when I was first diagnosed. My GP didn’t understand it but referred me to the practice physio who helped me pull together a sensible programme to build up my strength slowly. Within a few months I’d move from walking to running and was horse riding again. She made sure I did enough but not too much.
Yes I have a dietition who has put me on the supplements again and introduced Creon after meals too, was wondering if I was getting milk intolerance
Try to get a plan together with them about how you can get the best out of your diet to minimise your dependence on supplements. I went through a very helpful exercise with my dietician to get the most from my food first, then agreed how we would use supplements to do just that….’supplement’ my diet to compensate for a wonky liver!
Hi , what are the high protein snacks you use daily to keep levels high , many thanks , Will.
Some are simple like boiled eggs with lashings of freshly ground black pepper or a handful of nuts and raisins or sliced apple with peanut butter spread over them. Others a bit more complicated, like protein balls. These are chopped nuts, peanut butter, sultanas and rolled oats mixed together and rolled into balls. (I add melted high cocoa content chocolate to mine as a treat) leave them in the fridge for a couple of hours. They are lovely and keep for ages. Also omelette wraps. One egg omelette and then put some tomato salsa in the centre, roll up and slice in to wedges. Make a few omelettes, put them in the fridge and snack all day!
Thanks , all sound good to me except the boiled eggs , the smell makes me ill 🤢 LOL , hope your well , Will.
I’m great thanks…hope you are too!
Doing a gym workout is probably doing you more harm than good at this stage. Your liver won't have the capacity to fuel an intensive workout and you'll be depleting yourself of all the good stuff you are taking- when my hubby was rebuilding his muscle etc. dietician stated to us that "A supermarket shop was akin to running a marathon to a person with cirrhosis".
Moderate exercise and snacking frequently to fuel and avoid what cyclists refer to as 'bonking' (no not that kind 
lol). The bonk is when you've literally emptied the tank ... bad in a sports person, worse in a liver patient. Symptoms of the bonk are similar to what you are describing. Going to send you a PM later which you may find useful.
Katie
I am taking it easy at gym, mainly going swimming to break in the exercise I’m trying to get fitter ready for my assessment at hospital, so do you think I’m doing too much?
Just don't over do it, you need to be loading in the carbs if you are exercising.
If you are at the stage where you are about to be assessed it is quite likely you will have some form of energy deficiet, and that may well be what is making you feel sick or at least a contribution to it. Just driving in traffic was enough for me. So, as Katie says above, try not to push things too hard.
It is good that you are trying to improve your fitness levels. It's just about finding a way you can do that without making you feel sick. So the advice to have something carb rich before hand is very sensible. It'll give you a bit of an energy boost. I know it seems counter intuitive, but a bit of cake or some biscuits before you go and after you finish may be helpful. It'll give you that bit of extra sugar needed to stave off the worst of the effects. It may not be a complete fix, but hopefully it'll take the edge off it.
Hi Harriet Sorry your still.not well ,why didn't you call me ? I'm always on the end of the phone your Dr won't look for fitness levels, he's more concerned in getting your blood works better
As the others have stated , moderation in any exercise is best gentle swimming 🏊♀️ but if your not eating due to feeling sick then best to avoid the gym ,I know I get tired after doing just a walk and back to shopping center ,and I mean more fatigued than anything.
Please take care .. you have my number xx
My husband gets really faint/dizzy attacks if he pushes himself in the gym. We think they're to do with his blood sugars so he has a breakfast bar or something sugary and slow release before he goes in and doesn't push it. When I say push himself, it's very little really compared to what a healthy individual would do. Just a few reps with weights and a few mins on treadmill is all he can do for now.
hi
I had the good fortune to see Dr on a regular basis pre transplant. He was very good at exploring/testing for any strange symptoms (even apparently non liver ones) so I would be pretty confident he has you covered there. A few other consultants were either 100%liver focussed or more dismissive. I was on Exhalt trials pre transplant and they were very into light exercise reps (up and down out of an armless chair etc - light swimming, even just moving in water for the resistance and lots of light walking). Katie is spot on re food intake, lots and lots of light “meals/snacking”. Well balanced protein loaded fresh food. The shakes are great if you struggle to hit the correct high protein requirements - I had renpro and meretin shakes (4 of each a day) - they do a much smaller thicker one which may be easier or thinner if you are using the thicker? I watered the shakes really well down so they were skimmed milk consistency, also they were a great help hitting daily water intake targets. The creon should really help you digest and process the most out of what you are eating. It is worth taking them religiously.
The op is massive and a good level of fitness really helps, but don’t overdo it in an effort to over achieve too quickly (as I did)- slow and steady improvement. They said there is nothing wrong with rest days. Also the ups and downs nature of the illness make some weeks seem like Hugh steps forward and others like you have fallen off a cliff. Stay as strong mentally as you can and loads of luck.
Thank you that’s exactly how I feel, I feel I’ve took a run and jump off a cliff (thats if I had the energy to run off it in the first place. I’ve yet to see my liver dietition my community dietitians don’t know much about the liver, so they are hesitant with me. Just hope I get more answers on the 20th I have my scan also that day too see consaltant straight after to talk about results and what the plan will be I guess
Dear Harriet-sarah
If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
Hi. Are you eating any better? I know you said you used to have feeding tube.As valuable as the drinks/ shakes are they also contain a lot of things which means for some people ( including myself) they can be hard to digest. I also feel quite ill when I drink them especially protein ones. I really dont know how some people manage to drink several a day!
well I finished my NG in March then weened off shakes and Renopro as I was feeling alright, but when I saw my consaltant he was really stressing how important it needs to be to get back on them. And at first I just thought it was my body adjusting to the change again going back on them but I’m also thinking if I have a bit of a milk intolerance, I suppose it’s all trail and error, I’m just trying to do to the letter what my consaltant wants me to do, as I need to show I am compliant with my care
I use almond, oat or soya (most protein) for the shakes if your milk intolerant.
Hi
Just a thought now i re read your post above. I take my powder renpro and meretin shakes together at once in water not milk. My dietitsion was happy with me losing the milk content and I still had a big protein hit.
Doing that for a while would maybe answer your milk intolerance worry ?
that could be a good idea, I’ll give it a go thx!
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