Although I’ve been on this great site for some time now I still find myself questioning my own symptoms & feelings.been on transplant list for 13 months with HCC & cirrhosis and generally been fairly lucky regards the way I feel as I’ve also been able to work but am finding that it’s becoming harder & harder to maintain this.am getting more frequent bad days as in aching and feeling exhausted which is really getting me down. How do others in this situation deal with these feelings? Any advice greatly appreciated
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Your symptoms are completely in line with having liver disease.
I'm amazed that you are managing to work, for me this would have simply been impossible. However, you must do what is right for you as long as it doesn't make your condition worse.
For me the biggest way to cope was having people around me who understood what was happening. I never had to explain or feel guilty if I was feeling so tired and exhausted that I had to lie down and sleep. This could happen at any time of day and the sleep could be as long as a straight 48 hours. My partner (now wife) had a lot to contend with but she just got on with it and supported me through my illness, transplant and recovery.
You just have to be honest with yourself and those around you, at home or work. Tell them how you feel and get them to understand how hard you work toward having a 'normal' life, but there will be times when you just have to give in to your need to rest or sleep.
Importantly, recognise that it is hardly surprising if you get depressed. But you shouldn't worry about having to accept that sometimes you cant deal with this without some extra help. Your GP or transplant coordinators will be able to provide you with the right support and give you appropriate solutions such as counselling or if necessary medication.
You are not alone, there are others in this forum who are dealing with life with a failing liver and will give you all the advice / support that you need.
Point those you work with to the British Liver Trust website. There they might get a better idea of what liver disease is and how they can best support you.
Hopefully, very soon you will get that call from your transplant centre telling you that they have a liver waiting for you.
I have been lucky in being fairly active as I know many are not,it just seems the more treatment I have such as embolisations the longer and harder it is to remain So.i will talk to my clinical team and actually have a appt tomorrow to see if I can maybe improve my diet or poss meds to be able to carry on working as am a terrible stay at home patient. Hopefully the call will come soon but again realise there are people who are more desperate than me.
I'm having to take ill health retirement as work has got too much for me.it was a hard decision to make but in the end we thought it would be better for my health. I really love my place of work and it will be a big wrench to leave but I will stay in touch with everyone. Take care Lynne
Am much the same to be honest, I’ve been to see my consultant who was very good in explaining why I probably feel this way (cirrhosis),my liver is coping quite well with everything but simply has bad days aswell as good it’s a case of adapting my life around this my work are fantastic with me and will allow me to work to how I feel which as you probably know is good and bad.
Am sorry to hear you have had to leave work as you obviously enjoyed it but your health must come first and this will probably happen to me at some point. Please try to keep your chin up as we all care & stay strong especially on them down days
Am a lot better today thankyou, it’s so odd how I can feel one day to the next. Rang co ordinator today to say we wanted a few days away as haven’t been away for 13months since been on list and they said there happy as long am within 3-4 hours of hospital which we will be. They also said that I could be suspended for a bit if we wanted so that we didn’t constantly wait for that call but decided against that.
How are you today?still trying to get your head around work I should imagine
Yes, feel like crying all the time but we have to keep smiling don't we?!? Take care
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Possible PBC/Fibroscan/dull ache 
Liver ache
decompensated cirrhosis - aching
