Looking after Husband and loosing the plot !!!!!!

Hi - Hopefully someone will be able to share their experience or give some advise - as I am reaching the end of my tether !!!!!

In September 2011 we found out that my dear Husband Rob (46) has, as far as we know - Established Cirrhosis caused by Hep C (geno 3), Portal Hypertension, Enlarged Spleen, Inflamed Gallbladder, Oesophageal Varices (6 grade III recently banded and so far ok) - They attempted PegInterferon/Riba treatment last year and he managed 29 weeks before it had to be stopped due to side effects (bad blood results etc) - after this he was taken to hospital with abdo pain and they found that he was Type II diabetic - insulin dependent ? The virus is still present. He constantly suffers with abdo pain and it is now managed with Fentanyl 12.5mcg and the odd tramadol - he was taken into hospital in March with Encephalopathy - he was already on Lactulose - He spends everyday in bed, and is asleep most of the time. If he attempts to do anything - like putting some rubbish out or hoover he drips with sweat and has to sit down, if he comes downstairs to watch TV with the family he normally falls asleep within an hour and goes back to bed. He has recently become quite aggressive and argumentative about nothing ? - His MELD score is 14 and Child Pugh B?C depending on the Encephalopathy. No one can give me any answers as to why he feels so tired all the time - I have read many others stories and even people waiting for transplant do not seem to be as bad as he is ! - we are hoping that he will be listed for transplant when we next go to Kings in June - can anyone shed any light on why he is so tired all the time ?????

Anything relevant would be greatly appreciated as I feel so upset by the way he is and I am trying to make sure that he is getting the best care he can, but feel that something is just not right !!!!!!!!!!

6 Replies

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  • Hi Robs wife. I have all the same symptoms as he has, but I am not diabetic, carry on reading all of what people have said on here, some of it will make sense. Also go on the e/mail site on here, it tells you a lot of what you are asking. its on the home page. I don't have hep c but my son did for many years & cirrhosis. How long has he had this ! I feel more & more worn out as I think my body is trying to do so much more work as the liver is not working like it should, I eat snacks little & often, I find I feel so sick, and force myself to eat and feel better. I find I go to sleep a lot, my son used to fall asleep in his dinner wake up & carry on eating. Pain can wear you out. I have been worse in the last few days. Feel I need something stronger than tramadol. hope all go's well at Kings,

  • I'm suffering with the same problems I'm emotional as hell my mood swings are shocking to the point of embarasment.

    I've got an appointment in a week, I've had a recent endoscopy and my varices which have ruptured numerous times have subsided to grade 1 following banding.

    I too sweat massively when I do the smallest task can't sleep when I feel I should be then just dropping of during the day particularly after my mess.

    I have no appetite I haven't eaten a thing since Monday and I have terrible headaches.

    I was feeling positive following the endoscopy but I've shed a stone in just over a month and I was already skinny and the aches and pains are much worse.

    I can't remember anything short term. My gp has given me senna now as the lactulose causes havoc with my stomach.

    I hope you can get this sorted and I really admire your commitment to your husband my fiancee has been like a rock for me.

  • Hi there. I am 21 and have gilberts which is a weakness in the liver but it is supposedly mild however I can tell you now I feel tired everyday! Literally gonna bed soon as get in from work . I can also tell you that my gf is diabetic but type 1 and she is always tired too. So for your husband it's a double whammy but sorry to hear everything that is wrong with him he sounds really unlucky . God bless

  • hay be there for rob,i cant think how hard it is so hard for you.I will tell you the story wich hapend to me i drink hard when my dad died,a lovely marige 2 kids my wife and i we together since school.severel ops my wife could not cope she took the kids but i still love thm dearly.my meds,150 fenternel micrograms per hour every 72hours pethidine 50 mg 4 a day gaberpentin 600 mg 3 a day if i toold you all my meds wow it take ages i have type 1 diabeates not good,but you are a good person,i will say this when your sleeping no pain no worrys,i spent so much in hospitel.I suppose rob takes you for granted deep down he feels guilty stay in there girl you are stronger than you think wow im 46 too,hes not selfesh just wants to hide away,hay you make your own mind up no else can do that for you,how hard it sounds i hope you make the rihgt one good luck,dont blame rob or yourself x

  • Why is he tired.

    The hep C virus will make him tired. To combat it, his immune system is working 24/7 and will have been doing so for many years, certainly since 2011 and probably for many years before that. Its like having flu all the time, and we all know how rough having flu makes you feel.

    One of the most important functions of the liver is producing energy. The liver breaks down food and converts it to energy. It also stores glucose/glycogen which is a store of energy. A damaged liver cant do this any more, so someone with a damaged liver has no energy reserves. Once he has done something, however small, fuelled by his last meal or snack, that's it .. empty tank. Ruby's tip about lots of little snacks, grazing, may help to overcome the energy reserves problem.

    The liver also clears out toxins, so once its damaged and cant do that they build up, in your body, your gut, your brain. Makes you fuzzy and sluggish and tired and have trouble concentrating. A bit like battling a permanent hangover.

    The liver also stores vitamins, a damaged liver cant do that. We need vitamins to stay healthy.

    The liver has over 500 functions, so we struggle to function normally when these are impaired.

    Many with HE find their sleep pattern is turned topsy turvy, they sleep in the day but cant sleep at night.

  • I agree with you Bolly, My son had cirrhosis, & hep c he was asleep all day, up all night. I have just started back on lactulose & find my toxins are getting better

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