Hi all, thank you for all the responses I have had since joining the group. My husband is still in hospital with decompensated liver Cirrhosis. He is still very itchy, has had his stomach Ascites drained, the site of the drain is leaking all the time and annoying him. He also has pain where the site is, right side so not sure if it is liver pain. His legs have gone down somewhat but still swollen a bit. He is very weak and is a little confused but not overly. He is still going through the detox with Librium. He is not sleeping at night and then feels so exhausted during the day. The doctor says he is stable but I am still so scared that he will take a turn for the worse. I am getting in to see him as much as I can but also have teenage daughters to take care of. He gets annoyed with me when I ask too many questions. He didn’t want me present when Doctor came to talk to him but I insisted to stay. He wants out of the hospital and the staff and myself have to keep persuading him to stay. He is on antibiotics too and needs drain site rebandaged regularly. Is there any hope for him ?
Decompensated liver questions - British Liver Trust
Decompensated liver questions
sorry to hear your going through a rough time. Are are too we are on week 8 out of 9 in hospital with my hubby it’s been such a rocky ride, and trying to balance visiting and the kids it tough just know your doing an amazing job. If the drain site is still leaking ask your ward staff if they are able to put a colostomy bag over the site to collect the fluid, your hubby may find that more comfortable.
I’m really sorry to read your post, I do hope you are as ok as you can be and that you are looking after yourself through this. There is every chance that the hospital will nurse him through and get him stabilised. He’s in the right place and needs to stay there so that they treat his condition. The key thing now that he’s been through an emergency detox is that he keeps away from alcohol. It’s really important that he remains abstinent. When the hospital discharge him make sure they have referred him to local alcohol services so that he has support with this. I was in a similar position to your husband four years ago and quit alcohol and haven’t touched a drop since. It took time to recover but with support, a good diet, exercise and no alcohol my body recovered and I’m pleased to say that I live a normal life with no medication. My bloods are normal and I feel well. So all is not lost. The liver is a remarkable and resilient organ that is capable of recovery if we treat it well and take away the thing that’s damaging it.
I am sorry to hear about your husband. You must be so worried and I hope the hospital can stabilise him soon. My husband has had 6 drains and to date they have always been done on the left side to avoid any damage to major organs. Only one has been painful and this one developed something like a huge blister (bleb) that went down after about a week. He said the doctor who did the drain was distracted and not paying attention To date none has leaked. May I suggest you have a chat with a BLT nurse on the helpline to get some advice. They are amazing and can advise you which questions to ask the doctors. It must be so hard for you juggling everything and I know what you mean about expecting the worst. I am sure there is hope for your husband but in the meantime, don't forget to take care of yourself too.
I'm so sorry to hear your situation. I've balked at replying but I need to in case what happens to your husband is what happened to mine. Last January 10th I tookhim to hospital...decompensated liver. Child pugh C. Got drained and plied with albumin. Let out after 10 days......had a gastroscopy to check for varices. Needed to receive outpatient albumin twice a week. Thought we were in "reboot" his liver mode. Ended up back in hospital....more drains. More albumin, coagulants, blood. Like your husband he never wanted me to ask questions or talk to the doctor. Rebooting wasn't working......talks of liver transplant started and "keeping him alive ". On 1 particular day he really wasnt well. Was sleepy. On Saturday 23rd march I dragged his doctor aside and asked what was going on. He said he was dying. Going into a coma. (HE) Might come in and out of it for a bit. He woke up Tuesday 26th and ate breakfast. Wow! He's coming good we thought. Thursday 28th Doctors said they were keeping up active treatment. All good. See you after Easter. He died Easter Sunday.(10 weeks since taking him to hospital)....we had packed up and left before his team came back on the Tuesday. Why am I telling you this? Get your affairs in order. Wills etc.. accounts and credit cards in both names. (Have Doctors even talked about this?)
Ask for his MELD score or at least get the figures that make it up. Track it. Creatinine, biliruben, INR, sodium, albumin. They do bloods every day so ask for them. Find the link to the calculator here. Plug in the figures
mdcalc.com/calc/10437/model...
I really hope I'm out of line here and his score is low......but it might inform you better
I used this to track my husbands progress.
Is your husband in liver transplant zone? Most decompensated liver cases are, but in Australia you have to wait 6 months (off alcohol)..he never made it.
I sincerely hope your husband can turn his around. I don't mean to be doom and gloom. But preparation for the worst is key....I would not have been able to do his will by the time I knew the end was near. He was too out of it.
Wishing a positive outcome for you your husband and family....just be prepared
Thank you so much for your reply. Really sorry for your loss, this is such a horrific disease. They let my husband come home yesterday evening. He is really weak and seems more yellow today. He has an appointment in the outpatients clinic in two weeks. He couldn’t sleep last night for the itching so is exhausted today and is staying in bed, got up once and took his medication. He is now sleeping and barely answers when I am talking to him. He hasn’t eaten today and that worries me. He said he needs to sleep to catch up on sleep but am worried he could be slipping into the HE. Hate waking him as maybe he is catching up on sleep as just can’t sleep at night. He hasn’t eaten today and just taken one of his protein drinks. This is so worrying. How do I know if he is tired or getting worse?
I hate that this is happening but here goes. A little surprised based on what you've described that they've let him home. Constant tiredness is a sign of possibly HE and /or body shutting down. I would text my husband every morning before my visits until 1 day he didn't respond. Noticed he wasn't doing his crosswords anymore...
Is he irritable? Half lucid, brushing you off physically with his hands? Can he answer basic questions like who he is? Who you are? The day and date? Where he is? Irritability(and sleepiness) was the first sign of him going into a coma
Whhen he woke up, We used the GCS (Glasgow coma scale) 3 areas of response 1. Eye opening 2. Verbal response 3. Motor activity. Understand it better at this link
medictests.com/units/glasgo...
Is his Ascites coming back? A sign liver isn't coping......
If he's still jaundiced, that's his biliruben. Note if his urine is dark and if his stools are pale. Another 2 signs
I note also he was on antibiotics - probably for SBP. Spontaneous Bacterial Peritonitis. (Probably in his first ascites) Are they not continuing with that? The trouble with liver disease is they are prone to infection. Open Ascites drain wounds. bleeding etc
If his blood coagulation factor is off - INR, also means he can just bleed out. It's a lot of these sundry things that end up compromising them
Did you manage to get the MELD score data? Be interested to know where he is at on the scale.
Knowing his scores daily will tell you if he's getting better and note in particular his INR and biliruben and albumin results are key. Might be in his discharge papers? You have a right to know. Ask for past bloods to see if they have been trending up or down
Are his kidneys ok? Keep an eye on that too. From his bloodworks. My husbands Doctors said as long as he maintained a good BP and could respirate on his own......that was OK until 1 night it crashed. His kidney function halved overnight. Once there is multi organ failure.....its not good......it halved again the next night to 25% functionality. Saturday 30th we took him off active treatment and onto confort care. Early Sunday morning he was gone. He had only just turned 53
I'm so sorry Oreo10. I hope my experience and learnings help you through this. I am happy to assist you try to understand what might be happening. I'm not a doctor. Just a wife who learnt pretty quickly how to learn what was happening. Again I sure hope he can pull through.
What instructions did the hospital give you when he was discharged?
Thank you again for your detailed response. I don’t know any of his scores etc as the doctor didn’t go into that with us. I was just told to make sure he takes the medication, abstains from alcohol and low sodium diet. He was a bit more alert yesterday but still not eating much but taking the two protein drinks that were prescribed for him. He still can’t sleep at night due to the itching and I did get hospital to prescribe something for that. It is a dissolvable powder and hoping will work soon. He is weak and just shuffles around the house and keeps going to bed during day to keep warm as he feels cold all the time and we have heating up full blast. Feel at a loss through all this as all I can do is make sure he takes his tablets. Stomach doesn’t seem to be bloating further but can’t tell that much as he is layered with clothing to keep warm. He is down in the dumps too and doesn’t smile or seem in good spirits, just seems deep in thought but when I ask what he is thinking about he says nothing. Finding it all so hard.
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