My wife has been diagnosed with third stage liver disease. She has complex medical issues having had pancreatitis in the past, diabetes, brain injury and mental health problems.
In recent months she has had build-ups of fluid in her abdomen and lungs, various infections, inability to keep food down, muscle wasting and weight loss. This has led to several hospital admissions and twice in the last few weeks to her being in intensive care on a ventilator.
She's out of ICU now in a ward being treated for hepatic encephalopathy and completely confused and paranoid.
Her difficulties stem from alcoholism. No blood alcohol on current admission but there has been on most previous admissions.
Hospital attitude seems to be just to manage the crisis and then get her discharged. They haven't spoken to me or her family and are v evasive when we ask to speak to them. We have been told she isn't eligible for transplant until she satisfies a multitude of criteria including 6 months abstinence from alcohol. But there's no follow up and no one in the NHS seems to care. Drink seems to be an excuse for doing nothing.
My wife doesn't have the wherewithal now to know what's going on or ask the right questions or to relay info to me and her family.
We have a young son and I just feel like we are losing my wife gradually but are powerless to do anything about it.
Any advice would be appreciate do. Sorry for such a long post.
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Idlewild
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This is a tragic situation for you and your family and I think it is fair to say that there are no quick fixes. However, your biggest potential ally here is your GP who would be responsible for referrals to appropriate specialists. In your situation, I would look for an early appointment with GP with a request for an appointment with a gastroenterologist or hepatologist.
What you have been told about 6 months sober and other criteria seems to be accurate but this then needs to be monitored by appropriate specialists who can guide you and her through the process of getting sufficiently well to meet the criteria for transplant. You will have, I am sure, read of a number of posts on this site from people who have had transplants after a very poor initial prognosis.
While there is an element of luck in pursuit of this, persistence is probably more use to you, so ask for a referral and push for an early appointment.
sorry to hear that about your wife you need to be more direct with them and not let them do nothing but it is a tough one i hop youve got a good liver consultant as for transplant there criteria is very tough but ur caught in a catch 22 but u must keep on dont let them brush you aside
Have the doctors given your wife any help to become alcohol free? If it's that big of a problem they can't just expect you both to just get on with it!! I don't know how efficient your GP is but don't rely on him to keep things going forward! You have to be persistant to push through tests, get results and help needed. Show them that her life is valuable to you and your not going to be passive about her care no matter what the cause! She's sick and needs them to fight her corner as much as you are. Hopefully together as a team I'm sure you can do it!! Good luck!
Definitely you need to be persistent and direct bordering on the obnoxious.
Starting with your GP whose support you do need. As stared above you want an urgent referral to a hepatologist, who will then direct your wifes care. My stepmum is on the liver transplant list(12 months) and exhibits all the symptoms you describe. She is on Rifaximin which is an antib that will manage the hepatic encephalopathy (confusion) as well as Laxido which is a laxative which will do the same thing. She has regular drains for the ascitic fluid. As well as numerous other medications.
The abstinence from alcohol is a biggy. START NOW. While youre waiting for appointments you need to prove commitment as well as giving the liver a chance to regenerate. She is 3rd stage my stepmum is endstage so your wife may have some opportunity to turn things around.
I cannot stress enough how persistent you need to be to get her referred. I became Attila the Hun and once she entered the hospital system and hepatilogist care she was on the correct path. Beware of departments not talking to each other and be prepared to chase, chase, chase.
Sorry for the long reply, so much more I could say, best of luck any help you need, shout!
We too have had similar problems with departments not talking to one another. I have also had to get assertive with doctors and consultants regarding my husband's treatment. It often feels like the left hand doesn't know what the right is doing!
Obv with your wifes mental issues etc it may take time to settle on most effective medicine but stick with it!
My stepmum takes 3 of the Fresubin energy drinks every day they supply massive smounts of calories and have helped sort out her weight and muscle loss.
A recent documentary on the NHS revealed that a liver transplant costs the NHS around £70,000. The assumption is that, with the scarcity of donors, picking the recipient isnt a quick decision. The emphasis with your wife will be working to getting her off alcohol and healthier, so as others have said you need to work with your/her GP and use sites like this to pick up tips and get support for yourself. Thoughts of transplant being a solution need to go to the back of your mind at the present. Wishing you well.
If it's difficulty in abstaining from alcohol, Ask if your GP will directly or via a referral put your wife on disulfiram aka Antabuse which has been successful for many drinkers, it essentially makes the user violently sick of mixed with alcohol, whilst extreme, it acts as a detterant, your specialist may need to look into contraindications in case of hepatoxicity
Hello, Im so sorry to read about your current situation. I thought I would mention something that helped me when I was in hospital with liver failure. You mentioned your wife also suffered with mental health issues which I too have. I also drank heavily and this led to my first liver failure and now cirhossis, but my saving grace when I was on the ward was that my mental health team including psychiatrist made sure that I
was receiving the best treatment and insisted on speaking to my doctors to ensure I was looked after properly. My consult psychiatrist kept a close eye on the situation and would have with consent intervened. Spent all day thinking about your post and really feel for you and your family but thought if your wife had a mental health worker you could get something productive done that way. My mental health social worker was also involved. Just a thought as I can draw on my personal experience. I hope this helps but Im sorry I can't think of anything else.
I have always struggled with a 'plan' of care. There doesn't seem to be any 'care plan' in place although a whole heap of people involved in his care. So my clear advice will be - see the PALs officer - create a plan - which you can follow - and ask to be seen by all people involved in her care. Keep/ask for all reports written and file these. Take these with you to reference (especially when seeing different people). I also write a diary of notes/results - which I can reference easily. Keeping obs at home helps as well - so you can say 'how they are at home'. You must not allow her to waste away - this is easier said than done - due to the HE and the way she feels she would not be on a positive mode.
Take care of yourself also, as you are now having to be there for everyone.
HI my hubby is at the last stages of cirrhosis but it's not with alcohol it's with tablets he was on to help with his Arthritis .
He had all the test he had to have a liver transplant but he wasn't able to have one cos of his fitness an diabetes.
All I can say to you take one a day at a time.
He's doing fine at the moment he's rent through were he 2 as nasty towards me but since he's been on lactlouse an eating healthy an drinks milk as he didn't like those drinks as they made him feel worse.
He's gain weight an asnt been in hospital to been drained for nearly 12 months now.
We go to leeds liver unit every 3 months which are very nice muses an doctors who help with any questions we need to ask them.
Hospice can help with you an yr wife which I didn't know they could help as 8 thought it was people with cancer but it's for people who are critically ill.
which I have a day of rest on a Thursday where he goes to hospice (mcmillans ) where they are other people who are in the same predicament as he is an I am able to do my own thing for a few hours without worrying about him.
Amongst other things they can help you an your family get through what u going through.
I am very sorry about your wife. I am 58 & was diagonoised with hep c 20 yrs ago. Now i have cirrosis & just found out last night. I have bad swelling & very discolored legs (just bottoms) My liver started to fail 3 times . But the last 13 yrs i have been fine. Just very tired and starting to lose weight. My liver problems come from drugs. I have much empathy for your whole family..Praying hard!
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