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Cirrhosis and encepalopathy nightmare

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Posted 9/4/2006 2:11 PM (GMT 0)

Hi All - I'm brand new at this chat room thing altogether...can anyone put some sanity back into my life? 8 weeks ago my lovely husband (age very young 71) who had MS, Diabetes and COPD was having a good day. Burger in one hand, basssett hound puppy on his lap. Now his ashes are in my living room. Because of all of his health issues he was blood tested regularly, was prone to chest infections but we coped pretty well. For the last year or so his regular diabetes checks would come back with the doc saying 'slightly elevated liver levels'. I swear we asked each and every time, should we worry, should we be doing anything....we got told fatty livers sometimes went along with diabetes and to chill basically. Well, 8 weeks ago he went from burger and bassett hound to COMPLETELY insane with encepalopathy in 4 days straight. First it was hepatitus, then Cirrhosis, then just 'bring in the family its complete liver failure.' He suffered for weeks, had the worst hallucinations ever, that just went on and on...he ripped out his feeding tube, his ven flon, his catheter...this man was normally a ***** cat. He finally died after hospice (thank you thank you ) brought him home, and I'm shell shocked. How can someone, watched closely because of other conditions go into liver problems with no-one noticing the seriousness of it all. How can something as evil as encepalopathy exist in this day and age - because of his paranoia that everyone was trying to kill him getting lactolose (not sure what the american brand name is - laxative given in liver failure to help clear toxins) and his other drugs down him was near impossible. I swear the whole experience was like something out of a Stephen King book and I'm just searching the internet for whether this experience was typical or rare or what - my head is a mess, I was his carer for 10 years and I didn't see this coming. Comments anyone?

Posted 9/4/2006 3:11 PM (GMT 0)
welcome leece,,,,,,,,wow,how terrible to go through all you have,,,,,i am so sorry about your husband,,,,,im not sure if this is something others have gone through or not,but i do think that when some parts of the body are worn out,it can affect the whole body,,,,,,im sure some others on the forum will be able to help you,,,,,if not give you answers,will be able to offer support in this bad time,,,,:hugs: btw,maybe you can come to our chat this afternoon,,,,4pm est,,,,just click on chat above,enter your user name and password,and double click on hepatitis room,,,,hope ya can make it
Posted 9/4/2006 4:12 PM (GMT 0)

Hi Leece and welcome to HW. I have been going through this nightmarre with my husband since December. I can sometimes tell when the encephalopathy is starting to kick in, sometimes it comes without warning. He has gone into coma's and near coma's. I have to work on weekends and I never know what I will be returning home too! When he does this it is because the ammonia levels are elevated big time. There are many things that can cause it to rise...infection, electrolyte imbalance, eating too much protein and other things as well. My husband, I noticed right before getting bad was very forgetful and had fluid build up. He is diabetic, but I have been told his liver caused it. Cirrhosis does not happen over night it usually take years to develop to end-stage liver disease. There are so many drugs that are prescribed and over the counter, that can cause liver damage. But elevated enzymes should be checked out by the doctor. My husbands AST & ALT have been slightly elevated, which really does not show the whole picture, it could been dismissed easily if it had not been for other symptoms, ascites being the big one.

I am so sorry you have lost your Love! My heart goes out to you!! I will be praying for you!

((((BIG HUGS))))

Teresa

Posted 9/4/2006 5:19 PM (GMT 0)

Thanks all for the feedback so far - I had no idea that people could come in and out of encephalopathy for months etc etc...its all starting to make some sense. I confided in family etc etc about 18 months ago that Ronnie was having trouble hanging onto times, days, appointments etc. Sometimes he'd have to be reminded twice in one day where he was going. I really honestly thought it was the onset of dementia on top of every thing else. As for the Ascites - well about two weeks before everything went pear shaped he gained 14lbs just like that - he was already on diuretics and the doctor just gave us another one to add in and said come back in a month - guess that could have been the warning we missed. By the way apologies to teh lady that wanted to 'chat' - haven't a clue how that works and I don't know what EST is...I'm assuming you're in America??

Theresa I'm so sorry you're in this night mare...I really don't know what to say. Ronnie would become very, very hostile and hiss and growl like an animal - the only mercy was when he had more lucid hours / odd half day etc etc he wouldn't remember most of the awful stuff for which I was greatful. We did finally (after 11 years) get our marriage blessed while he was still in hospital - the vicar was brilliant and moved like lightning to do it when Ronnie was lucid and knew what was going on and could partake - that was lovely. Is your husband waiting for a transplant or anything like that - I really hope his prognosis is hopeful. Until this happened i'd never really thought about what the liver did  - I just chucked Ronnie into the dr's surgery every time his cough changed pitch because we were always told lung infections werer the big thing for us to look out for! I guess none of us are guranteed a 'tomorrow' are we? It must be very frightening when your husband approaches coma. Ronnie became very painful after he'd been home two days - muscle rigidity set in (not helped by not having his MS meds) in a big way and hospice set him up on morphine. I was so thankful that he got peace but he basically went to sleep and didn't wake up again so I don't really know if he was in a liver induced coma or whether it was the morphine - bless him, he only went totally jaundiced in the last four hours of his life! When he was in hospital there was an alcoholic in the bed next to him that went green for weeks - it was awful, it scared his children - and so sad, he was only 53. I keep trying to think that in a way we had it good...even if we'd known Ronnies liver was failing what would we have done? Because of his age and other illnesses he wouldn't have even made it onto the transplant register, so, we'd have just worried about it all. As it was, it was like BANG - deal with this! Theresa I soooo hope your husband is having a good spell. I'm very grateful that I was never shy with the camera and I  have a lovely selection of pictures of Ronnies - I came to realise when tomorrows aren't promised you can never have too many pics. You and your husband are in my prayers also.

Posted 9/4/2006 6:42 PM (GMT 0)

Hi, Leece, My husband is listed for a transplant, his prognosis does have hope if he can get a transplant. He has severe ascites and as it is standing now he gets a paracentesis about every 2 weeks, the TIPS procedure is out of the question for him, because it can make encephalopathy worse and I don't want to have to deal with that any more than what I do already. Mark went into a coma without advance notice on Easter weekend. I was scared to death!! Since then his encephalopathy varies, he can be quite lucid, be off a little, or way out there. I can stop the progression if I see the signs, but I have come home from work from running errands and have found him hallucinating, semi comatose, and in a coma after being gone just a couple hours. He has been in the hospital so much that people know us by name at the hospital.

It was very wonderful that you had the chance to have your marriage blessed! The wonderful memories you have of your husband are yours to keep. I know you are going through a hard time now, so be kind to yourself, take one day at a time. Would enjoy talking to you more.

Hugs,

Teresa

Posted 10/5/2006 12:12 AM (GMT 0)
i read your mail about your husband and my liver is doing like that i,m also taking lactulose milk thistle and no telling what else plus i must be careful what i take because i,m also hiv medication is strong and liver can,t handle it damed if i do damed if i don,t i,m rather in a confused state if i don,t take care of both of them one of them will take it,s toll if you read this fleece please give me a little insite as to what to expect i sure would like to know sorry ror your loss malboo
Posted 10/5/2006 2:03 AM (GMT 0)
I AM ALSO SORRY FOR YOUR LOSS. IT SOUNDS TO ME THE DR MADE A BIG MISTAKE. THESE DRS ARE NOT gods I HOPE YOU GET GOOD LEGAL ADVICE... MAY GOD BE FOR EVER NEAR
Posted 10/5/2006 3:39 AM (GMT 0)
Thank You Jeff123 I hope so to I sure need to get some answers where better to look than to people who have dealt with it. Are the one,s where it made a big impact in their lives I found this forum by accident glad I did My biggest concern is Health Issues and these are My Health Problems again Thank You
Posted 10/5/2006 1:16 PM (GMT 0)
welcome monster and jeff,
monster,im dealing with encephalopathy with my husband ,,also he has no appetite,very fatigued and though some of the fatigue is due to his heart problems now,he has been like this for about the last 2 yrs...we knew something wasnt right with him but neither of us had health insurance,so he kept putting off getting checked..looking back,,his liver has probably been causing problems for him for a few years.. With hubby,what we try to do when deciding which health issue to deal with ,is prioritize,,his heart issues are the most important immediate thing,so we put that first in priority,,,,,he even went off the interferon treatments for a while because they were too hard on him while hes trying to recoup from the heart problems,,,,but he soon will be starting back on treatment of some kind,,,oct 10 to be exact. we are hoping his new specialist will try a different treatment that wont be so rough on his body. I know this has to be rough on you having these problems,but keep your faith,and keep your head held high,,,things have a way of working out exactly as they are supposed to,even if we dont think so at the time,,,,do you have a GI dr or hepatologist? maybe all your drs need to confer on what is the best course of treatment considering everything together,,,,,,dont be afraid to ask your drs questions either,,,if you dont get the answers or they seem "too busy"to talk to you,,,find another dr,,,,,,,one thing ive learned since all this with hubby has started,,you have to keep an eye on the medical profession,read as much as you can about your health conditions,and be pushy if necessary about your treatment,,,,,,,,good luck and feel free to ask any questions ,,,someone will try to help you find the answers,,,,,,or just vent if you need to,,,,,,
Posted 10/5/2006 7:47 PM (GMT 0)
Hi Wheredidigo and You also Jeff, I know things have a way of working themselves out I also beleive to make them workout You must put forth A lot of your own effort. I know you read in My first thread that I am also HIV pos. It has taken all my effort to learn to live with it My dr. can,t help me with a problem that she has never had to deal with they still know nothing about it. The only ones who do are the ones who live with it on a day to day basis. PILLS,PILLS the cure for everything they are holding your problem in check while they are tearing your other organs up, the ones you never had problems with before. I guess you pick the one that will give you the least ammount of suffering and give that one the beating. There is only one Answer Wake up and make the Day your having Your best one ever do that everyday and you will Make for yourself a very HAPPY LIFE LOVE Monster
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