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Old 06-11-2009, 10:47 PM   #1
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Red face End Stage Liver Disease?

My husband has been diagnosed with End Stage Liver Disease recently. This came after a binge of drinking and pill abusing (he has been on presciption meds -methadone- for years now due to spine surgeries) he is now off all meds except Lactulose and Synthroid. Does anyone have any experience with end stage liver disease and how long one can live with it? He is very confused and cant remember anything - as well as agitated about everything.

Thanks, Karen

 
Old 06-12-2009, 08:57 AM   #2
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Re: End Stage Liver Disease?

when did he last have any alcohol? this would matter to UNOS,the governing body in the US for transplants? have they mentioned transplant at all to you as an option here, even a live donor type from a relative whos a good match for him? unfortunetly, at the stage he is at, transplant is usually the only availiable option.

the confusion is more than likely stemming from a high ammonia level. it for some reason attaches itself very readily to the brain cells and can create mental cloudiness, combativeness and in some cases a complete change in the normal mentation and personlity depending upon just how high it is. and can in some rare cases cause coma if it is not being appropriately managed. it should be being checked on like a weekly basis with his lactulose being adjusted accordingly. its really the only thing that truely helps in ridding the body now of the ammonia that used to be removed when the blood simply passed thru that now blocked portal vein. if you could answer the questions i asked above it would really help to help you in the best ways right now. marcia

 
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Old 06-15-2009, 06:19 PM   #3
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Re: End Stage Liver Disease?

Quote:
Originally Posted by feelbad View Post
when did he last have any alcohol? this would matter to UNOS,the governing body in the US for transplants? have they mentioned transplant at all to you as an option here, even a live donor type from a relative whos a good match for him? unfortunetly, at the stage he is at, transplant is usually the only availiable option.

the confusion is more than likely stemming from a high ammonia level. it for some reason attaches itself very readily to the brain cells and can create mental cloudiness, combativeness and in some cases a complete change in the normal mentation and personlity depending upon just how high it is. and can in some rare cases cause coma if it is not being appropriately managed. it should be being checked on like a weekly basis with his lactulose being adjusted accordingly. its really the only thing that truely helps in ridding the body now of the ammonia that used to be removed when the blood simply passed thru that now blocked portal vein. if you could answer the questions i asked above it would really help to help you in the best ways right now. marcia
Hi Marcia,
Thanks for your reply. The Gastro did say he would need a transplant. He drank last in May - prior to that it was 6 months sober. The doctor said he would have to remain sober for 6 months to get on the list and then he probably would not get a liver due to his past behaviors. He is very foggy , and confused about most things. He has lucid moments - but has now become obsessed with having "6 months to live, " which is NOT what the doctor said. I called him back for clarification and he said he would not put a time frame on it, so I really dont know. In my husbands confusion he now is claiming to want a divorce - sell the house etc.. etc.. because I betrayed him by putting him in the hospital. I am trying to "stall him" as he really is not capable of taking care of himself- has never been a responsicle person (and is much worse now). All he wants to do now is BUY stuff- that he doesnt need.

Thanks for your help, Karen

 
Old 06-16-2009, 07:41 AM   #4
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Re: End Stage Liver Disease?

sorry for all that you are going thru there. unfortunetly it could get even worse for you. if you have not yet done so, just considering what you have stated here as to his behaviors and changes, you really do need to speak to a lawyer(and his doc) about possibly being able to just kind of take over his decision making capabilities in certain ways? do you know what i mean? god only knows, with the escalation of his ammonia what he may do next ya know? you just need to really protect him and yourself from any possible really BIG decisions he could make right now that could have some serious ramifications. i know that part would be hard, but it is something you may need to put into action ya know? just something to think about.

is there ANY family or friends that could possibly consider doing a live donar type of transplant for him? this would at least make things possibly happen a bit more quickly if it could be done this way. just an option for you.

i was kind of suprised to see that UNOS actually changed what used to be at least one year of full sobriety before they would consider placement. interesting. sorry i cannot help you more than this. but i seriously wouldf consider what i mentioned above before he makes some really serious type of decisions here that could really really complicate your life or devistate you. you kind of have to be looking out for your best intersets right now as well as his. if things become too out of hand there for you you may have to consider other options for where he may have to live? just something, depending upon how severe this gets that may also be needed. just trying to rid his body right now as much as possible of that ammonia really is about the most critical thing to make sure gets done. in some cases,depending upon how high it has been and for how long,any brain affectation just "could' possibly become a more permanent typeof issue to have to deal with. this unfortunetly is just what ammonia does to our brains in high amounts. my heart goes out to you hon, and i do hope something good will help to change the current circumstances you are having to deal with right now. just do whatever you really feel in your gut is the right things to do right now. and i would seriously at lkeast consult with a lawyer about his mentation issues and decision making capabilities. this could be downright dangerous too to him and to you too ya know? please keep me posted on all things. do you yourself have a good support system in place? if not, ask the hospital or his doc about the possible groups they may have availiable in this type of situation. you just need a place where people really understand things that are rather unique to this type of situation. hopefully you do have that much needed support for you. please let me know how things are going. take care hon. Marcia
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Old 06-16-2009, 09:03 PM   #5
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Re: End Stage Liver Disease?

Thanks for your help. I wish I could get more information - but no one seems to really want to give an answer , I do realize that they cant and that everyone is different etc.. The last lawyer I spoke with suggested I wait until the doctors felt he was bad enough for me to get "power of attorney" and I really dont want that (she said it is somewhat of a nightmare." Right now , I feel on hold. My son has taken the brunt of this and has since moved out (staying with friends) because he is very mean to him. He does not deserve it and it kills me to see it, so he is better off, but his life has been very badly affected by the addiction as well as the illness and surgeries. Do you know if once the ammonia levels are high do they ever go back to normal; they have gone down some.
Thanks, Karen

 
Old 06-23-2009, 07:27 AM   #6
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Re: End Stage Liver Disease?

hi karen,so sorry it has taken me so long to get back to you. i have been dealing with my own situations(medical) and also we have a dog who developed pancreatitis so its been a bit crazy here lately. i was actually in the middle of this post last week and the dog started to have some issues and i had to stop and was never able to even get back on here.

i was just wondering here,and i really do not know if they can do this or if this is even a possibility with clearing ammonia. but have they ever mentioned just possibly trying like dialysis like they do for kidney failure patients on him? i was just wondering if this would actually work in clearing ammonia too since it would be also considered a form of 'toxin" in the blood similar to what gets cleared with the dialysis/kidneys type thing? luckily for my son, he never got to the point your husband is at so we were within the handable range just with the lactulose thing til transplant. just a possibility for you to ask the docs anyways. other than the lactulose, i really cannot think of anything else ya know? is he having really runny stools or is there alot of more bulk still? i know its a gross question but the longer that ammonia stays within the intestines, the more ammonia just gets absorbed into the bloodstream then to the brain. so the looser the better there.

honestly karen i really do think that it is just that 'bad' enough right now considering your child had to actually move from his home and everything else that is just going on with your husband to just make that decision like soon? when you consider everything that he is doing/done and how this is just impacting everyone else(espescially you the caregiver among other things), i really think its needed just for your own protection at this point. you just do not really know how or what your husbands next decision could actually create for you, ya know? YOU need to place yourself first and get some control back BEFORE he does something worse, thats all i am really trying to get at here.

how has he been since you last posted? anything new develop? i really am so sorry you are having to deal with everything he created for himself. hopefully things will work out in the end. but you DO have to face the reality here of what is going on with him and what may or may not happen too. i am sending you a hug and hope that things will get better. but i would ask his doc about any and ALL options to get that ammonia level down asap or it could become a permanent type of thing that even after transplant wont fully resolve itself. hang in there karen, i reaLLY DO hope you have a good level of support surrounding you there. please keep me posted hon, marcia
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Old 06-23-2009, 08:58 PM   #7
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Re: End Stage Liver Disease?

Marcia,
Thanks - I am confused about this message board, I keep getting lost in it! Son is moved its for the best. Husband has good days and bad- but they had to raise his lactulose dosage because the ammonia was higher (in the 200 range) I know there are different ranges used by different docs so Im not sure how high that is? I appreciate your support- I really dont have any as I am in a fairly new job (1 year) I have to not talk about personal stuff and be in control of my emotions at least until I pass probation next month. My old freinds (retired after 25 years at previous job) are still available to me- but not much contact. I do have freinds but I dont see them much either - not much time for that. Its hard to see the one you love in pain, but then he gets so mean you forget the pity.... its been a long road and I think it will be much longer. The latest ultrasound confirmed cirrohsis - but we have not seen the doctor since.
Thanks Karen

 
Old 06-23-2009, 08:59 PM   #8
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Re: End Stage Liver Disease?

Oh and the stools have been less runny, is that bad?

 
Old 06-23-2009, 09:02 PM   #9
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Re: End Stage Liver Disease?

Marcia,
IS your dog OK?? My dog has turned in to my best friend!
Karen

 
Old 06-24-2009, 08:49 AM   #10
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Re: End Stage Liver Disease?

thankfully the doggie appears to be comiong out of this pretty well, she is my sons little buddy and the thought of losing her after all these years really was not something i wanted to even think about either.

hubbys stools, in order to get the better overall clearance of that dreaded ammonia, really DO need to be kept as loose as possible right now(and yes,that sucks for him). that is what the lactulose is really for. they had to raise my sons a few times over the course of his failure too til we recived that amazing transplant. of course he hated it, but he sucked it down anyway since i really tried hard to really explain what "could' happen if he didn't, but it sucked for him. he just dreaded that little cup like twice a day if i remember right?

if at all possible, check with his main treating doc and just ask if they have ANY type of good support groups at the hosptal where he would go for a transplant or someone who is involved in his medical group of docs who may know something too about support thru this nightmare. does he actually have some level of actual transplant coodinator at this point who you could also maybe ask? its just really important for YOU to be around others who are going thru what you are and can understand what it takes from you and out of you on a daily basis. just being with the other caregivers can help tons and also give you people who you can actually call when you need to just vent off the crappy stuff that just comes along for the ride with this particular brand of hell. that level of support is just really really crucial for you right now, ya know? you yourself are just dealing with SO many things that you really cannot control. finding out how others are dealing with this is really ideal and priceless help to you. even just calling the transplant center of the hopefully future transplant hospital would probably be the biggest help in finding any type of support groups for you. they would have that type of info there.

i really am so sorry with all you are having to deal with right now. but you just DO need some people you can speak to who know what you are going thru, closer by or a phone call away. THAT is just so very important for you to keep from losing it. believe me, i KNOW at least some of what you are feeling right now and it does simply suck to even be there. hang in there hon, and please do keep me posted. Marcia

 
Old 06-24-2009, 09:14 AM   #11
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Re: End Stage Liver Disease?

Marcia,
Thanks again for YOUR support. They wont put my husband on a transplant list yet, I dont think they will until he has been sober for 6 months? I think. Im glad your dog is OK! How long since your sons transplant? I am off for two days now and honestly I would rather do to work- thats a terrible thing to say but its the truth. No more happiness in this house. Off to walk my dog- more later. I will keep you posted.
Thanks again, Karen

 
Old 07-01-2009, 09:13 PM   #12
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Re: End Stage Liver Disease?

Quote:
Originally Posted by feelbad View Post
thankfully the doggie appears to be comiong out of this pretty well, she is my sons little buddy and the thought of losing her after all these years really was not something i wanted to even think about either.

hubbys stools, in order to get the better overall clearance of that dreaded ammonia, really DO need to be kept as loose as possible right now(and yes,that sucks for him). that is what the lactulose is really for. they had to raise my sons a few times over the course of his failure too til we recived that amazing transplant. of course he hated it, but he sucked it down anyway since i really tried hard to really explain what "could' happen if he didn't, but it sucked for him. he just dreaded that little cup like twice a day if i remember right?

if at all possible, check with his main treating doc and just ask if they have ANY type of good support groups at the hosptal where he would go for a transplant or someone who is involved in his medical group of docs who may know something too about support thru this nightmare. does he actually have some level of actual transplant coodinator at this point who you could also maybe ask? its just really important for YOU to be around others who are going thru what you are and can understand what it takes from you and out of you on a daily basis. just being with the other caregivers can help tons and also give you people who you can actually call when you need to just vent off the crappy stuff that just comes along for the ride with this particular brand of hell. that level of support is just really really crucial for you right now, ya know? you yourself are just dealing with SO many things that you really cannot control. finding out how others are dealing with this is really ideal and priceless help to you. even just calling the transplant center of the hopefully future transplant hospital would probably be the biggest help in finding any type of support groups for you. they would have that type of info there.

i really am so sorry with all you are having to deal with right now. but you just DO need some people you can speak to who know what you are going thru, closer by or a phone call away. THAT is just so very important for you to keep from losing it. believe me, i KNOW at least some of what you are feeling right now and it does simply suck to even be there. hang in there hon, and please do keep me posted. Marcia
We go to the doctor (gastro) tomorrow and I am scared. Husband has been very depressed- we hope to get some answers tomorrow.

 
Old 07-02-2009, 09:28 AM   #13
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Re: End Stage Liver Disease?

good luck wih the appt hon. make CERTAIN to simply write down ANY questions that you need or want answers to before you go. and do NOT leave that doc appt til you DO get answers. this is what i have always done with my medical issues and my sons too. otherwise i do tend to forget the more important stuff i just need to know at times. it does help alot. make certain to also write down the answers as well. and DO ask abou any types of support groups that are probably there, already in place and availiable to you too. you just REALLY need a good solid support system, espescially from others who are actually going thru what you are right now. it just helps tons hon, it really can make a huge difference in how to deal with all this stuff. it also gives you that needed time away from the insanity of just what liver failure creates for us when we are the caregivers here. a place to vent is just needed right now for you for many reasons.

just to answer your above questions. the doggy is doing sooo much better after i had to practically max out my poor visa with the freaking vet bills.wow. my son just celebrated his 9th year with his transplanted liver on june 7. that liver was a truely amazing gift that despite having to deal with alot of other insane medical issues post Tx, has been running truely amazingly well for him. that alone has been a true godsend. thanks for asking.

i do hope things go well at that appt. please let me know what you find out, K? hang in there hon, and find some support if you can too. it helps trust me. marcia

 
Old 07-02-2009, 02:34 PM   #14
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Smile Re: End Stage Liver Disease?

The appointment went pretty well.The ammonia levels are down - and other levels look good- he (doc) said that he is doing surprizingly well. So that was a good day. Wow, thats great that your son has been doing well for so long- very encouraging about transplants. The do not want to do any biopsy as he alreasy has cirrohsis- so treatment is not an option - just to stop further damage by healthy living.
It went as well as we could have hoped for.

 
Old 07-02-2009, 04:35 PM   #15
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Re: End Stage Liver Disease?

nunyabe: I'm so sorry to read about your situation. I just lost my dad to liver disease. He had high ammonia levels for quite a long time before he died, and this eventually caused him to die. They went up and down, kind of like a bouncing ball. He would have weeks where he was very alert, but then would have periods of a few days where he was very confused. Fortunately he was never mean, but it was hard to watch nonetheless. He was nothing but the sweetest, most grateful person, which was really sad because there was nothing we could do to help him, even though we believed he deserved everything in the world. I would say this happened for about 3 years, with a gradual downward trend. It seemed like the ball would bounce back up, but never quite as high as it had been before. Toward the end he became comatose. There is no treatment for this. Dialysis does not do any good, and there is no type of "liver dialysis" available. Lactulose is really the only treatment for high ammonia levels. Eating a low protein diet can help keep the levels lower. Breakdown of protein (especially animal protein) in the intestine causes high amounts of ammonia. This is why flushing the intestines out with the lactulose helps treat the high levels. Feelbad is right that loose stools are a good sign that the ammonia is being flushed out. It is incredibly hard on the caregiver though.

I really hope that you are able to get on the transplant list. This is really the only thing to do at this point. Most of the symptoms can be managed, but ammonia levels are probably one of the toughest symptoms to treat.

I agree with feelbad that a support group or some other type of support is going to be very important for you. For one, caregiving in general is extremely hard. Secondly, the fact that your husband is being mean must be very hard to tolerate while still providing him good care. Lastly, I don't think you want your final time with your husband to be one of super high stress for you. I think it would be best for both of you if you were able to get some support and feel that you had some control over what effect this was having on your life. Hopefully, he will get on the transplant list and you won't even have to worry about this for a long time. I am wishing the best for you.

 
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