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End Stage Liver Diease with Siezure
My husband is 51 years old and was diagnosed in April 2008 with End State Liver Diease - he has been doing farily well. Has recently developed some mood swing and memory problems and his abdoninal area is huge. This past Saturday he had a siezure - does anyone have any idea why this would be. Is there anyway to know how much longer he has??? HELP!!!
I'm sorry you're in the situtation you are in. You have no control over what another decides to do. I'd say find some support for yourself and what you are going through.
If the doctors still think he can take tx then without a doubt that is what he sould try. Has he read what End Stage Liver disease is really like? You might print something out for him. It's much worse than some swelling and back pain.
Others have given you some good links. Maybe if you know more you can clue him in. Again I'm very sorry for both of you. Find some help and comfort for yourself.
Good Luck to both of you what ever you decide.
If the doctors still think he can take tx then without a doubt that is what he sould try. Has he read what End Stage Liver disease is really like? You might print something out for him. It's much worse than some swelling and back pain.
Others have given you some good links. Maybe if you know more you can clue him in. Again I'm very sorry for both of you. Find some help and comfort for yourself.
Good Luck to both of you what ever you decide.
JD YES THAT IS EXACTLY WHOM I'M TALKING ABOUT YOU KNOW HIM (KNEW) HIM TOO OH MY GOD I CANNOT BELIEVE THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
My husband was diagnosed in the mid80s before they; knew it was hepc and called it non-a non-b. He didn't die of it - he committed suicide last year. He had his liver enzymes tested once in a while and they were always well within normal range BUT he only had them tested when he was sober. So I'm sure they were not when he was actively drinking (which was most of the time).
Unfortunately they won't let your husband do treatment if he won't stop drinking (the alcohol negates the effects of the meds so it's a big waste of time). I just can't imagine WHY he won't do something about the situation though. Men - I don't understand most of them AT ALL. The men in this forum however are a completely different breed and 99% of them (just to make sure I"m not lying) are the most wonderful understanding men I"ve ever known. They get it. I wish somehow he could talk to them.
Do you know if there is any hepc support group in your area? Someone who might reach out to him?
You should be able to call your doctor and get all the test result information (numbers) immediately (with his permission I guess) medical records don't belong to the docs at all (most of us had to learn that the hard way). They are ours.
Two of my friends died of end stage liver disease. It's not pretty and often comes with many severe complications before death (one was transplanted, developed diabetes, had his leg amputated, continued to drink and eventually died of liver cancer) - he was one of my best friends and I hadn't been diagnosed and always will wonder if perhaps I had gotten it from him in the 80s. Never will know not that it matters but it makes me realize how lucky I was to beat this thing.
you have to talk to the doctor - I just can't think of anything else that might help between that and finding a hepc group that might hve a man willing to talk to him (as you can tell most of us in support groups are there for just that - and would be willing to do so).
It's a chance anyway?
debby
Unfortunately they won't let your husband do treatment if he won't stop drinking (the alcohol negates the effects of the meds so it's a big waste of time). I just can't imagine WHY he won't do something about the situation though. Men - I don't understand most of them AT ALL. The men in this forum however are a completely different breed and 99% of them (just to make sure I"m not lying) are the most wonderful understanding men I"ve ever known. They get it. I wish somehow he could talk to them.
Do you know if there is any hepc support group in your area? Someone who might reach out to him?
You should be able to call your doctor and get all the test result information (numbers) immediately (with his permission I guess) medical records don't belong to the docs at all (most of us had to learn that the hard way). They are ours.
Two of my friends died of end stage liver disease. It's not pretty and often comes with many severe complications before death (one was transplanted, developed diabetes, had his leg amputated, continued to drink and eventually died of liver cancer) - he was one of my best friends and I hadn't been diagnosed and always will wonder if perhaps I had gotten it from him in the 80s. Never will know not that it matters but it makes me realize how lucky I was to beat this thing.
you have to talk to the doctor - I just can't think of anything else that might help between that and finding a hepc group that might hve a man willing to talk to him (as you can tell most of us in support groups are there for just that - and would be willing to do so).
It's a chance anyway?
debby
Thank you for your support. He found out that he had Hep C back in 97 and the Dr. tried to get him to treat then and he would not. So the Dr. told him that he needed to not drink not another sip ever and he did not listen to that. The Dr. told him that he should have blood checked at least one per year and he did not do that. Finally about a year ago his abdominal area strted to grow, we just thought that it was his age and the fact that his diet is not the greatest. But then he started complaning of paid in his low back and stomach area so I made him go to the Dr. in March. He blood work was bad, I still have not been able to get the answer of the exact levels. All I know is that they rushed him in for an unta-sound, saw something that they thought was a tumor and then send him in for the CT and from there said that they had to do the biopsey. He almost stoped after the CT scan but I insisted on the biopsey. It was not liver cancer but the results are not good. I really am not sure what his resoning is on all of this. How long did your husband live after is diagnosis? And how painful and sick was he in the end? I am so fricken scared.
Jesus I'm so sorry. It isn't fair - not at all. It just goes to show how different people think because the only reason I knew I'd treat no matter what stage I was was I wouldn't leave my kids for nothin'!
He's so young - I don't understand it at all. 51 is just WAY too young to not care. do you think he could just be scared? Maybe telling him how many of us in here who are his age and have treated successfully are doing that even though it's not fun it's doable he might consider it? I just can't understand anything else except being scared and just not thinking it would work.
Talk to the doctor. Maybe he can make him undertand the road he is going down is very very dark and scary - the treatment road is a much better alternative.
I'm so sorry you are in such a bind. My ex wouldn't treat either - it didn't matter in the end but I just couldn't really understand it either (he never even had a biopsy and kept telling me he was fine and didn't need to a bit different story) - these guys just DONT understand what they do to their children and wives. I wish I had something that could help you, I really do.
He's so young - I don't understand it at all. 51 is just WAY too young to not care. do you think he could just be scared? Maybe telling him how many of us in here who are his age and have treated successfully are doing that even though it's not fun it's doable he might consider it? I just can't understand anything else except being scared and just not thinking it would work.
Talk to the doctor. Maybe he can make him undertand the road he is going down is very very dark and scary - the treatment road is a much better alternative.
I'm so sorry you are in such a bind. My ex wouldn't treat either - it didn't matter in the end but I just couldn't really understand it either (he never even had a biopsy and kept telling me he was fine and didn't need to a bit different story) - these guys just DONT understand what they do to their children and wives. I wish I had something that could help you, I really do.
I do understand how sick he is, I think that he does not want to face the truth of it all. He has not even told his family and told me that I could not tell anyone. As for the trasnplant center, I will speak with his doctor when we go in this week. I think he feels that that would just be a waste of time and money as he is 51 years old, with active Hep C and Stage 4. He feels that he would most likely pass before he even got a liver and so why bother. I don't know he is being really selfish about the whole thing. I am trying to help him, but he will not let me. He says that he is just not going back to the dr. at all and that when he dies he dies. The whole thing is killing me and tearing my kids apart.
Unfortunately if he is that bad arleady where he has developed ascities in end stage liver damage the only real option available to him at this point is to go to the transplant center nearest you as described above. He isn't going to have to worry about it very long though - you need to get your house in order and take care of YOU because before long you aren't going to be worrying about a divorce. It's very sad but very true.
You can't force anyone in life to do something that they don't want to. Does he truly understand how critically ill he is? Do you?
I would go and see a lawyer - get your affairs in order now. Make sure that you find a good support group to help you through this. My husband died a year ago (not of hep) and it was the hardest time in my life...on top of all the mental anguish trying to figure out how to bury him and the cost of everything was overwhelming.
I wish you all the best. Seriously, you need him to see a transplant specialist soon but take care ofyourself first.
You can't force anyone in life to do something that they don't want to. Does he truly understand how critically ill he is? Do you?
I would go and see a lawyer - get your affairs in order now. Make sure that you find a good support group to help you through this. My husband died a year ago (not of hep) and it was the hardest time in my life...on top of all the mental anguish trying to figure out how to bury him and the cost of everything was overwhelming.
I wish you all the best. Seriously, you need him to see a transplant specialist soon but take care ofyourself first.
I have tried to get him to take the treatment but he won't. Hardest part for me is I had contacted an attorney to file for divorce 2 days before we found out how sick he was and not I really do not know what to do. I care about him deeply, but our marrage has been on a downward spiral for the past 5 years and I had just had enough. Now I feel that I can not leave him because of his illness. But I really do not know how long I can hang on. Atlease if he would take the treatment, and maybe get better then I could make the decisions that I need to make to move on with my life. As it sits right now I am just in limbo. I hate this. Thanks for your kind words though.
I have had this disease for who knows how long? Maybe over 35years. I never knew it and of course never treated for it. I was a social drinker as well as a social party person for that time as well. :-) I just found out in Jan. 08. I also have cirrhosis. When I found out about this I rushed home to look for my life insurance policies! I felt like my hair was on fire and I needed to make my final arraingments! I understand how he feels about going out on his own terms but he may be jumping the gun on that one. Tx is worth a try, that is what I decided. If his doctors think he is a good candadate for tx then he should take them up on it. As far as the horror stories of tx...that's not always the case. I have tolorated tx very well, as many others do. But he's right, there's no guarantees with the treatment...There is a guarantee without it.
Good Luck to both of you, whatever you decide.
Good Luck to both of you, whatever you decide.
See this link-for Child C stage cirrhosis-which he possibly has the two year survial rate is 35%
http://en.wikipedia.org/wiki/Child-Pugh_score
http://en.wikipedia.org/wiki/Child-Pugh_score
Is there anyway to know at this point how long he has left??? I would love to have some idea.
Thank you for your kind words. I think he is pretty far along I know 12 years ago when it was discoved he had Hep C they wanted him to do the interferon then and he would not, he saw not doctors for those 12 years and then I finally made him go once I saw that he was not feeling so well, cronic nose bleeds, abdominal swelling, fatigue and the such. When he finally went they thought he had liver cancer but a biosey ruled that out. They once again urged him to try the interferon but he just won't do it. Too many horror stories and no guarantee. I will take your advice on seeking some support, if not I think I will go insane.
I can so relate to wanting to live my life on my terms until that time. I suspect if treatment does not go well for me I will think exactly the same way less the drinking. Treating this disease can consume a person if they let it - the quest for a sustained virological response with the current medications offered can become the most important thing in your world if you let it - although it will extend his life if he were to sucessfully treat it's really a personal choice and it sounds like his liver disease is advancing and he may not be a good candidate for treatment anyway.
The unfortunate thing is you have to watch the decline and will ultimately be the caregiver in the end. Even with gentle coaxing or much assertiveness, the decision still lies with him. You may want to seek out support groups in your area to share your experience with others who are going through the same type of thing.
Good luck joshua and I hope you are given the guidance needed to get through this difficult time.
Trinity
The unfortunate thing is you have to watch the decline and will ultimately be the caregiver in the end. Even with gentle coaxing or much assertiveness, the decision still lies with him. You may want to seek out support groups in your area to share your experience with others who are going through the same type of thing.
Good luck joshua and I hope you are given the guidance needed to get through this difficult time.
Trinity
Thank you all for your responses. He has Hep C and most likely has had it for over 30 years. He is not on any meds and will not go to the Dr. They said that he should take the interferon combination but he refuses to do so. I just wish I knew what was going to happen next. He does drink occationally and says that he is not going to stop. He says that if he is going to die he wants to live his life on his terms until that time. I am so fruterated. He is so moody that we argue non stop I am trying to be supportive the best I can. I will try and keep you all updated, I guess I will just take it one day at a time.
Seizures can be caused by high ammonia....(and ammonia can be lowered with a medication called Lactulose).
http://www.neurology.org/cgi/content/abstract/67/12_suppl_4/S28
http://www.neurology.org/cgi/content/abstract/67/12_suppl_4/S28
Did he go see a dr. after the siezure? Does he have HCV. Is he on any kind of meds or special diet?
If he hasn’t already, it sounds like your husband should ask his doctor for a referral to a transplant center for evaluation.
Mood swings and memory problems could be in part due to hepatic encephalopathy; this can be managed to some extent with Lactalose and other drugs to reduce ammonia levels in the blood.
The abdominal swelling in ESLD is often attributable to a condition known as ascities, and can sometimes be controlled with diuretics; and if needed, a procedure known as paracentesis to drain excess fluid.
None of these actions ‘cure’ the patient, but help provide a measure of comfort and safety until transplant can occur. You didn’t say if this condition is a result of viral hepatitis or other reasons such as alcoholic liver disease; either way, if he’s drinking, he needs to stop immediately, and be assessed by a medical professional.
I hope he’s being seen by a qualified and competent hepatologist, and is compliant with any orders issued.
Good luck to both of you—
Bill
Mood swings and memory problems could be in part due to hepatic encephalopathy; this can be managed to some extent with Lactalose and other drugs to reduce ammonia levels in the blood.
The abdominal swelling in ESLD is often attributable to a condition known as ascities, and can sometimes be controlled with diuretics; and if needed, a procedure known as paracentesis to drain excess fluid.
None of these actions ‘cure’ the patient, but help provide a measure of comfort and safety until transplant can occur. You didn’t say if this condition is a result of viral hepatitis or other reasons such as alcoholic liver disease; either way, if he’s drinking, he needs to stop immediately, and be assessed by a medical professional.
I hope he’s being seen by a qualified and competent hepatologist, and is compliant with any orders issued.
Good luck to both of you—
Bill
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