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Posted 1/12/2010 5:12 AM (GMT 0)
sad I am new and not quite sure how this works.  I'll start by telling our story and what we know. 

     My fiance' was diagnosed in June 2009 with hepatitis c and end stage cirrhosis of the liver.  He has had 3 episodes of total confusion and combativeness being hospitalized once for that.  Has had to have fluid drained off his stomach a total of 7 times since being diagnosed.  We have 4 children between us.  He has 2 from previous marriage, I have 1 from previous and we have a 5 month old together.  I have been tested for hep c and was negative.  I am worried about how long he may have left as the doctors have not said.  All his doctors will say is it isn't good.  What does this mean exactly, 6 months, a year, 5 years? I don't know where to turn or what to do.  All I do is make sure he is comfortable and make sure he stays on his medication.  I'm afraid to plan anything.  Is there anything else I can do besides pray? I do so much of that.

Posted 1/12/2010 5:51 PM (GMT 0)
tnspirit, Rick couldnt have said it better, my sweetie was given 48hrs in 2000 and we continued to have 9 more YEARS that I wouldnt trade for the world! We loved deeply, we cried but we sure laughed alot more than cried. Life is never a promise of forever its today that counts. they say dont go to bed mad always kiss your loved ones goodnight and you will ahve no regrets.
Sue
Posted 1/12/2010 9:41 PM (GMT 0)

Tnspirit, welcome to the forum.  As you can see, you are not alone.  I was diagnosed with hep C in '93, liver cancer in '05, and cirrhosis in '07--and I'm still here.  Has your fiance been given the option of hep C treatment?  How about transplant?  When the liver doesn't function properly, ammonia can build up in the brain and cause confusion and combativeness that you described.  Usually, the patient is put on Lactulose for this.  TIPS surgery may be an alternative to all the drainings.  I suggest you read some of the older posts, and also the info in the Hepatitis Resources folder at the top of the page.  You will gather a lot of information that way, and the people here are very supportive.

Hugs,

Connie

Posted 1/13/2010 5:42 AM (GMT 0)
Hi Tnspirit and welcome to HealingWell. Sorry that your husband has this disease.......but your doing the right thing.......getting educated. You have to know your enemy in order to win the battle.

Is he being seen by a hepatologist? If not try and get him referred to one.
With his condition it is very hard to make plans.......except for appointments and stuff. Life revolves around it until you get it under control somewhat.

As Connie said please check out our educational thread in our resource post.

Again welcome......take care.......thoughts and prayers.......
Posted 1/13/2010 6:19 AM (GMT 0)
Thank you all for your information and support. I have went to just about every site online reading about hep c and cirrohsis since he was diagnosed. He has seen a hepatologist and he said that Mike wasn't a good candidate for the treatment. His other doctors have mentioned a liver transplant but said that he may never receive one because the wait is so long. He was put on Lactulose about 2 months ago after he was taken (had to sneak to call ambulance) to the hospital with encephalopathy. He had episodes like that a few times before threatening me not to call an ambulance but thank heavens I managed to get him to bed and for some reason he slept it off. I don't understand how and neither did the dr. We take one day at a time which is all we can do. Our children know he is sick and has hep c but I don't think they with the exception of my daughter that they understand. She is such a huge help around the house and with the baby as I myself am disabled and have problems sometimes getting around. Thank you again for the kind words. Please all of you take care and smile a little each day. I do think it helps a little.
Posted 1/13/2010 8:03 PM (GMT 0)

Tnspirit, I would not accept the opinion about a transplant.  If you are in TN, try contacting Vanderbilt.  It is not until he has been evaluated for transplant at a transplant center that you will know where he really stands.  Do you know if he had been drinking at all prior to those episodes of "encephalopathy?"  Also, I would not accept one doctor's opinion about hep C treatment.  There is also a new treatment in trials now that should be widely available within a year.

Mayo has the shortest wait time in the nation for transplant.  At one time, it was 2 1/2 mos., but it may be a little longer now since word got out about it and Mayo Jacksonville now has its own hospital (I am seen at the Transplant Center there, though never a transplant candidate--that's where the hepatologists are.)  If he's able to travel, you might also try there.

Don't be so quick to give up!

Hugs,

Connie

Posted 1/14/2010 2:51 AM (GMT 0)
thanks for the added advise Rick and Connie, mike and I have been together for 7 years now. I have never seen him drink and to my knowledge he hasn't drank any alcohol in about 28 years. He says he used to drink about a gallon of Jack Daniels within 4 days every week before he decided to quit and that he was seen by a dr then that told him that if he didn't quit he would not have a liver left because the damage was already starting. He did quit thank god. He says anyone can if they want to bad enough and I believe that is true. I believe that if anyone wants to quit drinking or drugs then they can, it just takes the willpower to say "no". No treatment or program is going to work unless the person really wants to quit. But that's another subject entirely.

We have also found out he is diabetic on top of everything else. That problem atleast I know how to help him with as I am too. I'm just not sure he can handle it if they find much more wrong with him. He says he is almost afraid to go back to the dr because they find something new about every time. I keep making him go though, after all I tell him he wants to see the kids grow up and the sooner they find out then the sooner they can treat it. He gives in and goes.

Again thank all of you for your help and support. My prayers are with all of you.
Posted 1/14/2010 2:56 AM (GMT 0)

Tnspirit, I'm glad that Mike stopped drinking so long ago.  He was one of the rare ones who listened.  I only asked that question to determine if his encephalopathy might have been the result of drinking with a damaged liver.  Glad we can rule that out!  It's very important that he continue follow-up with his doctors.  I'm glad you are there for him and to see that he keeps his appts.

Hugs,

Connie

Posted 1/18/2010 3:55 AM (GMT 0)
Hi everyone, I thank you all for your replies but I have a couple of questions that I am not sure have to do with Mike's hep c and cirrohsis or not. He has been sleeping alot, I'm not sure if it is his medication or not. He complains constantly that he is so cold even though the rest of us are not. He seems like he has no energy at all. I talked to the dr about it and he said that he had depression and prescribed zoloft. This seems to have made it worse about sleeping all the time. He lays on the couch sleeping from the time he gets up til he finally wakes up to go to bed. The only time he gets up is to go to the bathroom or get something to eat or drink. I can get him to go some places with me if I am not going to be gone for a long time but soon as we get back it is right back to the couch. Tell me, what could be the problem? Is it depression or his medication?

thanks again to all. Joyce
Posted 1/18/2010 4:19 AM (GMT 0)

The most common symptom of liver disease is fatigue.  It is a very odd sort of body tiredness and it doesn't matter how much sleep you get, you are still tired.  This was what led me to a diagnosis of hep C in '93.  It is still my worst symptom.  I average 12 hours of sleep a night, getting up several times during the night to go to the bathroom.  So I think the fatigue and sleeping that Mike was experiencing was due to his liver disease.  The medication has made it worse.  The only antidepressant that I ever took that didn't cause weight gain and deep sleep was bupropion (Wellbutrin.)  Which doctor put Mike on Zoloft?  Anyone with a chronic illness can be affected by depression to some extent, but it doesn't always require medication.  I would speak to his hepatologist about this, or have him do so.

Hugs,

Connie

 

Posted 1/18/2010 5:35 AM (GMT 0)
Hi Joyce, Connie is absolutely correct. Fatigue is one of liver disease's symptoms. Also the coldness is too. I believe they are always cold because their body temp is lower than normal. And their blood is thinner also. My husband would lay out in the sun in 90+ degree weather, wrapped up in a quilt. He couldn't get warm enough.

Have you got a chance to read our educational thread in the resource thread yet? It has lot's of good information in it.

Hang in there.........thoughts and prayers...........
Posted 1/18/2010 7:56 PM (GMT 0)

tnspirit  If you are in Tn my husband has his transplant at Vanderbilt.  I know they run a really tight ship but their list is small.  When Jerry got his transplant there were 130 people on the list.  A lot of them with low MELD scores.  It took him 17 months while he was on the list to get his liver.   A lot of other transplant centers have shorter wait list and a lot have longer.  Vanderbilt transplants in the mid 20's while others wait until their score is in the mid 30's.  You have to be referred to Vanderbilt by another Dr.  I would just keep seeing Dr. until one referred me.  I just don't understand that.  We were referred by our Gastro Dr.  Hang in there and stay on this forum it will help so much.

JoAnn

Posted 1/19/2010 2:56 PM (GMT 0)
tnspirit, I'm also always cold when everyone else say's it's me. I where thermals under my clothes and at times I also where a sweater. It's a common complaint with us having L. D. and/or  hep c. Another symptom is being tired, I'm always tired. The Dr. told me to listen to my body and sleep when I need to, rest is very important as is diet and exercise.

The hospital I go to in Pa. are now transplanting with a meld score in the 20's. You use to need a meld score in the 30's. They just started this maybe 6 mo. or so ago.

As for anti depressants, most of the meds. can make you tired so he may be getting a double whammy. Connie suggested to talk to the hepatologist,(she is a smart lady) I would follow her advice.

 

Take care,

Dee Dee

Posted 1/21/2010 2:56 AM (GMT 0)
Update: Mike went in the hospital last night and they got 43 liters of fluid from his stomach this morning. He went from 235 lbs to 177 lbs in a matter of hours. They let him come home this evening. He says he feels better as I am sure he does. Thanks for all your advice and everything. Our prayers are with you all.


Joyce
Posted 1/21/2010 3:00 AM (GMT 0)

Wow!  That was a lot of fluid.  I'm sure the poor man was very uncomfortable and feels much better now. 

Thanks for keeping us updated.  Hang in there!

Hugs,

Connie

Posted 1/21/2010 3:18 AM (GMT 0)
tnspirit  I have never heard of that much fluid drained at one time.  That is a lot of volume at once.  Watch his blood pressure.  Don't be surprised if he gets muscle cramps.  Hang in there.

JoAnn

Posted 1/26/2010 4:25 AM (GMT 0)
We are JoAnn and thanks for your concerns. I thought he was joking when he told me how much they got too but I ask the dr and he confirmed it. I am surprised at how much they got but he had been putting it off for over a month and finally got to where he could hardly breath and went. He's been sick to his stomach alot since they drained it. I wonder if it has anything to do with it.


Our prayers are with you all, Joyce
Posted 2/26/2010 5:49 AM (GMT 0)
Hi everyone, sorry I haven't posted any updates lately I have been so busy with Mike and the kids I haven't had a chance to get online. Last thursday Mike had an appointment with one of his drs. for his hep-c. he wanted an ultrasound b4 he saw him. We barely got through the ultrasound because Mike had got up that morning not quite acting right. His speech was slurred and his balance was way off. I have come to the conclusion that it was the encephalopathy again. He absolutely refused to go to the hosp. He did fairly ok on the hour trip down there. After we arrived he seemed to get worse, having an accident while he was on the table for the ultrasound and didn't even know it. We had to wait around for his appointment with the dr so I went and bought him another pair of pants and underwear to change into. He didn't seem to me like he was doing any better so I called the dr and told them what was going on and rescheduled the appointment. I brought him home with him pushing imaginary buttons on the dash between naps. He woke up right b4 we got home and wanted a soda so I stopped at a store not far from our house and got him one. When I got back in the van he decided it was time to argue because he wanted to go get a movie but I just wanted to get him home, cleaned up and try to talk him into going to the hosp. I won the arguement about going home and cleaning up but the hospital was still out of the question. I know from past experience that as long as an individual can tell the ambulance personell what year it is and where they are then they figure they are well enough to refuse to go. So it would have done me no good to call an ambulance for him anyway or take him to the hospital. The dr called after he got the ultrasound results and now wants to see him asap. He wouldn't say as to why. We are worried that he found something bad. His new appt is for March 4, next week. Today is thursday, one week later and he is still in and out. Still refusing to go to the hospital. At times he seems to be ok but then after he is up for a couple hours he seems to go downhill. His speech starts to slur, he loses his balance so I make him lay down on the couch and take a nap. After the nap he seems ok again. If anyone has any advise on what else I can do then please let me know. thanks alot to everyone that has helped. Our prayers are with you all.

Joyce
Posted 2/26/2010 1:46 PM (GMT 0)

Joyce  I can relate to what you are going through.  I don't even remember how many times this happened to Jerry.  I do remember one time that I went 3 nights with no sleep because he was like that.  And yes, I did the ambulance thing and called the police to try and talk him in to going.  When that ammonia gets high they get really stubborn.  Sometimes when he was like that I could get the ammonia down with more lactalose but a lot of the time an infection or dehydration would cause his amonia to spike.  A few times I got him to the Dr. by telling him the Dr. just wants him looked at in the ER.  That worked a lot.  I just took told him they just need to check him out then we could come home.  You might try that but I think he needs to be seen ASAP.  Hang in there I can tell you after Transplant things are sooooo much better.

JoAnn

JoAnn

Posted 2/26/2010 2:08 PM (GMT 0)
ammonia can do some really tricky things. if you were in the car you should have just drove him to the er. i really hope it is not bad news t he doctor has but i would go prepared. is he on lactulose or spironaldactone. even if he isnt a good candite for the medicine these will help him
Posted 2/26/2010 7:13 PM (GMT 0)

Joyce, thank you for the update.  I am sorry that Mike continues to deteriorate.  Is he on Lactulose for the encephalopathy?  My liver cancer was discovered when I had a sonogram, so prepare yourself for possible bad news.  There are treatments available, though, depending on the situation.

Don't hesitate to take Mike to the ER if he gets worse.  I am wondering if his diabetes is playing into this?

Please keep us posted.  Our prayers are with you and Mike.

Hugs,

Connie

Posted 2/27/2010 12:03 AM (GMT 0)
Joyce, If you are able to get your husband into the transplant program, do so immediately! MELD scores aren't the sole criteria. Because my blood type is B+, and I was also (the surgeon said this when he called me) the right size. I'm 5 feet, 9 inches and weighed 150 at the time. It moved me ahead of two people in front of me. The transplant was from someone more my size. Had I been a larger person, I'd have had to wait. My MELD score was 24, which is on the low side at Mass General. Blood type had a lot to do with it. Good luck. **David**
Posted 2/27/2010 5:33 AM (GMT 0)
Hello all, yes Mike is on spironolactone and lactulose. I got to thinking today that he was eating alot of bananas b4 this came on and I am wondering if his potassium isn't up too. I know your potassium being too high will make u do this too. He still refuses to go to the er. He says he will go after his appointment the 4th. And yes I had him in the van and could have went straight to the er but that still wouldn't do any good because when he told them he didn't want to be seen then they wouldn't have. Don't ask me but that is the way the hospital here is. When my mom was ill and I was taking care of her before she died (she had emphazema and congestive heart failure is just a few of the things that was wrong with her) I took her to the er one time and they wouldn't treat her because she said no. I begged them to do something to help her but since she was able to tell them what year it was and where she was they wouldn't. I had to laugh today with him because he caught himself telling someone (noone was there) that they better step back off him. It was like as soon as he said it he came to himself. Sound strange? it was. Right after he said it he looked at me and ask who was I talking to? I told him I had no idea and he just shook his head and started kinda laughing. He seemed fine for a couple hours after that. Is this normal?? I mean for it to make them like that? Usually when his encephalopathy acts up he is arguementative and combattive, his speech gets slurred, he does things that arent normal for him and stuff like that but this time he isn't wanting to argue or fight. He is actually very meek acting. Is this normal or could it be something else? I thank all of you for letting me get on here and talk to someone, I really don't have that around home. It's hard to talk to people when all there is is kids around you all the time. Everyone take care of yourselves and you are in our prayers.


Joyce
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