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Posted 9/13/2008 7:45 PM (GMT 0)

Hello everyone,

I'm new here. My name is Mia. My husband Matt has cirrhosis of the liver and hepatitis. We fund out about his liver problem a couple of years ago. His legs started swelling and it would not go away. It took me a moth or to talk him into going to the er. Right way the doctor noticed that he has pivoting. He did some blood work and said his liver was inflamed! They put him on Lasix and told him to go see his doctor. His doctor ran more teat and said his platelets were really low and that he had hepatitis. His platelets were at 45. His legs got better and he quit drinking. Well that did not not last too long. a year later he started drinking again. A few months ago his legs started swelling again. I took him back to the er and they would not do much. She only gave my husband two lasix pills!! She told him to walk it off. I made him a dr appt. and His doctor siad it was not looking good. My husband is a big guy and most of the fluid in his belly is at the bottom and it looks and feels funny. He has bulging veins in his beely the go towards his heart. They are really dark grey. His doctor put him on lasix 80mg and aldactone 25mg 2x daily and Ultram 50mg for the pain.A few days later he broke out in hives real bad on his arms and some on his back. Back to see his doctor. We think it was the pain but he had to stop the pain meds and take two different allergy meds. He did stop drinking thank god. He said for good this time. I asked how bad things are he just said Matt is a sick man and if he has to take him off these meds it would be bad cause this is his only chance to surive. That have not said much else. The iching drives him mad and gives him bad rashes. His depressed because he's not drinking and he's sick. I do have to repeat me self alot. He had a ultasound on his legs and a chest xray. he has to get a echo gram and more blood work. They have not said much about his diseases or his condition. Matt told me the other night that he feels like his body is shutting down which hurt like heck. He's only 40 yrs old. He's in alot  of pain but is acting really brave for me i think. I'm so sad that this happening to him. well that it for now. cry

Posted 9/13/2008 8:15 PM (GMT 0)
Mia, welcome to the forum.  I am truly sorry you are having to see your husband suffer.  You didn't mention the type of hepatitis he has, so I'm assuming it's alcoholic hepatitis, caused by his drinking.  When he went back to drinking after a year, he did the very worst thing he could for his liver.  I am glad that he is currently not drinking, but to "stay stopped" he really needs to go to AA meetings.  If you just take the alcohol away from an alcoholic drinker, you are going to have one miserable human being.  Putting the "plug in the jug" is just the first step.  He has to get to the root of why he drank so much in the first place, and to take steps to change.  AA will give him a plan to do this, as well as support of others going through, or having gone through, the same thing.  I hate to sound like I am "preaching AA," but I've been there and know what I'm talking about.  I just marked 22 years of continuous sobriety, thanks to AA.  I could never have achieved that alone.

Also, your husband needs to see a hepatologist, a specialist in liver disease.  It's good that they are doing further labs, etc., but as sick as your hubby is, I really suggest he see a hepatologist, or at least a gastroenterologist (GI doc.)

I have hep C and cirrhosis, and have had liver cancer.  I'm still here and doing well.  So there is hope for your hubby, too.  He probably needs to lose weight, and especially so if a transplant is possible.  He would need to be alcohol-free for 6 mos. to even be considered for liver transplant.

It's helpful to curtain his sodium and intake of red meat.  Salt retains fluid and the liver has a hard time breaking down red meat.

I'm glad you found us, Mia.  I love your screen name, MamMia.  How clever!

Hugs,

Connie


Posted 9/13/2008 9:04 PM (GMT 0)
Thank you for the welcome. I believe it's hepatitis c? He started drinking around 13 yrs old. Yes i was so mad that i caught him drinking again. But once i knew he stopped sneacking around! He comes from a family of drinkers!! But now that everyone knows how sick he they don't sneak him beer anymore. When we go to the store and pass the beer he stops and stares for awhile. I will ask him about AA. He's doctor has not said anything about going to a hepatologist or a gastroenterolist? He's has cut salt out of his diet which his hard on him. He use to put salt in his beer!! But he's getting use to it.    
Posted 9/13/2008 9:16 PM (GMT 0)
Hello Mia, and welcome to HealingWell. Connie is absolutely right about your husband should be seeing a GI or better yet a Hepatologist. Tell his doctor you want him to be referred. General Practictioners don't know enough about the liver diseases to treat him effectively. There's a lot more to it then the water retention that he is being treated for. Don't be afraid to demand a referral if you have to. Your husband has a right to good health care whether or not he was a drinker. Some docs don't want to go the extra mile if they think "he brought it on his self."

So get educated. Once the doctor knows that you have taken the time to find out about the disease and it's treatments he will be more willing to get your husband the proper medical treatment.

Good luck........thoughts and prayers..........
Posted 9/14/2008 3:52 AM (GMT 0)

Mia,

Welcome to the forum!! My husband has hep c and cirrhosis of the liver. He was diagnosed 4 years ago, and is also an alcoholic....sober for 2 years and 3 months now, and he would not have made it had it not been for his AA group.  Connie is absolutely right....the most important thing here is that he needs to quit drinking...he needs to go to AA, and it would probably help for you to go to alanon.....now for the liver stuff. He really does need to see a GI (gastrointerologist) or a hepatolgy (liver specialist) doctor. There is treatment for the hepatitis c, but he cannot drink with this medication. Also, you had mentioned that he breaks out in a rash....if the rash is on his skin and is very painful....could be a condition called vasculitis, which some patients with Hep C can get...it's a side effect (complication) of the Hep C. My husband has had issues with vasculitis and is currently undergoing a chemo infusion for it because the steroid medication he has been on is causing him too many problems. My husband was accepted into the transplant program this last spring. I know this is very difficult for you to watch happen, but you are going to need to arm yourself with information and also be his healthcare advocate, because he is not going to remember alot. This is also one of the issues with liver disease.....mental confusion, memory loss, etc.....make sure you have his doctor put him on lactulose...that will help his ammonia level go down , which will in turn help with the mental confusion issues. And, as Connie mentioned, you need to limit the sodium intake and red meat...the low sodium will help with the fluid rentention and the liver has a hard time breaking down red meat.  I know this is all very overrwhelming with you.....but hang in there....we are all here behind you. Hang in there, and keep you chin up!!!

Mary (mer)

Posted 9/14/2008 4:22 AM (GMT 0)

Mia, thanks for giving the exact type of hepatitis he has.  I also have hep C.  Your husband DEFINITELY needs to see a GI doc or hepatologist.  A family physician is not knowledgeable enough to be able to manage this disease.  A hepatologist would be able to tell whether your husband might be eligible for hep C treatment, or if his disease has progressed to the point where he will soon need a transplant.

He does not need to cut out salt entirely.  That's about impossible to do, anyway.  However, he should not add salt to food on his plate and you should not put it in cooking water.  In addition, most canned and frozen dinners are high in sodium, so it's better to use fresh if at all possible.  Read labels.  You can try using Mrs. Dash or lemon juice in place of salt.

Mer's suggestions are "right on."

Hugs,

Connie

Posted 9/14/2008 7:42 PM (GMT 0)
mer, you said something about his ammonia levels? I have his blood work and i dont see that on there. could it be under another name?
Posted 9/14/2008 9:13 PM (GMT 0)
Mia

Just wanted to welcome you to the forum. I am so glad that your husband has currently stopped drinking. Please take the advice of getting him referred to a good GI doc that is experienced in liver disease or a hepatolgist if possible. Liver disease can be so unpredicatable that he should be seen by someone that specializes in those disorders.

Good Luck to you and your family.

Lucy
Posted 9/14/2008 9:44 PM (GMT 0)
Hi Mia, Welcome to the forum. Everyone has given you great advice. Regarding your question about ammonia levels, I don't think they normally include that on the labs for the liver panel. I think that at first it is determined by the symptoms they are presenting with. My husband has cirrhosis and hep C. He was diagnosed with hep C in 1994 and cirrhosis in 2006. He stopped drinking after the diagnosis of cirrhosis. He had frequent bouts of encephalopathy which we have pretty much under control with lactulose. The doctor never ordered a test for his ammonia levels but prescribed the lactulose when I told them how he was acting. They do test for ammonia levels, but I'm not sure at what point. I am sorry that you have to watch your husband go through this. It is such a terrible, heartbreaking disease. I am so glad that you found us. This is a great place to come for support. Everyone here is very understanding and knowledgable. If it weren't for them, I don't know what I would have done.

You will be in my prayers.
Posted 9/15/2008 12:27 AM (GMT 0)
Thank you everyone for a great welcome and advice. It has been hard to keep my feeling to my self. Matt goes back to the doctor at the end of the month. Matt and i are planning to get more answers this time around. We will be asking about those special doctors also. But it helps to share my feeling with other s who know what Matt and i are going though. Iam thankful for this forum!!  
Posted 9/15/2008 1:02 AM (GMT 0)

Mia, I've never had my amonia tested as I've never had symptoms of encephalopathy to warrant it.  When you next go to the doctor with your husband, be sure to mention the symptoms he has.  Ask if they could be caused by high amonia.  The doc may then have him tested for it.

Hang in there!

Hugs,

Connie

Posted 9/15/2008 1:17 AM (GMT 0)
Mia,

That is correct...they usually don't automatically check the ammonia level unless they have reason to do so. I have specifically asked them from time to time to check the ammonia level, and you are within your rights to do so. It may be a good idea for a while to start going to doctors visits with your husband...that way you can act as an advocate on his behalf. Also, when the do check ammonia, make sure they put the blood on ice....wee have had false readings because it was not kept on ice and done correctly. basically, the ammonia in the blood can increase with liver disease and is usually the contributing factor to the confusion, etc. That is what the lactulose will help. However, I just had a hepatologist explain to me that ammonia level readings do not necessarily mean that he will be confused if it's slightly higher. Basically, ammonia affects each person differntly...some people can high ammonia levels and it does not make them confused, and others it can make them verry loopy and crazy. I know I am probably making things more confusing here.....and I am sorry about that. Just wanted to arm you with information. I will be praying that you guys get some answers and/or some direction at this visit at the end of the month.

Hang in there...big hugs!

Mer
Posted 9/16/2008 2:57 AM (GMT 0)
Hi Mer, I just wanted to say I don't think you were making things more confusing at all. I am thankful for the info you gave on ammonia levels. It makes since that it is not clear cut. Everything about this disease is confusing.

Thanks again.
Posted 9/16/2008 3:20 AM (GMT 0)
I agree....there is nothing "normal" or clear cut about this disease. I take my hubby back to the hepatologist this week, and they will be doing labs and MELD score, possibly re-listing him on the transplant list. I manage to stay somewhat level headed about all this, but when it comes to things like my refrigerrator breaking down on me today, I completely fall apart....guess that's how I am dealing with the stress of all this, huh?? Thank you....
Posted 9/16/2008 4:07 AM (GMT 0)

Mer, that's understandable!  You're under enough stress and things like a broken fridge can be the final straw.  Are you getting enough sleep or doing anything to relax?  Remember that it's important to take care of yourself.

Hugs,

Connie

Posted 9/17/2008 1:37 AM (GMT 0)
hi Mia, and well to the forum I am so sorry to hear about your husband, this is a great place and the people are good listeners (a family with the same issues). I agree with everyone you need to arm yourself with all the information out there about cirrohis and hep C and get your husband to a GI doctor. Ask,ask,ask questions until you get the answer you are looking for, go with your husband to every appointment when possible that way you know what is going on and not just knowing what your husband tells you. I just recently lost my husband to this horrible disease. All you can do is spend every minute of everyday with your husband and family. Stay strong and take care of yourself for you are his caregiver.

Hugs and Prayers............Cely
Posted 9/18/2008 11:28 PM (GMT 0)
Matts doctor just called about the lab work he just had done. He said Matts ammonia level is at 225 an it should be at 95. He is calling a prescript ion for it. He did not say what meds they were though. So now iam worried. Matt had really bad pain in his belly last night. I wanted to take him in but he refused! He blamed it on the food. I wanted Thank you Cely for your kind words and know that iam sorry to hear about your husbands passing. My thoughts and prayers go out to you. So all i can do now is wait till his appt to find out more info. It's the waiting that bothers me. Well till next time.  
Posted 9/19/2008 2:31 AM (GMT 0)

Mia, they usually give Lactulose for high amonia levels.  From what I gather, it's not very pleasant but it works.  Is he on a diuretic?

Hugs,

Connie

Posted 9/19/2008 3:42 AM (GMT 0)
Mia,

Connie is absolutely right.....Lactulose is what they give for elevated Ammonia....makes them poop alot, but that's what moves it out of the system...gotta keep the bowels moving. Ammonia leval is normally in the range of 10 to 32, I believe. 95 is till too high. With the ammonia being 225, would like to suggest a couple of things....if he has been extremely confused, slurred speech, irratic behavior, then that would make sense. However, if he's not ACTING like his ammonia is that high (which that is pretty high), I would make sure the labs ran the blood work correctly. When the draw the blood, they need to keep it on ice until they run the test...otherwise you are not going to get a good reading. We have had false readings a couple of times where the doc's office called and said it was in the high 300's and 401!!!Put me in a complete panic, took him to the ER to find that while it was elevated, it was not THAT high!! At any rate, have them re-check....make sure they ice it and the lactulose is a good thing to have on hand all the time, anyway. We get it by the 1/2 gallon jug- LOL!! This is kind of a gross subject, but our liver specialist has said that they should be pooping 3-4 times a day to keep that ammonia moving out of their body......hope this helps. You hang in there tomorrow and go with him, too!!

Hugs,

Mary (mer)
Posted 9/19/2008 5:06 AM (GMT 0)
I picked up his meds. Yes it was Lactulose. 30 ml twice a day. I don't know if they put his blood on ice or not. Will he always have to drink this stuff? Sometimes i have to repeat things to him, and still he does not always get what i am talking about . He gets angry a lot these days. He never use to be like that. This has been going on, i think about a year now. I think the Lasix and aldactone stopped working. He does not seem to be losing anymore fluid. His legs and stomach seem to have gotten a little bigger. I have hope things will turn around for him. He sleeps so much. Only up three hours in the morning then sleep all day till dinner. Then hour or two later he's sleeping again. But he walks up a lot in the middle of the night. That's when he seems to have a lot of pain. Well until next time. Hope everyone is doing well. Good night!  
Posted 9/19/2008 7:37 PM (GMT 0)

Mia, again I suggest a referral to a hepatologist (liver specialist.)  Is your husband still staying away from alcohol?  If so, I think it's time to pursue a liver transplant.  It is a long evaluation and testing process just to get listed.  Therefore, I think it's important that you get a specialist's opinion and see about getting him evaluated for transplant.  Once on Lactulose, liver patients seem to stay on it until they get a transplant, though the dosage can be adjusted.  You need to push for that referral (if your insurance requires one.)

Hugs,

Connie

Posted 9/20/2008 2:20 AM (GMT 0)
Mia,

Been thinking about you today......I agree with Connie....you need to get a referral to a transplant center for evaluation. Depending on where you are, and what transplant center you use, they can sometimes do all the testing on an outpatient basis over the course of about a week. We did that, and while is was a long week, we got it done and got a decision within a few weeks, it seems. Alot of times with the encephalopathy, they do get their days & nights mixed up...especially when they are in a confused state. With regard to the Lactulose...unfortunately, he will probably be taking it until he gets transplanted. However, we do increas and decrease the doseage based on how his confusion is, and how much he's pooping. (there i go with the pooping stuff again). Our liver specialist has had me increase his dose up to 3-4 TBSP 3 times a day if he's extremely confused. But my hubby now takes 2 tbsp two times a day and he seems to do pretty well with that. You definitely need to find a hepatologist in your area that you can treat with. Our hepatologist is actually on the transplant team, and it has made all the difference in the world. Hang in there!!!
Posted 9/25/2008 3:53 AM (GMT 0)
Mia,

Just wanted to check in on you and see how things were going?? Is the Lactulose helping yet?? Still some confusion, etc??? I am thinking that once that ammonia level gets under control, you will see a difference. Wanted to check and see how you were.....post back when you can.....

Mary
Posted 9/26/2008 7:44 AM (GMT 0)
Matt had a great day yesterday! He said he had engery which was great. Matt was more like his old self. We got a lot of things done. He seems to be a bit confused at times. Today i was sick and we spent 4 hours in the er. They gave me some pills and Matt had to drive. He does not drive to much over the past year. Well I drive a 5 speed and he was having trouble. I keep asking if he wanted me to drive and that made him in a bad mood all day long. Plus he missed his morning dose of his Lactulose. I was not thinking clear and i really try not to say things about him not undersatnding something or when he just is having trouble! I pray for a better tomorrow! Good night and take care.  
Posted 9/26/2008 1:44 PM (GMT 0)
Mia, It is great to hear that Matt had a good day. It sounds like the lactulose may be working. I am sorry to hear that you are sick. Caring for someone with this disease can take alot out of a person. I hope you are feeling better today.

Take care.
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