First time.. i guess it's time to talk about it.

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Carlismineforever
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/11/2009 2:44 PM (GMT -7)   
Well hello everyone,
 
My husband was diagoned with cirrohisis/hep C in 2002... after a regular checkup..
to my surprize i was only 24 and not really sure what it meant..it's been a long time since i am able to talk about with anyone..Carl tells me I am denial.. it's that so much is happing and i am not sure what to  do to make him feel better...he is taking so much med,he is changing.. and i am not sure whether it's from his cirrohsis, hep c or his bi polar... I guess from the denial point of view... i kind of turn away.. we have 4 kids from 17 to 7 years old.. i work full time.. and he stays at home with the kids..He's a grea father.. wakes up with them in the morning breakfast.. laundry, dinner..sets them off to school.
 
to come and understand i don't think  i know what stage he is in..he says he's in stage 4.. but he is still able to do things.. he takes naps when he can... he bearly sleeps at night...he has spider viens all over his body.. frequent headaches,.he did have a blow out in 05.. espohgal varies and was banded a few times,he's belly is big. but was told it was from the icecream everynight. he's legs swell at times... sometimes he gags when he brushes his teeth, he's about 6 feet tall and weighs about 235. but he also  has bipolar manic depression and take alot of meds for that as well..he does not go out as much.. because he gets tired .. he also has muscle wasting.. i feel so bad.. i wish there was something i can do..  i take him to the doctors, take him to get his tests done.. but i don't understand any of it.... he constantly tells me he wont survive couple years.. and it's really depressing and he wont get a liver.. becuase he won't survive the transplant and that they wont give it to him becuase of his past... he used to use drugs really bad...he has been clean for about 7 years...sincee our daughter was born.. he currently smokes still about 8-10 ciggs. a day and insist in have 2 beers a day... i will tell him to an agrueing point to stop.. but he says that's all he has left...if he stops he'll die miserably....WHEW.. i let it all out....it just a lot.. i an not sure what to do.. last week we went to the er..he was feeling really weak and they told us his ammonia levels was 120 and to start taking lactose 3 times a day... what does that mean...??? thank you all for letting me vent...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/11/2009 6:05 PM (GMT -7)   

Carlismineforever, I'm so glad you decided to post.  Welcome to the forum.  I'm very sorry that you, your husband and family are having to deal with his liver disease.  I do want to clear up one thing:  Your husband would not be denied a transplant due to prior drug use, if it has been that long ago.  Undoubtedly, that's how he contracted the hep C.  I did, too, in the same manner.  What would prevent him from being considered for a transplant is his drinking of 2 beers a day.  If that is all he is drinking, it should be easy for him to quit.  He may feel that's all he has left, but those 2 beers a day are speeding up the damage to his liver.  He already has cirrhosis, so it's like throwing fuel on a fire.  He is making it worse.  He would need to be alcohol free for 6 mos. and have it documented by participating in alcohol counseling or going to AA meetings, before he would be evaluated for liver transplant.  Has he been told that he would not survive a transplant, or is that just what he is telling you?  Stage 4 generally means cirrhosis.

First of all, you need to get educated about liver disease.  If you'll go to the first topic on the page, Hepatitis Resources, you will find a lot of educational information in there.  The addition of Lactulose to your husband's meds is to lower his ammonia level.  Damaged livers cannot process certain chemicals and they become toxic.  In the case of ammonia, it will build up in his brain, causing personality changes and even coma.  You need to make sure that he is taking the Lactulose as prescribed.  It will cause him to have several bowel movements a day, which is how the ammonia will be excreted.

Is he being seen by a hepatologist or at a transplant center?  It seems he has taken a fatalistic view of his disease and is not willing to do things that will slow down the process.  He should refrain from eating beef as the liver finds it very hard to process.  He can eat chicken and fish, beans, cheese, etc., for protein.  He should eat a lot of fresh fruits and veggies.  He CAN help himself feel better, but it will take changing a few things, including giving up alcohol altogether.  The main symptom of hep C is fatigue.  However, it can lead to cirrhosis and complications of that, as well as liver cancer.  Has he ever had hep C treatment?

The esophageal varices and big belly are very common in End Stage Liver Disease.

Read some of the older posts here and you will gain a lot of information.  Ask questions about anything you don't understand and some of us will try to answer.

Again, welcome!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/11/2009 6:53 PM (GMT -7)   

Your husband needs to go on the liver transplant list,or doesnt he want to? Do you go with him to his DR. appointments? If you dont or havent in awhile maybe you should,maybe he is confused or just in denial.

Good luck....my thoughts and prayers are with you,

DeeDee


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/11/2009 8:26 PM (GMT -7)   
DeeDee, he would not even be evaluated for placement on the list unless he stops drinking.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/11/2009 9:42 PM (GMT -7)   

Connie,

You are right about him having to stop drinking. If its only 2 beers a day ,he can and should stop. Thats why I was wondering if he is confused or just doesnt want to be on the list. Does he have other medical problems that might make him ineligable for transplant? and thats why he continues to drink,even though the 2 beers a day are damaging his liver quicker. The more we know the more we may be able to help her with her questions. I wish her and him the best and they are in my prayers,as you are Connie. How are you feeling?

DeeDee

 


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 9/12/2009 8:12 AM (GMT -7)   
if he says he cant stop drinking his two beers he has a problem. he may not get drunk but he is dependent on them beers. he also may be in denial or given up. he needs to see that he has something worth fighting for. i would go to his doctor appointment with him and explain the situation to his doctor and see what that accomplishes. maybe he is depressed and they can do something about that.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/12/2009 1:08 PM (GMT -7)   
Welcome carlismineforever to HealingWell. So sorry that you and your family are dealing with this disease. It's not fun at all.

With him being diagnosed with Hep C only since 2002 that doesn't seem like it was long enough for it to be the only cause of his liver disease progressing so fast. Or he may have had Hep C for quite sometime before the diagnosis. Some people have lived with Hep C for 30 years. Is he under a Hepatologist's care? If not he needs to be seen by one.........and take all his meds with you to the appointment...........as it maybe one of his bipolar meds may not be good for his liver. But the rest of him are right as rain.........even 2 beers a day is continuing to do damage.

Take care..........thoughts and prayers...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/12/2009 1:32 PM (GMT -7)   

DeeDee, I am feeling wiped out still from the surgery, but otherwise okay.  Hope you are doing well.

Hugs,

C.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Carlismineforever
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/12/2009 3:08 PM (GMT -7)   
Hello Everyone,

Thank you so much for the inforamation you all have given me.. he has been clean from drugs for about 7 years didnt drink either. just until about 2 years ago.. when we lost our house. he says 2 beers just gives him something to do.. i tell him all the time it's no good.. i think because of his depression.. he has given up... and feels like he does not have any hope... I go with him to see the doctor all the time... our last visit.. with the doctoer said his meld score was 9.. previously in june we went to the tampa liver transplant place and they told us... we are not in a transplant mode as of yet..i guess it's not that he can't get one.. i feel like he dosent think he should get one....again he's depressed.. he has manic bipolar depression....
over all he's been put on some meds lately.. to help him with his depression but i am not sure if' its okay to take becuase of his liver.. risperdol,neorontin,lithuim,ambien,adavan... along with is water pill, and prylosac and lactulose..i just don't know what to tell him...to make him stop.i tell him that it is making it worse but he wont listen .. Carl is a great father and husband. just dont' know what to do to make him relize what he is doing..

didnt know beef was bad for him?..you know his ankles,have been swelling up lately does anyone know what it can be from..? he doesnt walk much.. he doenst leave the house. because he can't drive so when i am at work he stays home

also.. was wondering.... so stage 4 is cirrohsis.. now.. are there other stages from that.. .. i remember they said he had decompensated cirrohosis what does that mean?

i didnt know how wonderful i feel that i can express myself finally to people who knows and understand..cirrohsis ...and know what i am going through thank you so much....

carlismineforever xoxox

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/12/2009 3:28 PM (GMT -7)   

Decompensated cirrhosis means that his liver is not functioning correctly.  That is also what is causing the ankle swelling.  The "water pill" (diuretic, probably Lasix) should eliminate the fluid build-up.  He should also curtail his intake of salt.  Don't cook with it and don't add it to foods.  Get salt substitute instead, or use lemon (which tastes salty) on veggies.  Avoid canned foods, which are loaded with salt.  He should also elevate his feet.  Walking will help, too, as long as he doesn't overdo it.

Please do read the educational posts in Hepatitis Resources.  You can get all your questions answered by reading that.  Also, with a MELD score of 9, he is not bad enough to place on the transplant list yet.  They usually wait until a patient's MELD is in the mid to high 20s or higher.

If he is not willing to stop drinking, there's really nothing you can do.  He just needs to be aware that he is speeding up liver failure by drinking.  Also, doctors do not look too kindly on a patient with liver disease who continues to drink.  They can do their part, but the patient also needs to hold up his end; otherwise, whatever efforts they make mean nothing.

Here's hoping he comes to his senses.  Has he applied for SSD?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Carlismineforever
New Member


Date Joined Sep 2009
Total Posts : 4
   Posted 9/12/2009 4:29 PM (GMT -7)   
Hello Connie,,,

Thanks for the info.. yes he has ssd.. does no like that fact he can't work any more... but he deals with it..... i am at work just got a call from him his ankles are swelling and tingling....told him to put his legs up....my husband is so stubburn at times no matter what i say.. he doesnt do it.....


fights with me.. about anything that's good or bad for him...tell to stop drinking, no beef lower insalt ..nothing..
it's very frustrating at times.. but i try to understand...

deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/12/2009 4:39 PM (GMT -7)   

I think you should talk to the DR. about the meds hes on,the risperdal is given in low doses can be used for sleep problems,as ambien is, neurontin is used for seizures and neuropahty pain,atavan is for anxiety,lithium and risperdol are mood stablizers and for depression, Some of these meds combined can make him more depressed and the beer on top of it will make it worse not to mention intenseify the affects. I'm not sure of the effects it has on the liver but you can ask the pharmacist and they can tell you or ask the Dr. Some times they say the benifits out way the risks,but I'm no doctor.

You said his meld score is 9, mine is 12 and I'm on the transplant list,[low on the list] the higher my score gets the higher I get on the list. The hospital he went to for the transplant evaluation should have given him a diet plan on what to eat and what to stay away from. No red meat ,no salt, how much protien he should have or not ect. You should ask to see a nutitionist .

I hope I helped alittle. Take care and my prayers are with you both,

DeeDee


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/12/2009 6:57 PM (GMT -7)   
I wanted to welcome you to the forum and remind you that you are not alone. My husband has HepC and Cirrhosis and has been on the transplant list for some time, although his MELD is also pretty low. I wanted to address a couple of things you mentioned. First of all, the combinations of all the meds could be instensifying the depression issues. You REALLY need to talk to the doctor about this. Also, my husband went through this "thing" about how he was "nothing" any more because he could not work, etc...and I was the one working and taking care of him and our small child. Let me tell you that is a perfectly normal reaction for a man. If he can find someone to talk to that can help him come to grips with that part, it would help immensly.
 
He really does need to stop drinking. HepC can be treated....has he been put on the interfuron/ribovarin treatments? I know with some patients it can cause depression issues, so that may be why they have not gone down that road. Another thing I wanted to point out is that along with the drinking, he really also needs to stop smoking. I know our transplant center would not have listed him if he was a smoker, but I am not sure if that is a set in stone thing or not. The ankle swelling is normal for liver patients, which is why they have him on the water pill. Also, make sure he is taking his lactulose on a daily basis. It's yucky stuff but it really does help them keep from being confused, etc with the ammonia building up.
 
You need to educate yourself as much as you can on liver disease and also go with him to as many doctor apppointments as you can and write EVERYTHING down.....you need to be an advocate for him because he will not keep all this straight, so how is he supposed to convey everything to you?? Sometimes a 2nd set of hears is very very helpful.....that way you can remind him if the good news, too!!
 
Connie is right, you need to limit his sodium intake, no more red meat (although I do sneak it in for my hubby every once in a while), and lots of fresh fruits and veggies. The protein is good for him, but it needs to come from other sources.......
 
You will find this is a group of very compassionate people on this forum and it has really helped me through some of the toughest times we have had. As Connie stated, do please read through some of the educational posts.....you will learn so much more from that, I have found and that will help you be armed with information to be able to talk to the doctors!!
 
YOu take care of you!
 
Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/12/2009 8:58 PM (GMT -7)   

Thanks to DeeDee and mer for your informative posts.  I'm in agreement that Carl may be over-medicated.  Since alcohol is a central nervous system depressant, it may keep the antidepressants from doing their job...or can also cause drowsiness.  If he drinks with the Ativan, he will have more of a depressed effect.  When they are trying to battle both anxiety and depression with meds, it can be quite a balancing act.  Does your husband's doctor know that he is still drinking?

Mer, smokers are slower to heal, and of course there are also breathing issues for smokers when they undergo anesthesia...both reasons that doctors encourage patients to stop smoking.

Carlismyforeverlove, when he complains about his ankles swelling, tell him to elevate his legs and cut out salt.  If he won't do so, then tell him not to complain about it then.  Something tells me he wouldn't be willing to see a counselor to discuss his feelings, but it would be good for him if he would consider it.

A man's ego is so dependent on working and providing for his family, that when he becomes unable to work, it can cause enormous depression.  My father actually committed suicide because of it.  Counseling regarding his self-worth and the loss he feels by not being able to work would also be invaluable.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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