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Signs of end stage of liver cirrhosis?

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Posted 7/5/2008 1:20 PM (GMT 0)
Julykid,

Pink Grandma is so, so right!! You have to be forceful and keep on top of all your husbands symptoms. Had I known back in May when my mother passed of cirrhosis all that I know now thanks to this forum,  I certianly would have been more of a advocate. Please get him in for testing, it is beyond me if they even suspect internal bleeding why he isnt being treated now for it. I think in my mothers case in the end they just treated the symptoms as they came, which we were all blindsided about what would come next. In the end the only real cure we knew was a transplant which was a long shot, but thanks to her doctor she never had the chance to even be evaluated. The fact that they told you also that he only has 3-6 months is really surprising to me also, they gave us no time table. So I say keep on top of it and be the best advocate you can be and try and get him in for a "new" evaluation for a transplant, it will be a long road but I believe there is always hope.


Kipper

Posted 7/5/2008 1:34 PM (GMT 0)
Julykid

Welcome to Healingwell. I am so sorry about your family having to deal with cirrhosis. I agree with Pick Grandma that I do not understand why they are not testing your husband if the suspect he has internal bleedig. Please keep us posted on his progress. My thoughts and prayers go out ot you and your family.

Lucy
Posted 7/5/2008 2:27 PM (GMT 0)

thanks to all who responded,

i know that bleeding internally is really serious and i was not aware they had something where we could have took home to take a sample to confirm this or not. pink gradma, there has been red blood, dark(black) areas throughout and dark granually stuff... i will call the dr first thing monday to see about that.  my husband does not want to go to the hospital, like i said previously, the dr said that we can "tweek" him, but in 2-4 weeks he would probably be doing the same thing all over again. i do believe that he is bleeding but i guess it is not a lot at this time, i don't even know if that matters and when we went to the dr thursday i asked him and he was agreeing w/ me that it sounded as if he was bleeding.  i have asked my husband repeatedly to go and at least get checked out. he is so against that right now.  sometimes i think he is ready to quit fighting...he talks about how tired he is, he is so weak that he can't really do anything right now.  i think that is why he doesn't want to go to the hospital.  i really have not been able to read everyone's posting. pink grandma, i did read where you had lost your husband, so sorry to hear about that.  this disease really sucks, i hate that anyone has to go thru this with someone they love. kipper, sorry to hear that you lost you mom, i will be remembering you in my thoughts and prayers. thanks again to everyone. i will be thinking of you all.

Posted 7/5/2008 3:56 PM (GMT 0)
Oh Julykid, I totally understand now. It's so hard to get some people to see that the only chance that they have of surviving this disease to get treatment. When they told my husband that he had to lose 100 lbs he thought that it was impossible so he continued to drink and damager his liver . Once he developed cancer the weight dropped off quick and he was able to get listed for a transplant.
But if they refuse there's nothing left for you to do except get as educated as you can on what to expect next. Maybe if you tell him that since he has in essence given up without a fight it's time to start planning his funeral.....that might make him get motivated. When ever my husband started to give up I would tell him that if he did I would not make sure that our granddaughters remembered him. That they would forget about their funny papa. I was not above trying to make him feel quilty about giving up and leaving me either. I would say anything that I thought would keep him trying. He fought to the end. Our granddaughters still tell me they miss him everyday. And I actually I don't have to make sure that they remember him. He made such a wonderful impression on their young lives I don't have to.
Your description, does sound like internal bleeding. It' probably on of the reasons that he is so tired. His blood count must be low.

Hang in there Julykid and take care of you too. You need some TLC to get through this. And since he's unable to you have to do it
for yourself.........


Thoughts and prayers for both of you.........
Posted 8/11/2008 11:56 PM (GMT 0)
Firefighter

I am sorry that your boyfriend and you are having to deal with cirrhosis. It can be a horrid disease although there are things that he can do to slow the progression down. Certainly the first thing would be to quit alcohol and to follow up with doctors appointments. It might be helpful to you too also start a new topic and introduce yourself to everyone. There are many caring care givers here that maybe able to give you suggestions on what has helped them get through this rough time. I know this is a shock to get this information, but there is always hope.

Lucy
Posted 8/12/2008 1:44 AM (GMT 0)
Welcome Firefighter,

Sorry to hear your dilemna. I am only a 1 1/2 week old member. I have gotten so much education and understanding from this group as I am sure you will. My suggestion is to read as many of the posts as you can and understand the disease..

Try to stay sane..do something for yourself that is relaxing

Karen in Nevada
Posted 8/12/2008 1:30 PM (GMT 0)
Welcome to the forum Fire fighter. I am so sorry that you and your boyfriend are going through this. My husband has cirrhosis. He was diagnosed 2 years ago. It was very scary at first. I started trying to educated myself on the disease and it has helped alot. I am still afraid, but after learning and coming here to talk with people that understand what we are going through has helped to calm my fears a little. Cirrhosis effects each person differently. Some people go many years before they start having symptoms. My husband hasn't had any bleeds or any emergencie room visits. His main problems are encephalopathy, ascites and edema. With the help of medication we have been able to manage these problems to an extent. You will both be in my prayers.
Posted 8/12/2008 7:30 PM (GMT 0)

Hi Fire fighter,

 From what the nice folks here on this forum have told me, Lots and lots of water and fruits and veggies are the things that are  easy on the liver. They say to limit red meats and absolutly no alcohal. They say drinking is very very damaging to your liver and I believe that 100%. I had a few drinks at a Christmas party not knowing I had hep C and was sick for months. Now that I have been taking better care of my self I am feeling so much better.

Also my DR. told me that I can take only 4 tylonal in any 24 hr period.

Also I thin that exercise is suppose to be good for you although I dont do much of it except for what I get at work. I have a physical job so thats enough for me.

I hope some of that stuff help. I will be praying for your Boyfriend and you!

                                                                       Soonersfan1

Posted 8/16/2008 1:10 PM (GMT 0)
Hi Soonersfan, I am glad to hear that you are feeling better and taking care of yourself.
Posted 8/18/2008 9:57 AM (GMT 0)
hello to everyone my dad has cirrhosis we do not know if he is in end stage about 3 years ago we find out cos he vomit alot of blood he still drinks alachol not at home but we find bottles in his car and in the garage he used to go to a meeting and talk to the social worker but when the social work told us everything he told her he refused to get help on last wednesday the doctor came home and told him he has to go to hospital cos he has low blood ans he refuse he has not work these past ten years and now my mum has to work part time cos my brother 15 needs alot for school but she is worried cos she needs to leave him alone and that something will happend to him he does not want her to work but it is hard to live and i am worried alot that something happends to him as i live very far for there home and i do not work he is a good father but when he drinks he says alot of bad things to my mum and she cry alot and when we call for help here in malta they say if he refused they cannot help us so it is hard for us to see him killing himself
Posted 8/18/2008 8:34 PM (GMT 0)

Welcome to the forum, Rod.  I'm so sorry you are going through this with your dad.  It's true, though, that if he refuses help there is nothing you or anyone else can do.  I suggest you open a new thread to introduce yourself to everyone.  You will find a lot of support here, and people going through the same things you are.

Connie

Posted 8/20/2008 11:38 PM (GMT 0)
Hello everyone, I am new here and read some of the post. It has taken me along time to find the right place to learn and talk and I think this is it. I was dig. with hep c about 10 yrs ago. I was putting my daughter through college and never really paid no mind to it. That was until I began getting sicker and sicker, I already had a back injury " blown disk in my low back " but with lots of therapy I was dealing with it. Then in 2003 I was dig. with fibromyagia which stopped me in my tracks and I HAD to take pain meds after 1 yr of being bed ridden. Life was back to normal however I never returned to work. From there I had a gall bladder removed and 1 thing led to another and I tried treatment but couldnt tolerate it. that was about 2004/5. Finally I went back to my hep doc and he said I had cirrohsis, I immediantley started the ribivin and interferon treatment this time with more of a commitment. I stayed on treatment for 5 months at 1000mg a day and a shot of the interferon 1 time a week. My viral load went from 1million 650 thousand to 150. I thought that was good but my doc said the virus should of cleared. My question is can the virus still be cleared ? now that I already have cirrohsis ? On the meld scale he said I am a 7 and it goes up to 14 in there office, so what does that exactley mean, how long will it be until I start really getting sick ? I already have problems with no platletts and bruising but I need to get my life in order if I get sick soon. I am living in florida but would like to move back to ct where my family is. I am on disablity but it is not enough to live on. My husband I feel is just waiting for me to die so that he can have the house ( we own ) and he will also get 50,000 life insurance that I just found out about. He acts nice to me but I have known for awhile this relationship is over. I need to get out but feel trapped, I am thinking about going back to work just until I can make enough money to move ? I am so alone in this whole thing. I would love to hear from anyone with suggestions Thanks Kelly
Posted 8/21/2008 1:01 AM (GMT 0)

Hi, Kelly, and welcome to the forum.  You have really been through a lot.  How are you feeling now?  Do you feel well enough to work?  If you are on permanent disability, you would lose that if you go back to work.  I know that SS has a "back to work" program that eases you back into the work force, perhaps with training for a different type of work. Why did you only stay on treatment for 5 mos.?  I know most stay on it nearly a year.  Also, what is the 150 viral load?  Is that 150 million or thousand or just 150?  Are you staying away from alcohol and eating healthful things like fresh fruits and vegetables?  You can delay the cirrhotic destruction if you take really good care of yourself.  Are you currently seeing a GI doc or hepatologist?  One of them should be able to answer your specific questions.  We are not able to tell you when (or if) you will get really sick, as we are not doctors, and everyone is an individual and no two people experience liver disease quite the same.

Sorry not to be of more help.

Connie

Posted 8/23/2008 9:34 PM (GMT 0)

Fireflighter, your b.f. was very fortunate.  So relax and be happy.  It's great if he can cut down on the alcohol.  He will be healthier for doing so.

Hugs,

Connie

Posted 8/24/2008 3:43 PM (GMT 0)
Welcome to the forum Kelly. I think when your doctor says the meld score goes to 14 in their office it means that when your meld score reaches 14 they will do the workup to get you on the transplant list. My husband was told that when his meld score reaches 15 they will do a workup to get him on the list. His meld score was around 8 when he was first diagnosed. That was 2 years ago. He stays between 10 and 11 now. I don't really believe the meld score alone is a true indicator of how sick a person really is. It can really fluctuate. Just ask Lu Bunna. Have you read some of the older posts. They can answer alot of your questions.

I am glad you found us Kelly. You have found the right place. There are many people here always willing to listen and give advice when needed. I hope you continue to come back. You will be in my prayers.
Posted 6/17/2009 3:31 AM (GMT 0)
WOW!! So many people, so much suffering.

Fire fighter, mistaken diagnoses very common with this illness. First, I was diagnosed with Lupus. This was in 1990. Symptoms were mild and my weight caused me to have a swollen gut. I had swelling in my ankles, stools were light and pasty, and occasional vomiting and itching. The Doctor gave me darvocet for pain and told me I could take up to 2 at a time 4X a day!!. I was also given medicines for lupus. After years of suffering I decided to go somewhere else. The doctor I was assigned to was a real ding-a-ling!! She (YES I DID SAY SHE) gave me a prescription for PREMARIN!! (a drug used to treat menopause) Since I was 50 years old and had a Hysterectomy, I figured that I had the right to go crazy. I yelled and screamed and danced and hollered and cried, and cried. If I knew that there was something wrong with me, why didn't the doctors know?

I then decided to lose weight. I went to another Doctor and, after a battery of tests, wouldn't you know that I was scheduled to pick up a prescription for Fhen-Fhen two days before the FDA took it off the market? But, He did say that there was a problem with my liver alts. and he wanted o do a follow-up.

Well I have had all I could take from NC Doctors. So I went home to NY and saw a doctor from Albert Einstein College of medicine. Wouldn't you know that I had Hep C, Cirrhosis, ,diabetes, high blood pressure along with a host of other side symptoms. Then the biopsy........Stage 4. No cure for either, treatment is only for the symptoms not the diseases. So I decide to go back to NC so at least when I die my husband will at least be near is family. In 2006, I became very ill. I went to the hospital and met a gastrologist. When I was released from the hospital, I went to see this doctor. He has been treating me ever since.

I suffer a lot, over 20 pills a day, insulin and pills, inhalers, nebulizer, CPAP at night, severe depression. Oh I must not forget those fantastic shots!! It's only once a week that I have to give them to myself but in my case, they turn me every way but loose! Pegasys has it's own set of side effects and it affects different people different ways. In my case, fever, chills, wheezing, tiredness, and sometimes my temper gets so bad, I could bite a bull!! The pain and vomiting is getting worst and so is the depression. I know that this disease can be fatal, but I deal with it. Sometimes people think I am crazy because I laugh and make jokes about my situation. But, there is nothing else to do! I have to admit that some of my episodes are funny! I try to be as upbeat as possible. This way others don't feel uncomfortable around me.

Sunday I was all dressed up but I still did not feel good. One lady said ""Girl, you don't even look like you are sick." I gave her my signature sweet smile and said "That shows you what false hair, green contacts, false teeth and a wonder-bra will do." Everyone got very quiet for a second...........then they all started laughing!

I am saying this to all olf you. No mater what, keep your spirits up. Cry if you have to, yell if you have to. Eat some Chunky Monkey Ice Cream (all of it). Dance up and down the sidewalk (I do)


REMEMBER.......... EVERY PAIN THAT YOU GET MEANS THAT YOU ARE STILL ALIVE. Enjoy it!!


The Dream Weaver


For all things I have the strength by virtue of him who imparts power to me.
(PHILIPPIANS 4:13)
Posted 6/17/2009 4:22 PM (GMT 0)

Dream Weaver, welcome to the forum!  I love your attitude!  You actually posted to an older thread.  In order for everyone to see your post, it is best to start a New Topic and introduce yourself and your situation.  If you know how to copy and paste, you can do that with your previous lengthy post...just put it in a new thread by clicking on New Topic.

Are you taking antidepressants?  I know that people on hep C treatment usually do, as well as medication for nausea and other side effects.  It's a shame you had to suffer so many years without a correct diagnosis.  I hope you will continue to post on this forum, as there is a lot of support and information here.

Hugs,

Connie

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