HealingWell
Search Close Search
☰

Signs of end stage of liver cirrhosis?

Support Forums
>
Hepatitis
✚ New Topic locked
1 2 34 5 6 7
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/15/2008 9:27 AM (GMT 0)
Connie: How did you appointment go? Hope it went well. There is no problem with having to take a water pill. I've been taking them for years to help lower my blood pressure. let me know about you Jan 14th appointment. june
Posted 1/15/2008 10:05 AM (GMT 0)

 

     Glad you answered Medwife's question about MELD. I would have said the same thing. In fact I found out my own score before the Dr.'s told me what it was.

     As far as you decision on the liver. I would have declined. Of course I don't know the severity of your liver. The biopsy say it's bad 4 of 4 ESLD. Thus far my problem is the memory and as you mentioned sort of getting dizzy spells. The itching has gone away for the moment. My edema is under control for now. My MELD score is holding at 9 maybe even less. They told me I only need labs done every three months. So overall not to bad. So it easy for me to say i would have declined  . It must have nearly sent you over the edge having to make a decision  of that magnatude in 10 minutes. Don't look back look foward.  june

    

Posted 1/15/2008 1:58 PM (GMT 0)
Thanks June, I spoke with my gastro doc on Mon and he said I probably made the right call. I am very unhappy with my coordinator though. She was to have explained this scenario to my wife and I so that we could make a decision based on knowledge and not feelings. I have called her 3 times since Dec. 28 and she has yet to return a call. I am starting to become very skeptical about how things are done at a very excellent hospital ( The Hospital at the University of Pennsylvania ) because of her. Any suggestions as to what I can, or cannot, do to remedy this situation. Delivered by the mailman.
Posted 1/16/2008 1:46 AM (GMT 0)
Hello Mailman, My husband's transplant coordinator dropped the ball also. I really believe that my husband would have made the transplant list the first time around had it not be for her. And it was directly because of her that it took them 3 months longer than needed to have my husband's case brought back to to the transplant team's meeting for a re evaluation. Coordinators have more power than most people think. They coordinate all the tests and meetings for the transplant evaluation. If they don't get everything scheduled then it takes longer to get to the transplant meeting for the final decision. All I can say is to stay on her and be as nice as you can. It is very frustrating to keep waiting for her call. Call and leave her messages everyday ...twice a day if need but be very professional and courteous. You don't want her to get upset with you. Your life is literally in her hands so to speak. But since it has been since 12/28 I think I would go above her head. But be nice. Just say that you thought that maybe she was on vacation or something. Good Luck ..........Thoughts and prayers
Posted 1/16/2008 1:25 PM (GMT 0)
Thanks Pink Grandma. She actually called me back yesterday afternoon and apologized for the lack of communication. In the end she said I made a wise choice because the liver was not transplantable due to a high level of hep c. She also went into some detail as to what a high risk liver actually is. She promised to call me at least once every 2 weeks even if nothing has changed just to comfort my wife and I. We will see if she practices what she preaches. Prayers to all. Delivered by the mailman.
Posted 1/18/2008 8:17 AM (GMT 0)
Hello, Everyone! My name is Bebe. I am a new member. I am in desperate need of help. On New Year's Day we found my father unconscious. He had been drinking for days and had fallen and hurt his head. We took him to the ER. After almost two weeks in ICU due to bleeding from his brain, things started getting complicated, until finally the doctors told us that my dad has end stage cirrhosis. I cannot cope with this! I don't know what to do. I am the head of our family although I am only 31--it comes with the territory--I am the oldest of four kids. I am "the one" that takes care of everything! I am overwhelmed.... My dad is not doing well. On top of it all he is diabetic! I have no support from anyone because everyone comes to me for support! I want to cry to the top of my lungs until I have no more tears but I cannot.... I have to be strong for everyone. On top of it all, I have five children that need me...I am going crazy! My husband is no help, he is too busy taking care of his stuff... Please help
Posted 1/18/2008 10:20 AM (GMT 0)
Wish I could be of some help. I'v been reading about end stage on net. And of course all the forums . This is the best one I have found. Everyone has been extremly caring and very helpful on this forum . But I'm the one with end stage. My husband is th one having to deal with me. I know it"s starting to get him down. I'm just not the same person and I understand that I'm incoherant at times. And lactulose does'nt always work the way it should. I can only wish you the best. Maybe you could get someone in the hospital to direct you on getting him some home health care. I guess right now it all depends on his injuries and how bad they were. Keep posting and let us know how he's doing . Prayers for you and your dad . june
Posted 1/18/2008 1:46 PM (GMT 0)
Hello June and welcome Bebe, Hope your feeling okay June. For you to realize that your husband is having a rough time also is good. Tell him about this forum. It's great for caregivers too.

Bebe, I am so sorry about your father. It's a hard place to be in. Having everyone look up to you for answers and actions. I am the baby of my family but I have had to be the strong one. So I know how you feel about wanting to be able to share the load sometimes and just have someone comfort you. ((((((HUGS)))))). June is right. This is the best forum on the internet for liver disease. Everyone here has some sort experience with it. We are a well rounded group.
With everything that's on your plate you need sometime just for you. To unwind and recharge your batteries. What relaxs best? Do it. Even if it's only for a few minutes a day. You are going to have to ask your siblings for help. Let them know that you don't have all the answers and with your full house at home they need to chip in and get educated about this disease and help out some. I know that's it is easier said than done but you really can not do it all yourself. You will end up in the funny farm if you try. Refer them to this forum. There's a lot of good information here and we can refer them to more detailed websites also.
As you realize this disease is no joke. And your father is very sick. We are here to support each other as best we can. Hang in there and take care of yourself. My thoughts and prayers will be with you and your family.

P.S. Bebe you may want to start your own thread and introduce yourself to everyone.
Posted 1/18/2008 4:06 PM (GMT 0)
Gil F is right on! Many folks with liver disease actually die of kidney failure. In addition to liver related problems look at kidney function too.
Posted 1/18/2008 11:24 PM (GMT 0)
Bebe, I am so sorry that your father is doing so poorly. Pink Grandma has given some good advice. She is very educated in the role of caregiver for a person with this illness. Take her advice. Also keep coming back. It has really helped me a lot being able to come here and share with others that understand. You will be in my prayers.
Posted 1/20/2008 12:25 AM (GMT 0)

Bebe, welcome to the forum. I am so sorry about your dad. Most members here have experienced similar things. Like you everyone asked me the questions and depended on me to handle and arrange my moms care when she was diagnosed with liver cancer secondary to hep and chirrosis. I am not the oldest, actually I am the second oldest but I am a nurse so they just turffed it on me. I was overwhemed too. My siblings did NOTHING to help with her care so I know what you are going thru. Although my children are grown I was trying to start a new business when all this happened. When I asked for help my brothers and sister were too busy so it got left to me. I can tell you from experience that this forum and the members here saved my sanity. I was on here everyday venting, asking questions, and overall depending on them to help me. The good news is that they all pitched in with good advice and tender hearts. You can only do the best you can and after that it's in God's hands. You can't MAKE your siblings do anything-they have to want to. Maybe they will get involved by reading some of the posts here. Take care of yourself too. It's exhausting having 5 kids and a parent that is so ill so try to make time for you. Even if it is just a bubblebath. Keep posting as we want you to know that we are all here for you.

 Shelly

Posted 1/21/2008 5:55 PM (GMT 0)

Bebe, Welcome!

     I wish I had some magic words that would make it all go away, but I don't.I'm sorry to hear about your dad but you have to keep talking about it. I know I must be a pain in the butt to my wife, and I have encouraged her to join a forum for some release. But, she is the type of woman that needs to actually talk verbally to someone. She is seeking out support groups other than the forums, but has not yet found one where we live. Maybe you should try to do the same. Your husband it seems to me does not know what to do. I don't think he don't care, but we men always try to fix things and when we can't we have a tendency to do nothing, (speaking for myself ) Continue to be strong and keep talking to us. I'm sure you are in all of our prayers as is your father. May GOD Bless and keep you during this trying time in your life. Delivered by the mailman.

Posted 1/22/2008 7:07 AM (GMT 0)

Thanks to everyone! I am trying to stay strong but I can't. All I do nowdays is cry. I feel like an unfit mother. I haven't cooked for the kids in a week. My sister in law has--they hate her cooking. My siblings are coming around. Thank you guys for responding. Although I don't personally know any of you, I feel like you guys are really there for me. It means the world to me right now. God bless you all. My husband is now trying to be there, but it just hurt me so much that he was not there for me, that I really don't want him with me now. As for my dad, he is still doing poorly. He is also diabetic, so it makes everything harder. Can someone tell me a little more info on transplant lists, etc. Thanks again. I will come back as often as I can.

Bebe

Posted 1/22/2008 1:17 PM (GMT 0)

Bebe,

       The fact that you are talking about what is going on shows that you ARE being strong, by doing what you need to do for you right now. It is a hard thing to do, and people might not understand, but, you can't be there for anyone else if you don't take care of YOU! Give your husband a chance. At least he has come around and is now trying to be there. Not accepting that help will, in my opinion, only drive him further away. Do a google search on MELD SCORES. There are sights there that will give you information about the transplant scores and the whole process. Hope I helped. Keeping everyone in prayer. Delivered by the mailman.

Posted 1/22/2008 1:49 PM (GMT 0)

Bebe, I agree with mailman. Let your husband help where and when he can. Try to understand that not everyone can deal with illness and he may be someone who has difficuly with it. It doesn't mean he doesn't care it's just that he can't cope with it. My husband is not equipt to deal with any illness let alone something so serious as liver disease. He stayed completely out of the picture during my moms illness and eventual death. I knew he was like that when I married him so I couldn't expect anything different with my moms ordeal. I have learned from experience that crying so much is a tremendous release of frustration as well as our method of coping with grief and fear. Try to keep things in perspective and deal with one day at a time. We are here for you so vent as much as you need to. We all understand. I am glad that your siblings are coming round. Your best ally is knowledge so learn everything you can on your dads disease process and possible treatments. You won't feel so overwhelmed when you know what is going on. God bless

 Shelly

Posted 1/23/2008 3:50 AM (GMT 0)
Bebe, I agree with Mailman and Shelly. Let your husband be there for you. Before my husband was sick, I could always depend on him in trying times. Now that I have lost a part of him, I would give anything to have him back. Don't take for granted one single day. I will keep your father in my prayers.
Posted 2/1/2008 3:41 AM (GMT 0)

Hey everyone!  I am new to this site... was looking around trying to find some information about end stage liver disease and found this one.  I really liked the fact that everyone was so nice and informative, and am hoping that I can get some answers.  I am 32 years old and the youngest of 4 children.  Both of my parents are passed on, and now my 42 year old brother is in the hospital with symptoms of encephalopathy and swelling as well as jaundice.  They have told him that he has end stage liver disease and will need a transplant, but the only thing with him is that he is not telling the doctors the truth on his circumstances.  He has told them that he has not drank within the last 4 months, when in fact is was less than a week ago before he went into the hospital.  He has chronic diarreah as well as nausea and is very moody.  My question is what to expect next?  They have told him that he needs a liver transplant, but with things like they are, I am not sure that they will put him on any lists.  Could someone please give me some sort of idea on what to expect and things I could do?  I appreciate you all so much.

Thanks so much!

Posted 2/1/2008 5:00 AM (GMT 0)
Hello Callapitter and welcome to HealingWell. Sorry about your bother.
Let your brother know that he is not fooling anyone but himself. He is actually robbing his self of more time on earth. My husband did that exact same thing. His doctors knew. Even if his blood tests come up negative for alcohol doctors can tell by a number of other symptoms as to whether the patient has in deed stopped drinking. Have a heart to heart straight talk with your brother. He will probably have to go to AA before they will list him even if he is a good candidate. He needs to stop now and get his priorities in order or he is going to lose any chance of a longer more productive life. nono

This is one hideous disease. But with a transplant he can have a new chance at life. It won't be easy but it will be well worth it if he gets a liver transplant in time. It is not fun trip for the patients or caregivers.
Show him this website. Have him read a few of the posts that you have read. You can lead a horse to water but you can not force him to drink. But in this instance shove his head into the pail if you have to. Take care and Good luck!
Posted 2/1/2008 1:36 PM (GMT 0)

Gram,

Thank you so much for your quick reply.  I will indeed try to have a heart to heart with him, but I only hope that he will listen to me before it is too late.  I have already talked to the Dr. and told her all that I knew and asked that she work with us on what we will need to do to help him.  He is a very stubborn man, and I am wondering if the ammonia levels have already went to his brain a bit .  I am so glad to have found this website and you wonderful people.  Thank you so much! yeah

Posted 2/1/2008 2:21 PM (GMT 0)
Welcome Callapitter, I agree with pinkgrandma, Your brother is only hurting himself more by not being honest. Sometimes I think we really don't know just how sick we really are. I had been clean and sober for some time when I was diagnosed and felt healthy as a horse. But this disease is so sneeky that by the time you are diagnosed major damage has been done. I am awaiting transplant and today I have to have a parencetisis done on my abdomen (drain buildup of excess fluid).Try to encourage your brother to read up on his disease so that he may become knowledgeable. I agree with grandma that he may need to get treatment for his drinking before he will have a chance at getting a doner liver. There are precious few doner livers available as it is, and the people who have the best shot at survival are going to receive them. I will keep the both of you in prayer as my wifw and I do all people suffering from this disease. Keep us posted as to what is going on WE DO CARE!!  Delivered by the mailman.

Posted 2/1/2008 3:38 PM (GMT 0)
Thank you so much mailman. I spoke with him on the phone this morning, as the hospital is 2 hrs. away. I told him that he has to be honest and work with the doctors if he wants them to help him. I told him that he is only hurting himself by not working with them, as they will not put him on the list if they dont think he is a deserving person, and that he needs to start right now and fight this thing with all that he has. I am quite concerned with his memory, though, as I talked to him yesterday and he told me the same thing twice in about 2 hours, like he hadnt talked to me before, and the same thing happened this morning. When I was there on Wed, the nurse told him that she smelled ammonia on his breath, and said that she would talk to the doctor about doing something to help him with that.... I am hoping that he is not getting full fledged encephalopathy and hoping that he continues to fight it with all that he has. I was really straight with him and told him that this is not something to mess with, and if he doesnt start right now, he may not make it much longer. Thanks again for all of your help.
Posted 2/2/2008 12:00 AM (GMT 0)
Callapitter, I just wanted to welcome you to the forum. I am sorry to hear about your brother. I hope that he gets the help that he needs with the alcohol problem. I have an uncle that died of cirrhosis when he was 36. He didn't stop drinking until it was too late. My husband suffers from encephalopathy caused by cirrhosis. He currently takes lactulose 3 times a day to help with it. He is not yet on the transplant list. They say he is not sick enough. I really have to wonder if the MELD score is a true indicator of how sick a person really is. His score has remained at 10 for a little over a year now, but his health has really gone down hill in that same amount of time. Especially his mental ability. I will pray for your brother and you. Take care of yourself. This disease is really hard on the person suffering from it and the caregiver.
Posted 2/2/2008 12:02 AM (GMT 0)
Mailman, You are still in my prayers. I hope you have been getting to enjoy those grandchildren lately.
Posted 2/2/2008 1:13 AM (GMT 0)
Hey everyone. I just had an update from my brother's nurse. His liver enzymes were over 600 and they said that he is not a candidate for a transplant due to his massive alcohol problem. She said he is definitly end stage and has had diarreah for over 6 months now that they cant get under control. Now comes a hard question....... how long do you think he might have seeing as how his ammonia levels are very high, he is swollen terribly on his legs/ankles and his stomach, his eyes are yellow, and he cant hardly eat and coughs all of the time.... I am just really looking for some clarity where this is concerned. Please, anyone, dont be afraid to scare me, I know it is not good. I just need some answers. Thanks again!
Posted 2/2/2008 1:37 AM (GMT 0)

Callapitter, hi and welcome to the forum. I am so sorry about your brother. It is so sad for family members to watch this all occur and feel so helpless. You asked how long your brother has, right? There is no definitive answer to that question. On the otherhand you seem to be very realistic and aware that his prognosis is poor. He could pass away at any time or last for awhile. I don't think it looks too promising in any event. Even if he recovered enough to be discharged and sent home there is no guarantee that he would stop drinking. It is inevitable that he will not survive if he were to continue drinking. Has the Dr said anything at all concerning a time frame? Have they actually said he will pass away during this hospital stay? I would suspect that they haven't because there is no real way of knowing unless he was in a deep coma or something of that nature. They are probably giving him Lasix to decrease the fluid load, have they tapped his abdomen to drain off the fluid? They can give him nourishment thru his IV.I wish I could tell you something more helpful and more promising. All we can do is pray that he improves and that he has some peace. My thoughts are with you and him.

 Shelly

✚ New Topic locked
1234567