Advanced Cronic Liver Disease

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

jjan
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/26/2007 10:36 PM (GMT -7)   
Hi I'm Jan
My husband is 64 years old he was diognosed with cerosis of the liver 2 years ago when we took him to emergency vomiting blood and with blood in his stool. At that time he was trying to curb his drinking but he was still haveing an ocasional wine. He went into DT's and had to be restrained which made him so upset that they had to incubate him and put him in an induced coma. Next thing we new his kidneys were failing. However he did come out of this and he never drank again. He has had many problems since then he had schingles gets disorented needs to be on oxigen and is very tired all the time.( he also has heart problems, is diabetic.) Two days ago his liver doctor sent him for an ultra sound just as a rutine checkup. He does not move very well in the mornings but he had to fast for 12 hours for this proceedure so his appointment was at 8:30 in the am. When he got out of the shower he was not feeling well and out of breath but I just atributed that to the fact that he is not used to having such an early appointment. By the time we got to his appointment he was shivering had a fever and extreamly short of breath. He was admited to the hospital his stomach was swolllen and he had a yellow tinge to his face and eyes. After he had some fluids taken from his liver we were told that he had an infection. They are giving him albumem and antibiotics and are keeping him in the hospital till at least Monday. I am concerned that he may have this infection problem from time to time from now on has anyone else had these kind of simptons with a loved one and what stage of this disease is he in. He was a candate for a liver tranplant 2 years ago but turned it down.
Thanks for any input

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/27/2007 8:52 AM (GMT -7)   
Hi Jan, Welcome to the forum. I am so sorry to hear that your husband suffers from this terrible disease. As you are probably learning it can be a roller coaster ride, a lot of ups and downs. If your husband was a liver transplant candidate two years ago that probably means he has End Stage Liver Disease. If you are asking how long, there is no way knowing. If you read some of the other posts here you will learn that people with cirrhosis suffer a lot of different things and then pull through. Do you know why he doesn't want a liver transplant? It sounds like he may be needing one soon.

This disease can take a lot out of the caregiver also. Take care of yourself, and find a support system. Coming here has helped me a lot. You and your husband will be in my prayers.
Butterflythree


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/27/2007 10:52 AM (GMT -7)   
Hello Jan and welcome to HealingWell. Liver patients imune systems are compromised so they tend to get infections easily. It really doesn't sound very good with the symptons that your husband is having. Was he approved for the transplant list and then turned it down or did he decide that he couldn't jump through all the hoops that they have for getting evaluated for it. If he jumped through all the hoops and got approved I can't understand him turning it down at that point. It took my husband 2 years to decide that he had a chance to make the list and to start jumping through their hoops. His only chance for survival at this point maybe be the transplant if infact he is still healthy enough to get listed. And I agree with Butterfly for them to even consider him for an evaluation for a transplant he had to be End Stage Liver patient or very close to it back 2 years ago. If you need any other questions answered or need support please come back . That is what we are here for. Thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


jjan
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/27/2007 8:51 PM (GMT -7)   
Thank you for your input It helps to have someone else to talk to about what is going on I am supprised that there is not a list on the chat rooms for liver disease or am I missing something.
Jan.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/27/2007 11:02 PM (GMT -7)   
Hello Jan, When I was going through this terrible ordeal with my husband it felt wonderful to find this site. I just wish that I had found it sooner. None of his family or mine knew all the terrible things that go on with the liver patient, they only saw that bad things that he did, like getting real grouchy or rude. I couldn't make them understand how sick my husband really was. They thought that he was faking it or that he could control himself all the time. Finally I could communicate with people who really knew what I was going through and knew just how terrible this disease is. It was a life saver for me.

Hepatitis is on the list of chat rooms scoll down with the arrow. I have never seen any of our hepatitis members there though. Are you interested in chatting? If we get others maybe we can set up a chat time on the calendar. Take care.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


muffin3242
New Member


Date Joined Nov 2007
Total Posts : 1
   Posted 11/11/2007 9:05 AM (GMT -7)   
Hi Everyone I was happy to find this site I have been going through the same thing with my husband since january he had 40 pounds of fluid on him his kidneys were infected from the fluid he was so weak that I had to keep the potty chair next to his chair in the living room sometimes it still wasn't close enough and I had to bathe him because of accidents he was in and out of the hospital 3 times for rectal bleeding he finally was getting stronger he went back to work in august then he started drinking again said it helped the pain he didn't want to take pain pills so now he's starting over again with the stomach swelling and the tar looking bowel movements and having accidents I brought him home from work twice last week he was light headed and sick to his stomach thank god he has a doctor appointment on the 19th I told him to make sure he tells the doctor he's been drinking I'm sure she will tell him he has fluid on his stomach again he was doing so good but people tell me don't harp on him he is going to do what he wants to do I will keep everyone posted what is going on my heart goes out to all of you I know just what you are going through take care

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/11/2007 2:30 PM (GMT -7)   
Muffin, Hi, Welcome to the forum. I am sorry to hear that your husband started drinking again. That is one thing he should absolutely not do. He won't be able to make the transplant list if he continues to drink. He will also be in need of a new liver a lot sooner if he continues to drink. Just a small amount of alcohol can be severe in people with cirrhosis. My husband continued to drink when he found out he had hep C, and I think that is why he has cirrhosis now. Although I know they both can lead to cirrhosis. I was constantly begging him to stop drinking until one day I just gave up. I let him live his life, and I lived mine. He finally stopped drinking when he got the diagnosis of cirrhosis. Looking back I wish that there was something that I could have said or did to change things, but I know there was nothing that I could do. I don't blame you for harping on him. If that's what you feel the need to do go right ahead. At least you won't be keeping it to yourself. My thoughts and prayers are with you.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/11/2007 2:51 PM (GMT -7)   
Hello Muffin, So sorry about your husband. I know from experience about the harping part. He is your husband and you do what you feel you need to do. Harping or not. Are they taking care of your husband? I love how people always have ideas on what you should say or do but when it comes down to the assistance that you will need they haven't a clue or are no where around. And yes it is up to him. But I myself could not just sit back and watch my husband drink himself to death and not say anything. It's not a good sign about the tar stools. If your talking about black stools it maybe blood in them again. Do they have him on lactolose yet? Are you going to the doctor with him? My husband would not tell his GI that he was still drinking. He thought that he was fooling the doctor but his progressing liver damage told the doctor on him. He finally quit after his first encephalopathy episode. Come back to vent or if you need any support or info. We will be here to listen and help if we can. Good Luck.
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.


medwife
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/12/2007 9:20 AM (GMT -7)   
Hi im new to all this.I just recently found out my husband has cerosis to the liver.His belly is filled with fluid and feet were swollen badly.they doubled the meds for the drsinage.IM going crazy because i dont think the drs are telling us everything. I know he is at advance stage of cerosis. I found it myself on line.my husband Quit drinking a year ago.He just got over phnemonia(I hope i spelled that right) any way hes been on oxeygen. they just took him off. last night he keeped me up all night complaining of pain in his right side.So i call off work so I could take him in. he has appointment at 1:30 today.I know I havent been through what half of you had been through. But im exusted.What are the next stages anyone KNow?Thanks midwife tongue

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/12/2007 9:54 AM (GMT -7)   
Welcome to the forum, Muffin and Medwife. Medwife, liver disease is such an individual thing that I don't think anyone can tell you what to expect next. You need to ask his docs to be blunt with you about his condition and prognosis. (It's spelled pneumonia...but you were close.) ;)

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/12/2007 10:07 AM (GMT -7)   
Hello Medwife, Welcome to HealingWell. So sorry about your husband. It's good that he stopped drinking already. That's one hurdle out of the way. There is a wealth of information online to be had. But do try to get his doctor to tell you about his condition and where he is at. Take notes and ask questions because they are not going to volunteer anything. Do you have anyone to help you out a little? I did it all myself ....work and take care of my husband. I was too stubborn to ask for help. If you have a close friend or relative you need to ask for help sometimes or you will be no good to your husband. You'll end up sick yourself. Don't assume that they know that you need help....ask for it. You're going to need all your whits about yourself that you have to get through this so it is very important that you take care of yourself too. There's posts on this forum about what may happen down the road with your husband . If you have time go through some of our previous posts . Good Luck My thoughts and prayers will be with you and your husband.
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.


medwife
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/12/2007 10:19 AM (GMT -7)   
Thank you Hep93, I do ask and they dont say much.But If i think back hes had this for awhile.In july they diagnoised him.Reading everyones letters He dosnt seem to be that bad but then he has diffrent symptoms.Cronic coughing, never smoked,Yellowish eyes. He gets well for about a week and then he is sick again.

medwife
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/12/2007 10:26 AM (GMT -7)   
ThankYou Grandma, Iwas so happy to find this sight and only by the grace of god. Reading the post really helped me alot.And I will get help.I fell like it is already making me lose my wits.You are one Strong lady. Thankyou again, midwife

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/12/2007 10:39 AM (GMT -7)   
Looking back on it now. I don't feel I was strong. I feel that I was stupid for not asking for help from people who loved me and my husband and would have been glad to help. Maybe if I wasn't so tired and stressed..... I could think straight enough to figure out some of the things that the docs were dropping the ball on before it was too late. Like I always say hind site is always 20/20. Take care.
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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/12/2007 4:54 PM (GMT -7)   
Hi Medwife, My husband also has cirrhosis. It was a year ago in July that he was diagnosed. I know how you feel when you say you feel like you are losing your wits. There are days that I think I don't no if I can do this any longer, and he is not as sick as a lot of the other people at this forum. I feel so weak and afraid at times. My husband seems fine at times and other times he is very fatigued, has fever, swelling of stomach and legs and episodes of encephalopathy. It seems when the swelling in his legs get bad an episode of encephalopathy will occur. Those always scare me but they aren't really severe yet. I can imagine how I will be when he has a severe one. This disease is so unpredictable that I think it makes it hard for the doctors to know what to tell you. My husbands doctor didn't really tell us anything. I learned a lot (and am still learning) by using the internet and this forum. Coming to this forum has helped me a lot. There are a lot of people here that understand what you are going through and always willing to listen. I check the sight everyday. If you need to get something off your mind I will be here. My thoughts and prayers are with you.
Butterflythree
 
There is always hope!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/12/2007 5:13 PM (GMT -7)   
Pink Grandma, You are a very strong person. You have helped me so much, and I have so much respect for you. When someone you love is slipping away right before your eyes it is hard to think straight, and people don't realize how much doctors drop the ball. I have been reading some posts on the other forums here and was shocked to see that it happens frequently. Did your family and friends really understand what was going on? Because when I try to talk about my husband's illness to our family it is like they are in denial. I think they think I am over-reacting and don't see the changes that I see. He is the youngest of his brothers and sisters but they still tend to lean on him. His brother is contantly needing him to give him a ride (because his vehicle uses too much gas), and I have a hard enough time keeping him from driving when I know he shouldn't be. There is no way that his brother can't tell by looking at him that he is not right and shouldn't be driving. I don't think I will be able to count on anyone except my kids when the time comes. I do thank God for them. They bring back the joy to my life.

I hope you are doing well. You are still in my thoughts and prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/12/2007 8:46 PM (GMT -7)   
Butterflythree, prior to developing liver cancer and mild cirrhosis, I was just dealing with hep C. The main symptom I had was overwhelming fatigue. It got to the point where I could not work full time. Even working part-time, with every passing year I worked less hours (and was finally awarded SSD, due to another disease.) I absolutely had to get a nap in the afternoon--still do. The fatigue is hard to explain. Someone once posted on another forum that it is like walking through molasses. I think that's a very accurate description. It's not a matter of being sleepy, and it doesn't matter how much sleep I get at night...I still am totally unable to function by late afternoon. When I have a long day at the hospital, going through scans, blood work, consults, etc., I end up sleeping all day the next day. Nobody understands this facet of hepatitis, unless they are afflicted with it. I have a friend who used to laugh when I told her I had to get a nap before getting together with her in the evening. I finally told her that it was not funny...that this was a manifestation of hep C and it was absolutely necessary that I get a nap. After that, she didn't laugh about it. So don't give up on trying to get people to understand, particularly family.

Hugs,
Connie

michael kelly
Regular Member


Date Joined Feb 2011
Total Posts : 488
   Posted 2/27/2011 3:18 AM (GMT -7)   
Hi my names Karen ,my husband has chronic liver disease ,we both drank a lot until he was diagnosed last May and we havent touched a drink since .Michael would like to chat to anyone who is going through the same thing as he is .He is on a lot of medication Lactalose , lasix pramin spironolactin and eats a perfict diet 'The specialist is very happy with his progress but has had to do internal banding due to bleeding ,and has asked him if he wants to go on the transplant list ,he doesnt want to as he has been through so much pain and says what if the liver doesnt take? the doc says he has a 40% chance of living for 5 years has anyone been through this and lived very long when doing all the right things? Karen

SadWife
Regular Member


Date Joined Jan 2011
Total Posts : 321
   Posted 2/27/2011 6:15 AM (GMT -7)   
Hello to all the new members. I'm so glad you found this site. It has helped me so much. Unlike some of the others, my husband still drinks. He has cirrhosis, ascites (abdominal fluid), swelling in his feet and legs, portal hypertension, and so many of the others symptoms described. I have point blank asked both his family Physician and his GI Doctor what stage he is in and cannot get an answer. I think that is a very hard question for them to answer because honestly they don't know. Everyone is different. I have been through the begging, pleading, threatening, fighting and everything else you can possibly do and like some of the others, I gave up. It is something he has to decide he wants to do and obviously mine has not reached that point. I stay with my husband because I love him no matter what. But I can tell you that it is hard to sit by and feel helpless because you cannot convince them to stop. It is physically and mentally exhausting so you HAVE to make time for yourself somehow. I work and have elderly parents that I see about too, but I'm lucky that my family is a very loving, giving, type of family and they are constantly there for me. For those of you that have stopped, I am so happy for you! It is truly a blessing and you have made a life changing decision! There are some wonderful people here and you will be amazed at how many people are at the same point in their life as you are. I am not a moderator nor an expert, but am happy to share my experiences if you just need to chat. Take care!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/27/2011 1:05 PM (GMT -7)   
MK, you picked up on a VERY old thread.  (SW, these are not new members--except for MK--they are older ones who we don't see here anymore.)
 
MK, I'd like to ask that you copy and paste your post into a new thread (copy, hit New Topic, give it a title, and paste into that New Topic.  If you don't know how to do this, then please start a new thread (hit New Topic instead of Reply) and post again.  You will get many more replies by doing this and will not "slip through the cracks" of a 4-year-old thread.
 
Welcome to the Hepatitis Forum.  I hope you will find the answers you seek and I know you will get a lot of support here.
 
Somehow that 5-year survival rate after transplant seems low to me.  However, there are usually some problems that arise early on and can be dealt with.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 7:11 AM (GMT -7)
There are a total of 2,733,449 posts in 301,122 threads.
View Active Threads


Who's Online
This forum has 151259 registered members. Please welcome our newest member, dolly23.
285 Guest(s), 10 Registered Member(s) are currently online.  Details
Cigafred, Hol1979, Stanislav, pmm73, ks1905, psbg, Traveler, trumpet123, fiddlecanoe, (Seashell)


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer