Husband has end stage liver disease

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moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 6/30/2009 4:22 AM (GMT -7)   
Hi everyone, This is all new to me and very difficult.I have been reading all the posts and just now getting up the nerve to write.It just seems like it is all to much.Here goes.Five years ago my husband went into the hospital  vomiting blood.We found out it was varices bleeding and that he had hep c ,and liver disease.How long he has had it ,we don't know. We followed the rules to the letter.Absolutely no alcohol ,endoscopies every 3 months, and his medications. He did great up until Nov 2008 .He went into the hospital and almost didnt come out. They said he had multiple organ failure and was on a respirator for a week. I still do not know what caused all of this. He did come home though but things have been awful since then.He is so weak that he can no longer work.He has ascites so he has fluid drawn off about every 2 weeks.He went from 180 to 125lbs since nov. He had one episode of encepalopathy and I had to call ems. He is now on medicaid and SSI. He sleeps most of the time and basically feels like crap all of the time. We are now trying to get on the transplant list.Because of medicaid he has to go through 6 months of alcohol and drug therapy. We just found out that he has a heart problem and if it can not be fixed...no transplant.We are down to my income and we are barely making it,but that doesnt bother me,it's watching him deteriorate right in front of me and I can't do anything. I wonder everyday ,what is next. I wonder what I will wake up to or what will happen when I am at work. I know his mind is not right and he can't remember the simplest things.It makes me so sad that we don't have a life together anymore.He sleeps and I work and take care of him.I feel guilty for feeling like I have no life because he doesn't either and he is the one who is sick.I try to be hopeful but I dont see him making it to a transplant at this rate.It is so depressing that I have bouts of crying all the time.Sometimes I just look at him and it makes me cry and have to leave the room. He now has the shakes so bad he can hardly eat, and he has the hardest time sleeping at nite so he just takes cat naps all day. He barely eats with all of the fluid and sodium restrictions. What can I do to help him in all of this,while I am trying to stay sane at the same time? I feel some days like I am going to fall apart.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/30/2009 9:53 AM (GMT -7)   

Moonroe, welcome to the forum.  I am so sorry for what you and your husband are going through.  It sounds very familiar, though.  You have lots of company here.  I suggest you read the educational threads that are in the Hepatitis Resources folder at the top of the page.  That will give you an idea of what to expect.  How long has he been sober now and is he attending couseling or AA? 

You mentioned that you are "down to your income now."  What happened to SSI?  Or do you still have both?

Hugs,

Connie


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


moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 6/30/2009 11:58 AM (GMT -7)   
Thanks for the response.You know,sometimes I feel very isolated in all of this,but when I read that so many others are or have gone through what we are it helps a little. We have my income and his supplemental security income,and it is not much.I am a waitress now because the shifts work with all of the drs appt. and I am not away from home for so long. We had our own business for 15 years painting but we lost that and our house when he got sick the first time. I sound very calm about things most of the time,but this has been a nightmare.Half of the time I do not know what I am doing.I also take my mother who is 89 to all of her appts and groceries.There is just not enough time to do it all .I feel like I am being tugged from every direction. My first priority is to my husband and making sure he is taken care of. I have read all of the stages of this but he doesnt fit into any one category. He starts testing July 14 for the heart problem,to see if that can be fixed.If all goes well with that He starts the rest of thetests at unc with Dr.Hyashi in August for the transplant. His meld score is about 17 but it seems like he gets weaker everyday. I just hope and pray everyday that he stays strong enough to make this transplant. In the meantime I will try and hold everything together best I can.I don't know what else to do. Thanks for listening,it really helps.

moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 6/30/2009 12:00 PM (GMT -7)   
sorry I forgot to mention he has been sober for 5 years now and is going to counseling for 6 months because it is mandatory for a transplant if you have medicaid.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/30/2009 1:40 PM (GMT -7)   

Well, congratulations to him on his sobriety!  No drinking is the very best thing he can do for his liver.  I know that most people do not fit neatly into a single category and may have elements of different stages.  It's just a general guideline.  Is he eating much?  If he doesn't eat, he will grow weaker and weaker.  Fresh fruits and veggies, with some fish and chicken is the best.  You can also give him supplements if you aren't already.

It really sounds like you need some help.  Are there any relatives, friends, or neighbors who might be able to stay with him a couple of hours once or twice a week so that you can get out and have some "me time?"  If not, still try to sneak some time for yourself.  It's really important.  And please don't feel guilty for the feelings you have.  They are entirely normal.

Hugs,

Connie


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


bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/30/2009 7:52 PM (GMT -7)   
Moonroe, I empathize and can relate almost totally to what you are going through. I was taking care of my father up until I lost him this past December, grocery shopping, dr.'s appts, etc. in between dealing with the alcoholic bouts hospitalizations, etc., of my husband. There hasn't been time for me in a very long time. Even now, as i wait the end. Everyone says I should go out and have some fun, me time, but it's tough to frolic when ones you love are so miserable, and I'm not much company for those who are trying to enjoy themselves. Life goes for everyone around you, coworkers, friends, neighbors. They start off concerned and supportive but eventually they drift away...mental survival instincts, I suspect for their own well being. It's a guilt ridden role we have, but to do it any differently would provoke a lot of regret, at least for me. I was able to get the red cross involved with my father when he needed 3 weeks of radiation treatments and their volunteers were wonderful with him and allowed me to go to work each day and not put my job in jeopardy. There are a lot of volunteer organizations that may be able to help you out. There are still so many options for your husband's health to turn around, particularly with his choosing to no longer drink.

Hang in there and be well.

bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/30/2009 9:21 PM (GMT -7)   
Truer words couldn't have been spoken, Rick. i see that too in my husband's eyes.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/30/2009 10:22 PM (GMT -7)   
Hello Moonroe and welcome to HealingWell. Your feelings are normal. Lot's of caregivers start feeling overwhelmed with all the responsibilities that come with caring for a very sick loved one. You are not alone anymore..........you have us. I remember thinking that I just wanted to run away........I was so tired and discouraged. You really need to recharge your batteries..........Get some me time in. Even if it is small time frames.........few minutes here and there do help.

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.


moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 7/1/2009 3:54 AM (GMT -7)   
Moonroe here,Thank you everyone for your thoughts.I can not tell you how important it was to  here  from you. As for getting away for me time,I don't see that happening. There is just to much to do and I get tired of doing everything by myself. It gets very lonely. We did everything together,even working. He just doesn't have the energy to do anything.I would rather be with him doing nothing than out and about by myself. Does that make sense? I do have a question for whoever can answer it. They said his heart had to much pressure in the right side.What does that mean? If it can't be fixed they won't do the transplant. Also he has been taking propranalol for 5 years  and his doctor just took him off of it.Isn't that dangerous? I thought that it was to help keep the pressure in his blood vessels down so they would not explode again.He has had several vessels banded. Does anyone have any thoughts on that? Thanks Moonroe

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2009 12:35 PM (GMT -7)   

Moonroe, you really need to ask the doctors or even the nurses about the reasons for his being taken off his BP med.  I don't know that the propanolol would prevent a varices bleed.  But for questions of this nature, you really need to get your info straight from his medical team.

Hugs,

Connie


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


SLH1974
New Member


Date Joined May 2009
Total Posts : 7
   Posted 7/13/2009 4:41 PM (GMT -7)   
My heart aches for you. I lost my husband to end-stage liver disease on June 17th. It was such a hard time for me but I didn't have to go to work every day as you are. It sounds as though you have so much on your shoulders.

Do whatever small things you can for yourself, and do not do anything that you absolutely don't have to do. Before I knew my husband had liver disease, I was trying to do a few sales on eBay. I wish now that I hadn't and would have spent that time with him.

bessylu
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 7/14/2009 7:06 AM (GMT -7)   
SLH1974, I sure would like to hear more about what you went through. It's so hard knowing whether someone is going to make it or not and the doctors really don't tell you anything. I transferred my husband to a nursing facility yesterday, which was one of his bad days. He's not so yellow these days as he is gray with sunken eyes. He barely eats, doesn't gain weight, and the shakes and itching are getting worse every day. He was in and out of consciousness all day long...not really sleeping...but not really awake either...sorta robotic. Like I said, it was a bad day. I'd like to think it was the Dilaudin he was on for kidney stones....but 18 hours after his last dose and he was still like this.

I just want to know what to expect and if this sounds familiar with those that have recovered or those that don't make it. And for those that don't make it....what the time frame is....so we can make the best out of today. I laid awake last night...scared the phone would ring.

SLH1974
New Member


Date Joined May 2009
Total Posts : 7
   Posted 7/14/2009 8:53 AM (GMT -7)   
Bessylu - Sorry for you and your husband's problems. I know they don't want to say how much time someone has. They truly don't know exactly when.

That being said, the hospice nurse told me that when my husband was evaluated by the hospice team for acceptance as a patient, that his levels were terrible and they didn't think he would last very long. The nurse said that she kept expecting every day to hear that he had passed. He only lived 2 weeks and 1 day after he went into hospice care.

So, if you can find out the different levels that are being monitored and what the criteria is, that should give you more of an idea. I personally don't know exactly what you should be looking for as I don't remember all the details. Unless I write things down, I forget them pretty quickly.

I will talk to my daughter later and see what she can remember.

My husband didn't have kidney stones so that may be part of what your husband is experiencing. Some medicines were very hard on my husband's system and he would quit communicating. So, it is a possibility that the medicine is affecting your husband adversely.

Maybe some others can give some input as to what they think. I will write more later. ~ Sandra
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