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Posted 1/26/2009 2:02 AM (GMT 0)
Hi. everyone.  I've read the postings and they have brought me some comfort. My husband was diagnosed with hep c years ago and also cirrhosis of the liver. Of course what cannot be seen,tasted, or touched it did not exist, he continued having his beer, around Sept 08 he was tapering them, but not stopping. On Dec 30,  I took him to the emergency room, to make a long story short, two veins ruptured and we had no idea he was bleeding internally until that day. He bled out, was given emergency endoscopy and two bands were but on.  The doctor gave us a 50 percent mortality rate with what happened. He made it through and on Jan 2, a tips procedure was done, and that was also a maybe he will survive procedure.  A total of 11 units of blood and I have no idea how many plateletts were given to him and a 10 day hospital stay. My daughters and I lived at the hospital. It wasn't until a couple of days ago that I called the doctor and said he was still tired.  It was at that time the doctor laid it on the table which no one had done before.  My husband is at the end stage of liver disease, he is not approved for transplant and he does not(or pretends) that he does not know. I made the decision not to tell him he is dying and my girls wont either. He is the type of man that must have a reason to live and that is the girls and me. He will fight all the way instead of giving up. It is extremly hard and soul wrenching to watch him tired all the time and yes I'm doing everything that he used to do and this makes him angry. I just tell him that it's from the procedure and that he may always be tired, but that it is ok...he is here and that is what matters to me. I cry by myself and that is the hardest to do and to not be able to speak my fears.  I've gone through the angry stage because he kept doing this to himself after begging him to stop drinking that he had us to live for and himself. It scares me to think of what he is going to go through, of how lonely and lost I will be without him. He is the other half of me and I'm so scared.  It's given me comfort finding this site and reading everyones stories. Not so different from mine and knowing that I am not alone. At this point I am trying to talk him into retireing and collecting his social security, it's acutally perfect timeing as where he works are laying off and while he would not be laid off this is the perfect time for him to leave.  I am hopeful that I can convience him and to save his energy for when I get home to talk and so on. The tips has been a miracle for him and yes, no doubt has prolonged his life.  We may have months, or a couple of years and we have good doctors and god, So while  Thank you for being there and listening. I know I  have gone on and on...but as I said I'm a bit lost and scared.

 

Posted 1/26/2009 2:18 AM (GMT 0)
((((Mo719))), I am so sorry that you and your family is going through this.

It breaks my heart to hear such a familiar story. It's what brought me to HealingWell. Desperation and an acute loneliness. I too had to keep up a front and had no one to talk to that understood.

I am happy that you have found us. Has your husband been evaluated for a transplant? If so, why was he not approved? Most alcohol patients are routinely denied until they go to AA or some sort of counseling for a period of time. My husband was denied the first time and then approved the second time.........but by then it was too late for him......his liver cancer had grown too much and they took him back off the list about a week later.

Take care.........thoughts and prayers.........
Posted 1/26/2009 2:24 AM (GMT 0)
Hi Mo,
Welcome to the forum. I'm sorry you are going through this. I think it's important for you to be able to talk to others about this. Maybe you could check & see if there is a support group near you. My support group saved my sanity. They understood what I was going through. i wish I could be of more help. I'll keep you in my prayers.
Cindy
Posted 1/26/2009 4:06 AM (GMT 0)

Hello, Mo, and welcome to the forum.  You will find our members very understanding of what you are going through.  As a liver patient, I find it so frustrating when other patients stay in denial...when getting to acceptance and taking action can be lifesaving.

All liver patients have fatigue.  It is the main symptom of hep C, and what got my doctor to test for hep C.  As your husband's health declines, he will realize what is happening.  Please do try to get counseling or a support group for yourself.

You are always welcome to vent here, and please do keep us updated.

Posted 1/26/2009 12:25 PM (GMT 0)
Mo

Wanted to add my wlecome to the forum. I am so sorry that you and your family are having to deal with this difficult disease. This is a wonderful place to express your feelings and not feel so alone. I know for me it was a relief to meet others that were dealing with the same problems I was and that what i was experiencing was "normal" in my abnormal world. I agree that you should check into support groups in your area. Keep us posted.

Lucy
Posted 1/26/2009 2:14 PM (GMT 0)
Mo, hi and welcome to HealingWell. As you can see everyone on this forum has a similar story so we can all relate. The most important thing I think is to take care of yourself first. You will not have the energy to care for your husband if you are completely wiped out physically and emotionally. A support group of some kind is a way for you to vent, become more educated about what to expect, and an avenue to reach out to others that understand what you are going thru. I can tell you that this forum did that for me but if there is an actual group meeting I think it will be even more of a benefit to you. Dealing with the anger and disappointment is often the hardest for the family to cope with. To move beyond that (as much as possible) is a real challenge. You'll have to immerse yourself to some degree in becoming educated about the disease and what is to follow medically for him. You'll need to know signs and symptoms and the progression (stages) of liver disease. It helps to know what you are up against and what you can do to help him. Dealing with impending death is not something any of us want to face let alone actually confront head on I know. But, in reality it is a remarkable healing mechanism. What may seem quite impossible right now becomes possible as time goes on. Caregivers do not give themselves the credit they deserve or the energy required to heal themselves. Try to address each problem as it comes rather then dwelling on what might happen tomorrow. Take time for some laughter, picture taking of the family together, and enjoy whatever time you may have together. NEVER EVER give up. Vent your frustrations here on this forum because we all understand what grief is. Plus, it feels great to dump all the pent up fears and anxieties. GOD bless.
Posted 1/26/2009 6:29 PM (GMT 0)
Thanks for a wonderful post, Shelly!  :-)
Posted 1/27/2009 2:50 AM (GMT 0)
I just want to say thank you to everyone. Your responses were heart felt and much welcome. As for the transplant two doctor's have said it is not an option. Maybe it was because he kept drinking, I intend to ask on Feb 3 when he goes for an endoscopy to see if there are any more bleeders and in general how the tips is working. He has the first ultra sound with doppler tomorrow and I'm praying that all is going well.  My husband is a wonderful man, a giving person but he just would not leave the beer alone, even after being told he had hep c and which of course developed into liver disease. He has had this apparently for years. It wasn't discovered until 2003 when he was sent home from training for Iraq. He was pulled back from retirement and reinstated and had to retire again when they thought he had diabeties, which he does but after researching I'm sure that is was brought on by the liver issue since it was discovered about the same time.  The are pretty sure it was passed on through birth his mother died in the late 40's from jaundice,which they are pretty sure was hep c. I wish he were the type of man that could handle discussing what is going on, and deep inside I'm pretty sure he knows. Bus as I said, he is the type to have to have a reason to live and if he knew there were no hope he would just give up. I've become all to aware of the stages and it looks as though he missed a few by the bleedout. He went straight to  the banding and then the tips procedure instead of the draining. It's stange how people take things in and how brave they are until it really hits home. When he was first told the famous we all die sometime was said. Then on Dec 30  it all broke loose what pulled him through besides God and a great emergency team, was not wanting to leave me, he said that I needed him.  In truth I do, but  I will survive, there is a  lot that in 20 years I've gone through but ultimatley I love this man and it's so hard to watch. I'm sorry, if I repeat myself, in the forum...but my thoughts are all over the place as are my emotions. This is not going to be easy I know that, but reading your story's and having support helps.

Mo

Posted 1/27/2009 5:06 AM (GMT 0)

Mo, it's true that your husband would not be considered for even being evaluated for a transplant unless he has 6 mos. of sobriety, evidenced through AA meetings or some type of alcohol counseling approved by the transplant team.  I assume that he has finally stopped drinking now?

If he has to use denial as a coping mechanism, so be it.  However, as I said, it will at some point become obvious to him that he is in end-stage liver disease.

You continue to have our thoughts and prayers.

Posted 1/27/2009 5:55 AM (GMT 0)
Mo,

Welcome to the forum. I've been told that if it weren't for me, my husband would already be dead by now. The family showers me with credit for taking such good care of him and fighting to get him a transplant (he was finally transplanted Jan 21st). They say, "You never gave up even though everyone else did".

The way I see it, I do what I do for selfish reasons. My husband's love has always been my source of strength. He is the only human being that I trust completely. I'm not willing to give that up without a fight. I actually feel guilty for pushing him so hard to press on when I knew he was tired and ready to give up.

As Shelly mentioned, educate yourself on your husband's condition. Symptoms manifest themselves in no particular order. My husband nearly died in March '07 with esaphageal varies--4 bands initially. He spent a week in the hospital that month. The saline drip caused him to retain fluid (ascites) for the first time. This was brought under control with diuretics over the couse of 2 weeks. He had to return in April, May, and June of '07 for an additional 6 bandings before the varices were brought under control. We didn't have anymore trouble with ascites until mid 2008. Not only did his abdomin swell with fluid, but it became transdate through his diaphram into his chest cavity collapsing his lung (plueral effusion). He has had the fluid tapped from his chest (thorasentesis) multiple times to resolve this. The diuretics would slow the process down a bit, but was not affective on the volume of fluid that was accumulating.

Don't give up on getting your husband the help he needs. Drag him to AA and get his attendance documented. If you can't get one transplant center to list him, go to another. God forbid it he does loose this battle, at least you will have the peace of mind that you did everything you could do to help him. No regrets.

Chin up! God does not put more on us than we can carry. You're in my prayers.

Penny
Posted 1/28/2009 1:40 AM (GMT 0)
Welcome to the forum MO. I agree with Penny. Don't give up. Doctor's can be really harsh with people if they know that they continued to drink. I don't know all of the circumstances but it could be possible for your husband to be listed if he attended AA meetings and had several months of sobriety. My husband also just had the TIPS procedure. He experienced a severe bleed in his stomach in November that he almost died from. The TIPS procedure was done about two weeks ago. He has started complaining about more fatigue lately also. I wondered if the procedure had anything to do with this. So far the encephalopathy has been managed by the Lactulose. I can totally relate to all that you have said. I have had the same thoughts and emotions. My husband and I are in are 40's, and I am still hoping for many more years to come. Your story touches my heart. I'll be praying that your husband makes the transplant list.
Posted 1/29/2009 12:54 AM (GMT 0)
I'm sitting here feeling so blessed that I have found you all. I have read all your replies and you give me hope where before there was none. Your right... instead of accepting I need to fight this and to get him on the list some how. I need to get him to go to the AA meetings and get him documented. The only problem is he never has and still doesn't consider himself having had a drinking problem. Granted he has not had anything to drink since Nov of 08, which was before his episode on Dec 30. I will get his doctor to talk to me as to the why nots, and if that is the only reason then it's not good enough, I will get him to the meetings. If that happens then it just is if we have time...he is doing remarkable well, no swelling, no memory or confusion thanks to the medicine. He has a will to live and that is half the battle, I've just got to do this in a way that he does not find out that he is so close....it is up to me to get him to see what can be not just what is. You bring me to hopeful tears, thank you... each and everyone of you.
Mo
Posted 1/29/2009 3:00 AM (GMT 0)
Mo, we are very glad to help.  Perhaps you could tell him that there's a possibility he might need a transplant, and about their AA requirement of 6 mos....so he may as well get started "just in case."  I've been sober for 22 1/2 years, thanks to AA.  He doesn't have to speak if he doesn't want to...just listen.  If he is asked to introduce himself, he can just give his first name but doesn't have to say he's an alcoholic...or he could even say he'd rather not give his name.  It's up to him.  At least half the alcoholics in there are in denial and the other half think they can learn to drink successfully (no way.)  There are different types of meetings:  Discussion meetings, Big Book Studies, Step Meetings in which one person gives their interpretation of the steps over about 10 weeks and everybody just listens at those...though they're usually just once a week and the transplant office may want him going more often than that.  I was told that if you drank every day you need to go to a meeting every day...not easy to do.  I went about 5 x a week for the first 5 years or so.  Anyway, much luck in getting him there and if you need to know anything more about AA, you can e-mail me (the address is in my profile.)  wink
Posted 1/29/2009 2:57 PM (GMT 0)
Hi Mo, When they required my husband to go to AA. He had to go I believe to 20-25 meetings.... His transplant center didn't care if he went once a week or 7 days a week. He started at once a week and ended up liking it, he then would go 2-3 times a week. He even went after they took him back off the list and didn't need to go.......For fighting against going at first, he ended up loving it. What I am saying .....is if he ended loving it others who don't think that they need it or don't want to go may end up loving it too.

Hang in there..........as Butterfly says......there is always hope.

Thoughts and prayers..........
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