HealingWell
Search Close Search
☰

Hi there!

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/9/2011 12:55 PM (GMT 0)
Hi there, I hope you don't mind if I join in your extremely useful and supportive forum!

I am currently caring for my husband who is 34yrs old and has suffered with Chronic Liver Disease for the past 3 years and we are now being told we are at the end of the line.  We have 2 children, a 14yo and 13mth old and I just wanted somewhere I could go to get advice and know that I am not alone as most days that is the way I feel.

My husband's disease is cause by alcohol abuse and he did stop drinkng for 2 years until he was told that things weren't really improving so he started having a few beers again until old habits started up. He has stopped drinking for periods of time but depression and anxiety and pain would set in and the cycle would start over.  At the end of last year he got really sick and 6 weeks ago I was told that he has signs of end stage liver failure.

He constantly has bleeding gums, bleeding for the ear, jaundice, blood shot and yellow eyes, very weak and tired, hardly eats and extreme cramp like pain in the liver area.  He also complains of having pins and needles and lack of feeling in his legs and arms and constantly has the tremors & vomitting & a constant headache.  He doesn't really have much signs of confusion but more blank spots of memory where he can't remember a conversation for example. Blood tests done last week shows platelet levels at 16000 and ammonia level at 142.

As you are all aware it is a horrible and sad illlness and he refuses to goto hospital and wishes to stay at home so I am trying to prepare myself as I have little knowledge and also my 14yo son as we are slowly watching this disease killing him. The doctor said we would be lucky to have another 2 months with him but that is just a guess on his behalf.  His platelet level dropped 10000 in 2 weeks.

I am sorry to go on but if anyone has gone through this or going through this are can offer any advice as to what is to be expected and roughly how long we have left with him I would greatly appreciate your knowledge and advice.

Thanks again

Kriland

Victoria, Australia.

Posted 3/9/2011 1:10 PM (GMT 0)
Dear Kriland,

Oh, if only, if only, if only....

He/you/the kids are going through a really really sad time. Your doc is right, his days may be numbered.

They told my hubby the same thing last fall, that he wouldn't see Christmas with the condition of his liver and all his side effects. IF...he didn't quit drinking. Quitting had never been an option before, but "if you drink, you will die NOW", did the trick. He hasn't had a drop since. Don't let me pretend he is a well man, but the side effects are much reduced and here it is almost Easter and he is still with us. He has no ascites. He isn't throwing up all the time. He isn't bleeding in his stool. He doesn't have pain. No chills and fever. His platelets went from 47 to 100!!!!!

They have put him on the transplant list and tell him his sober living. reduced fat/salt/no beef diet, and lots of medicatons have him stable enough to wait for a liver!

He has passed from the dazed and confused state, through angry and beligerent, to sad and depressed. I'll take depressed over beligerent any day! I think that is a combination of sobering up AND hepatic encephalopathy. He takes the lactulose and Xifaxan for that. Great stuff!!!

This has been horrible, but here we are ....with hope at the end of the tunnel.

Not sure what they do about transplantation in Victoria, but there are several other Aussies on this forum and they will likely chime in.

WE have several caregivers who are looking after hubbies/partners who have chosen to continue drinking and die "Happy". Actually, not so happy, but they must figure life without booze won't be worth it.

Maybe Rick will post. He has had several "extra" YEARS added to his life by cecessation of alcohol. He is our idol at this point...the example that shows my Mike CAN do it.

Good luck to you. You will find a lot of support here. Keep coming back. Let us hear how things are going.

Carol aka Mama Lama
Posted 3/9/2011 2:28 PM (GMT 0)
Gosh Kriland,

Your husband sounds a lot like mine...He did stop drinking once a year and a half a go after a trip to the ER and stayed quit for about 6 months. Then he started feeling better and he started again...BIG mistake! He has all the same symptoms as your husband, however, unlike you, I am not getting any answers from his Physician as to a time frame. Does he have the ascites (swollen belly) and portal hypertension? If he has had an ultrasound, they would be able to tell you....I know where you are and I feel for you....Just keep trying...never give up....I keep our house stocked with fresh fruit, veg, and things he needs to eat, when he will...I tell him I love him every day and when timing is right, I tell him I sure would love to have him for the rest of my life....I don't constantly say "you need to quit" "you need to quit" because he backs away and gets defensive...so I find ways to try to get through to him...You know your husband better than anybody so you know how to be strong and try to get through to him in your own way...Never let him give up!

BTW, I wasn't going to say anything to the rest of the members yet for fear that it may not work out, but my husband did NOT have a drink last night for the first time in a year and a half....He did it on his own, and actually asked me to help him get healthier which I was thrilled to hear...BUT, I only think he's doing it because he is feeling so sick......BUT for whatever reason, I don't care...so see Kriland, call it what you will, divine intervention, or just his sickness causing it, but either way if he's trying, that's a blessing! Now, quitting permanently is the key!

Hang in there and we will pray for you! Do the best you can and that is all you can do. Just know you have support here as this site has been a Godsend for me!!!! Take Care!

Posted 3/9/2011 6:28 PM (GMT 0)
Yes i agree this site has been a god sent. My BF has hep c and got it from using needles with herion. He is doing a trial treatment for the first time and has 11 1/2 years clean, thank god for recovery. I know what you mean when you say you feel alone. I felt that way to till I came to this site. They have not only giviin me good advice but also let me know I am not alone out there. We do meetings all the time but since he started the treatment he has backed off alot. This makes me scared for him to disconnect himself from recovery. We have stopped doing alot of things together that we use to enjoy now its just one day at a time for both of us. Not really knowing if its gonna be a good day or not. How I feel for the day usually revolves around how he is doing. I try to keep active in my own recovery and do meetings as much as possible when Iam not with him. I am also a reocering speed addict, I will take 7 years this June. I thank god that I never used needles to get high and going thru this with him I know I am really grateful for that. Just remember if he is feeling withdrawn its not you or at least they keep telling me that on here and that has really helped me out alot. I really believe me higher power is looking out for the both of us and I pray every day and ask for god help with understanding and patients  and for the most part praying has been helping for me any ways. Take care and you are in my prayers stephanie
Posted 3/9/2011 7:34 PM (GMT 0)
Kriland, welcome to the forum! I'm so sorry that your b.f. started drinking again. When the doctor said, "No improvement" he should have added that he could still prevent a downward spiral if he would not touch alcohol. Rick has done just that...and ML's and HealthyNow's husbands are doing the same. The progression CAN be stopped if he does not drink and follows a healthful diet (low salt and no beef plus inclusion of fresh fruits and veggies and low-fat foods.)

I suggest you read the information in the folder stickied at the top of the page entitled Hepatitis Resources. It is not just about viral hepatitis. It includes the stages of liver disease and addresses the question, "When will he/she die?"  Also read some of the posts in the Caregivers Sharing thread, also sticked at the top of the page. You will learn a lot by reading those informative threads. Also feel free to post in the Caregivers thread, which is meant for venting and support.

I hope your husband decides he wants to live and fights to make that happen. However, if he continues to drink and shows no interest in stopping drinking, ask the doctor for a hospice referral. The nurses will come to the home and assure that he doesn't suffer, so he won't have to go to the hospital. Hospice usually gets involved when one has 6 mos. or less to live. If your husband continues to drink, he will likely fall within this time frame.

Hugs,
Connie
Posted 3/9/2011 11:18 PM (GMT 0)
Thankyou everyone for your replies.

When my husband quit drinking 3 years ago they did put him on transplant list and ALOT of various medications.  He was going pretty good but until he got an infection in the leg which then distroyed the cartledge in his anke and the bones in his foot and leg.  They could not operate because of his health.  He had ongoing pain and couldn't walk properly let along play footy with our son so I think that was the start of serious depression leading to drinking again.

Since he has started drinking again he has stopped all treatment and come of transplant waiting list, he doesn't take any medication at all apart from painkillers when it gets really bad.  Because he is refussing treatment I can't use hospice so pretty much on my own.  He just said that he is tired of fighting and tired of living.  In the past 2 months he has gone down hill so fast.  In the last month he would be lucky enough to have eaten one good size emal, thats it apart from beer

I think the hardest part is that apart from seeing him in all this pain and seeing him cry and me feeling so helpless is the mood swings.  He could be sitting there quietly one minute and yelling about something on the TV or the noise our baby is making with her toys or telling me I'm hopeless.  I know he doesn't mean it and apologises in tears later on when I tell him what happened but it is still so hard.  He has never been a angry person and this is so out of character and I know is to be expected but every night I cry to sleep wondering how long I can actually do this for. 

His patelets sitting at 16 and ammonia levels at 142, can anyone tell me what levels are life threatening?  He is extremely jaundice and minimual urine output, heavy sweating and holding fluid in his stomach and legs.

Thanks again for listening, I appreciate being able to vent  :-)

Posted 3/10/2011 12:27 AM (GMT 0)

Kriland, that doesn't make a lot of sense about not qualifying for hospice.  They only take on patients who are no longer receiving treatment, except for palliative care (pain meds and the like.)  Is it because he won't see a doctor to get the referral?

His platelets are very low and his ammonia score is high.  The elevated ammonia probably has a lot to do with his anger.  He should be on Lactulose to draw the toxins out.  He probably has a low clotting factor, which means if he has varices that rupture then he could bleed out.

Given that alcohol is a depressant, he only made matters worse by drinking.

Perhaps others here can give you more information and support.

Hugs,

Connie


Posted 3/10/2011 5:27 AM (GMT 0)
So sorry that you are going through this but glad you have the courage to reach out... please take time for yourself... please step back... plan ahead... put things in order that you can... take a deep breath... and do it often.. find what you can to regenerate... think of your child... and think of yourself... while caring for your loved one... it's a huge task... but taken one step at a time... is doable.... my thoughts are with you surely this day.. Sandi
Posted 3/10/2011 2:50 PM (GMT 0)
Hello Kriland and welcome to HealingWell.  So glad you found us.  Lot's of us have been in your shoes so you are in good hands.........

I am sorry that your husband is in such poor health.  Try to enjoy whatever time left that you have together...........I'll be praying that he decides to quit drinking again and will start fighting to live again.......I breaks my heart that he has given up at such a young age.........my son is older than him and as a mom I would give him a quick kick in the seat of the pants for giving up...........but that is a mom speaking........I didn't use that tactic with my husband.........I tried using quilt........I told him that it was okay if he wanted to die sooner than latter.......but if he did die sooner because he didn't want to fight than I would not help our 2 granddaughters remember him.......that at 2-3 years old they would not remember him.   Sounds hard but I was desperate..........I used anything I could think of to try to get him to stop........When I finally gave up .........he did it on his own.......

As you see we have a wonderful forum with a great group of people here.........

Thoughts and prayers.......... 

 

Posted 3/10/2011 5:08 PM (GMT 0)
Kriland,
I know this is probably one of the hardest things you have ever gone through because I know it was for me. Trying to help them when they won't receive, pushing and they push back, and talking, preaching, and yelling at times and they don't listen. I did it all and I hated every moment of it...And mine is not over either. Mine has gone without a drink for a couple of days but we're far from out of the woods....I go to the point where I had to say, I've done all I can do for now.....I stayed by him and waited and waited and waited. Everybody else here on the forum was moving on with their lives because their husbands had quit, were trying to quit, and were looking forward to better or more healthy days/lives. And I sat and wondered, why will he not quit! But there was still nothing I could do because it is up to him! And I've learned that this is what it's about.....you are there to support and love him,but you cannot help him if he won't help himself. And you have to learn to be ok with that so mentally and emotionally so you will be ok for your kids. There were days that he was complaining that he felt bad and I just had to walk away. What was I to say or do?? There was nothing I could do....no medication was going to fix the problem and I couldn't make him well or make him stop hurting. And I still sit in our living room knowing that even though he's trying to quit, I still can't make him well or help his hurts that he has caused for himself. SOOOOOO, like Sandi said, think about yourself and your kids more when you can. You have to stay healthy in every way to take care of them, yourself, and him when he needs you. Take it one day at a time or you will be so overwhelmed that you will not be able to function!
Take care and we are here for you...Again, I can't say it enough, this forum was the best thing I ever found to help me get through this and I think you will find that if you put your thoughts on paper, like you are, it is some of the best therapy you can receive!! :)
Posted 3/10/2011 9:05 PM (GMT 0)

As a sober alcoholic, I just want to reiterate what others have said:  He/she has to want to stop and put forth the effort to stay stopped.  Doing it for someone else will not work...it may for awhile, but in the end he will relapse because it has to be his goal for himself alone.  This happened with my ex.  And threatening, making him feel guilty, etc., definitely won't work.  Same with cigarettes.  I had to stop when I was ready and not when someone was on my case about it.

Quitting is a big lifestyle change and other things have to replace it.

Hugs,

Connie

Posted 3/10/2011 10:46 PM (GMT 0)
Take care of yourself - you can't change him - you need to think of yourself and the children. I know you love him (who else could put up with the mood swings) - but if he won't help himself - you can't do it for him.
I'm so sorry for the pain you're feeling.
Posted 3/10/2011 11:18 PM (GMT 0)
Emma, when something has been such a big part of one's life, you have to find something positive to replace it:  Start a blog, learn to knit, start running, learn a new game or sport.  If too sick for any of this, one can still change behaviors that are associated with drinking.  For instance, you threw out the cocktail glasses.  You might also replace the booze with juice or sugar-free soda.  It's not important what you do...but it IS important to find ways to replace the gap that not drinking leaves.   wink

Hugs,

Connie

Posted 3/11/2011 1:50 AM (GMT 0)
Thankyou all SO much, I thought I was going crazy until I found this site. So many people around me just have no idea what it is like. I am very lucky to have such a wonderful family but seriously they don't understand and I know this sounds so selfish but when my sisters or parents visit it takes all my strength to actually have a normal conversation because I feel like my life is so different to there and when my sister complains about her uni and her work load I just laugh to myself because I would love her work load!!! My husband (Ben) has got so much worse the last couple of days and now he has stopped drinknig because he physically can't! The doctor visited this morning and said that the toxins are building in his system and now his stomach is like a balloon and looks like any second it will burst! The blood vessels in his face have burst last night so he has a swollen face with black eyes. It is so cruel to watch and I feel like I am turning into a robot. I am constantly trying to carry his to and from the toilet unless he sleeps through it and then I have to change the bed for the fourth time today, emptying the bucket all this time becasue of the vomitting and cleaning the blood from his mouth, nose and ears as it just keeps coming! I then feel so guilty when I sit and think I wish this would end because I know that means he has to die for this to be over but I just can't help myself. I am only 30 with 2 kids, a 14 year old who is not accepting this at all and thinks Dad will just get better like the other times and a 1 year old little girl who wants my constant attention and doesn't understand why Dadda can't play anymore with her and the only memories of him will be the ones I tell her or the video/photos we have. Thanks all for letting me vent and you are right it feels better to get it out xxx
Posted 3/11/2011 2:32 AM (GMT 0)

I'm very sorry that you and the kids have to go through this.  Him...not so much...  because he could've lived but he made the choice not to.

Hugs,

Connie

Posted 3/11/2011 2:48 AM (GMT 0)
Does he have any family that might come help you a little? Parents, brothers, sisters, friends?? What would he do if you called 911? Would he refuse to go once they were there? That might be a break you badly need....Just a thought......I feel so bad for you.....
Posted 3/11/2011 2:52 AM (GMT 0)
kriland, i am sorry that you and your family are having such a difficult time. as hard as it is, you must take care of yourself. be well and stay strong. prayers to you and yours.

emma
Posted 3/11/2011 5:58 AM (GMT 0)
I got ambulance to take him to the hospital last week and the doctor bluntly told him what would happen if he didn't start getting treatment so he dischardged himself! The doctor at the ER was so rude to me though basically saying well why did you even bother bringing him. He signed a form when the GP came round stating he declines all further treatment and does not want to be taken to hospital, now we just wait. The thing that I hate the most is I don't know how long he will go on like this or when we know its close to the end which makes it hard to prepare. His family are all alcoholics as well and are useless. His mates don't come round much now days and when they do it doesn't seem to help much. The GP did say today that it is ESLD but with his syptoms can anyone give me any indication how long this could last for, doctor said up to 2 months but he didn't really know? Thanks everyone, I feel so much better after I chat thankyou
Posted 3/11/2011 9:21 AM (GMT 0)
Hi kriland This is Karen wife of Michael Kelly ,I'm going to give you a summerised form of Michaels details from last year.
May started off just like every other month (on the drink) on Monday the 11th May I noticed he had gone not gone to the toilet after 2 or three litres of wine eith ice in it .By the following Monday the 18th he was in hospital on morphine pethadine and codine .His legs and stomach had swollen to three times his normal size .Was on death watch catagorie one patient. May and June both passed with him being in hospital ,his skin and eyes were yellow ,he was swollen like a balloon and had alcoholic hepatitis,.He describes Jul & Aug as 2 more months of ruthless agony and the following 3 months of just misery.He still has numbness in upper left leg and cramps but they are manageable ,he also had no feeling in his upper right shoulder ,.However since early Dec he has improved dramatically.He hasn't drank but even still he can't walk over 200 metres without having a 10 minute break.,and he realises that life will never be the same as it once was .Initially he lost around 40 kilo's and was skin and bone .The meds have steroids in them which have built him back up a little.Looks a lot better now he just turned 58 back in Feb .He should be using Lactalose this is VERY important it cleans the liver of toxins which otherwise go to the brain causing confusion and the black spots in his memory .Michael has bled from the nose and gums but never the ear,/Confusion and black spots were aparent before prof Veysey put Michael on Lactalose .Does he get blood bruises(easily) ? Take care he really needs to see a Gastroenterologist or similar .tTake care our thoughts are with you.Karen
Posted 3/11/2011 11:35 AM (GMT 0)
((((hugs)))) from another aussie. Your hubby is so young, I hope with every bit of my being that he is one of the lucky ones that improve when things seem like they can get no better.

Have you had contact with a social worker from the hospital at all?? Has Pallilative care been mentioned to the both of you? there is help out there for you both you just need to know how to access it. I work for one of the major Cancer Councils here in Aus so I can give you a hand on finding support services for the terminally ill if you would like me to.
Posted 3/11/2011 6:13 PM (GMT 0)

Kriland, nobody can really tell you how much time he has left.  It's such an individual thing.  We have a few people here whose loved ones have lived for years, with various crises which made them think "It's time," but they bounced back.  I CAN tell you, though, that if he drinks the time will be MUCH shorter and the crises worse.

Hugs for you,

Connie

Posted 3/13/2011 10:20 AM (GMT 0)
Thankyou everyone, I appreciate it so much. It's so nice to be able to chat to others who really do know what you are dealing with. So glad I found this site!
Posted 3/13/2011 11:06 AM (GMT 0)
You can't do this alone you need help hospice care......ur burden is hard to imagine....I thought mine was near unbearable.....you have to know when to take care or urself and kids....seek outaide help...a nursing home something... this is much for one person.....I will be praying...and wanting it over is normal....sandi
Posted 3/13/2011 11:58 AM (GMT 0)
Thanks Sandi, sometimes I just feel so guilty snd the last 24hrs he has had severe liver spasms/cramps and I have no idea what this means but it can't be good. Also losing control of his bladder so I am continually changing him and the bed! Hospice said they will help when I need them but our GP said it's really hard because he is refusing reatment which could isolate some of the problems. As for a home, he begged me not to do it to him and as he still has he's wits about him I just couldn't. Also I think the sounds of the kids keeps him fighting I just wish he got treatment that's all. He has even signed a form to say no hospital treatment so I can't even just have him addmitted for 24hrs for a break! Thankyou though, at least this sight allows me to vent :)
Posted 3/13/2011 2:18 PM (GMT 0)
Kriland,
Just reading your posts makes me sad...Mostly that you don't have any help and with little ones too...
I don't know how to say this any other way so here goes.....Is there any way to have him deemed incompetent? Since he is in so much pain and obviously out of his head IS it possible to get him admitted and held there? I know this sounds cruel and I don't mean it that way at all, but if it's your only option, I wonder if it's a possibility?? You don't have any choices, that's what makes your situation so bad...and with your little kids seeing all this. I know you feel guilty for them and that's terrible because you're not the one that should be feeling all this guilt...
I may be totally wrong on this but I thought it was worth a shot....
Anybody else with thoughts on this???
✚ New Topic ✚ Reply
12