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Posted 10/10/2010 8:06 PM (GMT 0)
Wow!  Already had to start a new one.   Hope everyone's doing okay.  
Posted 10/10/2010 10:33 PM (GMT 0)
Healthy Now... in regards to your question about partner's and sobriety... I as never one to tell a man when to drink or not to drink... finally one day I had just had enough and I broke all my own rules... and gave Mike the ultimatum... and I absolutely told him there would be no more alchohol in the house...and no more drinking... and no more going to friends that have booze... and I honestly thought that he would leave cuz that was the choice I gave him or that I would leave... and he just DID it... amazing.. he did have a slip.. but that sobriety gave us a afew years of a much better quality of life...and this was just our story ... and it was more that I was fed up and told him I wouldn't live that way anymore... he just did it... I was amazed... but everyone has a different path with this.. and I think the AA way is the best way...although my trail that was has been Alanon.. that's all I have to offer...reminds me of when I was in training for sales when they said if you never ask for the sale it can never happen... I was always too afraid of losing him if I put my foot down.. and have been a "traditional" person... was simply amazed when he did it... knowing that this is not the case with many... Sandi

Posted 10/12/2010 12:41 AM (GMT 0)
Hubby got through Sunday AND Monday. He's gone to bed to watch a football game as TV in the living room or patio mean TV and booze...or more specifically Monday night football and booze.

We went to the grocery store twice today...just to pick up a few things. Here in FL they sell beer and wine in the grocery stores, so that is always a challenge. They put the wine in the BREAD isle. Biblical, no? Bread and wine! If they put the darn stuff by the cookies or ice cream, it would be easier to walk by with no pangs. He likes to get out of the house for a bit and has done the shopping and cooking for years, so this feels like a pretty normal activity for him, even if he's not driving just now.

We got CT scan results today from last Thursday this morning. Though they found fluid around his liver, there WERE NO TUMORS found. The best news all month!

He's cranky tonight and his feet and ankles are so swollen, so he is by no means GOOD. He has gained 13 lbs in 2 weeks...I think it is mostly fluid.

But it is the same weeks he has been alcohol free. Does that go together? Or are they two different syndromes? I also notice that his SWEET tooth has eased off. He started buying and eating bags of candy...gum drops and red licorish and jelly beans. Thank goodness stuff I don't like. That has stopped. Maybe that is from coming off the booze too.

He ate good meals the past two days...more normal, pasta today and some chicken and rice yesterday. So that's good. I think.

One day at a time. Day 14 was a good day. MamaLama
Posted 10/12/2010 1:08 AM (GMT 0)
Congrats on day 14 Mamalama-but even more congrats on NO TUMORS! I know how happy that made me last week. A big sigh of relief. Glad to hear that your man is eating. That is what my husband's doctor stressed. That he has to eat. Maintain strength. Heal the liver via nutrition. He hates me pushing all the food and ensures and waters on him. But I tell him I need him well. He has to eat. He is too important to me. I don't care how much he complains...I just keep feeding him!

I agree, I am taking it all one day at a time...that is all I have the energy to do.

Take care all and God bless.

Emma
Posted 10/12/2010 2:04 AM (GMT 0)

ML, it's great that there are no tumors!  Also great that he watched TV in the bedroom.  That's the idea--not to be in places where he normally drank.  As for the candy...it's actually recommended to eat sweets when first coming off booze.  It helps, as alcohol is high in sugar.  It really sounds like he's doing the right things.  You know, even today, with all the sobriety I have, I still rush past the beer and wine aisles (I'm in FL, too.)  Even some grocery stores and drugstores are selling hard liquor now.

In answer to your question about the swelling, it has nothing to do with coming off the booze and everything to do with his liver disease.  Has he been put on diuretics yet?

Hugs,

Connie


Posted 10/12/2010 2:22 AM (GMT 0)
Yes, Connie, water pills for over a year. First as needed and then every day.  He takes a lot of stuff.  Beta blocker for the hepatic hypertention, the lactulose, diuretic, antiacid for the varices, cholestyramine for the itching, and enzymes for the malabsorbtion (he has that since 2003 Inteferon...if he doen'st take the enzymes, he just borrows food for a few minutes!).  And a lot of over the counter stuff...cranberry, milk thistle, vitamins, and acidophilus.  From what I read, it seems like a standard regime.

Went to the lawyer today to make sure medical power of attorney, dnr, etc were all set for Florida.  It seems our pre-retirement paperwork isn't exactly right. In CT and NY, the will, etc does not require notarization. But in Florid you do. Everyone should make sure their caregiver has the right paperwork for the right jurisdiction for when the time comes to need it!   

I slept myself half the afternoon today, I'm so exhausted from all this. Maybe all this talk of DNR's got to me.  Good thing I'm retired and have some time.  I do a lot of volunteer work, but have to pull back during times when he can't be home alone or needs to go somewhere.

Night all, ML

 

Posted 10/12/2010 3:28 AM (GMT 0)

ML, you make a good point about making sure to have the right paperwork.  Did your husband (or perhaps you'd be the one if you have POA) sign a Florida Declaration also?  It's based on the Florida Life-Prolonging Procedure Act.  This states that you do not want food or drink administered if you are in an unconsious or terminal state. 

Hugs,

Connie

Posted 10/12/2010 1:00 PM (GMT 0)
Thanks for all the support.  Starting a new week. I start with my own counselor next Monday. 

Holding good thoughts especially  for Emma and her man.  cool

ML

Posted 10/12/2010 5:54 PM (GMT 0)

Emma, do you take vitamin C?  I'm a firm believer in it for boosting the immune system.  If you already take it, double up on it.  It's water soluble, so anything your body doesn't need will be eliminated.

Hugs,

Connie

Posted 10/13/2010 1:08 AM (GMT 0)
Emma...just so you know.  My hubby has been 30 years at this.  Diagnosis, bad times and good times.  We are having a real bad time now, and our good times may be waning, but the docs put him back together a number of times when I thought all was lost! 

Day 15, hoo Rah!  Dry as a bone here in MamaLama land.

 

Posted 10/13/2010 3:43 AM (GMT 0)
Emma--Hubby will be 61 in November! And sober 15 days.

Daily drinker since teen times. Same as you, we'd have some cocktails in the evening. But he had acquired Hep C early and that was the start of his liver problems. He has been a heavy drinker so long as I've know him...31 years. He quit for a year while he went through a treatment regime. He has cirr and hep c and pancreatic insufficiency and aortic stenosis and arthritis and a half blocked carotid artery and an enlarged prostate and all kinds of skin cancer. For a young guy, he is a mess.

In the last months the drinking had accelerated. A lot. We went away for a weekend in early September and he started in one afternoon and I think I counted 10 gin and tonics before he passed out. And that continued every day until he crashed, bad.

And in a way I'm glad. If he stays off the booze and gets in some stable place again, maybe he'll buy some time.

I wish I could say that his kind sweet self was back. But he is so crabby. Ankles and belly full of fluid. And he is so tired and run down. It is sad to watch. And hard to take sometimes.

I will quote you in an earlier post: "Plus now with Hubby sick I feel so all alone. And I have anger bubbling underneath the fear and sadness."

That is where I am too...the anger is underneath...why did he do this to himself...to me...to his kids...to his grandkids...didn't he love us enough to keep himself safe?

Be well yourself. I'm gonna try to do the same. ML
Posted 10/13/2010 9:10 PM (GMT 0)
Mike was ill the first time 28 years ago and also 25 years ago and missed months of work. Really sick, but we had no name for his illness then. Tired, night sweats, day sweats, and more tired. He rallied and continued on, but changed jobs as he was working in a factory with chemicals we felt were making him sick. They said he had mono, but it was not mono.

He was diagnosed with Hep C along the way. He took the treatment in 2003 but as a type 1a, he did not clear the virus. They did his liver biopsy then. He was so ill they told him not to do an Interferon type treatment again (so he won't be trying the new tripple regime due out soon). He came off the treatment and expected to start feeling better...better than bad hair, wt loss, constant nausea, grinding fatigue, mood swings, raging rages, , mental fog and more fatigue. He couldn't do anything...certainly not work. Then they decided he had chronic pancreatitis and he lost another 30 lbs. He was not digestsing and using his food. He started taking digestive enzymes. He was a stick. He went from 230 to 150 over that year. I thought we would lose him that year...and it is 8 years later. He even quit drinking that whole year. (But relapsed the second year.) I think they started to call his liver cirrotic at that point...though it is unclear to me when that diagnosis was first made. His doc told him the pancreas would kill him before his liver. Wonder if that is still true?

Then he had some good years again. He went back to work, though he didn't do the same type work. He had been doing computer support type work for years but got a job in a office products store, mostly working the copy machines, etc.

He has had a couple of the ammonia episodes in the past two years. The first time I took him to an ER thinking he was having a cardiac episode. He felt like he was going to faint, got really really pale and wasn't making any sense. He had no chest pain. Then I thought maybe a stroke. I was so nerved up we drove 4 hours to be at a hosptial near our home and with his regular doc, we were visiting north of here. DONT do that, in an ER emergency, go to a close hospital no matter what. Nothing bad happened but I didn't use good judgement on that.

It was the ammonia. And it went down and we went home and time went by again. He continued to drink. His liver function tests have continued to rise in the past 2 years. And his other blood tests are not good either... He has intermittently had platelet transfustions, most recently before an outpt arthroscopic procedure on his shoulder. No surgical center procedure, in a HOSPITAL at hemotologiest insistance ,and surgery within 30 minutes of transfusion! His clotting time is very long as well.

This recent episode with bleeding and then the ammonia crazies has been unfolding over the past 2 months. He is really scared this time.

16 days. So far so good. Hopefully he can get stable again.

This is the part where the two cases are different. He has the Hep C and your hubby does not. I hope we both get some time with our guys...good time. ML
Posted 10/14/2010 12:17 AM (GMT 0)

Emma, you're right--it IS a disease and he did do it to himself.  But it's best to hate the disease rather than him.  I believe you said he has hep C.  If so, the liver enzymes won't return to normal unless he does treatment...but everything else should normalize or be close to it if he stays off the alcohol.

Hugs,

Connie

Posted 10/14/2010 1:15 AM (GMT 0)
Healthy Now.. I've heard all the things that you expressed... people saying Mike did it to himself...and judging me for standing by him... telling me to leave him... well I didn't....he was and is the love of my life... my prayer for you is that you will find those people in your life who can and will be supportive of you and your spouse... and I too hope for you to have more time together.... my thoughts and prayers are with you this day... rooting for you... both... Sandi
Posted 10/14/2010 3:35 AM (GMT 0)
I read a memoir by Stephen King about writing. He wrote it after he was hit by a car. His wife urged him to write the book about his writing life, to help put his head back on. He was hit by a distracted driver on a country road in Maine and was very badly hurt.

It was really more a book about his journey with drugs and alcohol and it is very well written. Not all preachy.

He had some funny lines in there. He said he was asked how much he was drinking. He thought that a silly answer. The answer was ALL OF IT. If it was in the house, it was gone before he quit! Or passed out.

He said he would want to scream at folks in restaurants who left a half a cocktail or unfinished glass of wine. Who could do that, he would think. That's how it was here.

Not that hubby would get up at night and have another drink...but that he wouldn't quit until whatever was IN the house was gone.

King says he doesn't remember writing some of the books. Maybe that's the really weird ones...produce of the drugs and alcohol.

It is a pretty honest version of his journey through to the other side. And he is better, writing again...lots is that book The DOME is any statement about how MUCH he is writing.

His wife begged, etc. but she put her foot down finally and he did what he needed to do. I think they are still together.

It is 11:30 my time and I have to get up at 6...he has been in bed for hours, but I'm tired...so night all.

MamaLama in Florida
Posted 10/14/2010 7:07 AM (GMT 0)
Dear Healthynow... the commitment to stand by someone...is often forsaken in today's throw away world.. as people are thrown away when things get tough or for whatever reason.. so when one sticks to that commitment... it can be hard for others to understand... and when one sticks... during unimaginable situations... judgment often ensues.... I had friends and family members all along the journey and even now who judged me for sticking by him... and who over and over said I should leave him... and when I turned down a job that paid 2 1/2 times my current salary back in February... I was declared insane... I could not and would not leave him to die alone...and he did die within 3 months of that time... it took faith that God knew what He was doing... and a focus on the commitment that I had made...and all of it was so easy when Mike would smile or laugh or just simply say "luv u 2" at the end of a call.. he thrilled me until the day he died... though there were times I wanted to wring his neck.. and those are such contradictary emotions... and always through the exhaustion... I wanted it over... but I didn't want him gone... so there we sat in that limbo.. welll.. Healthynow...may you and yours be blessed this night... Sandi

Posted 10/14/2010 7:31 PM (GMT 0)
Emma, good news that he doesn't have hep C. He could very well be okay in time if he stays off the booze. We have a member here who used to post, with a similar story. But he has his life back now, so we don't often see him here.

ML, I read that book! Still have it. Maybe worth reading again. And King and his wife, Tabitha, are still together. He writes a weekly book review for Time now.

Hugs to all,
Connie
Posted 10/14/2010 9:32 PM (GMT 0)

hep93 said...

Emma, you're right--it IS a disease and he did do it to himself.  But it's best to hate the disease rather than him.  I believe you said he has hep C.  If so, the liver enzymes won't return to normal unless he does treatment...but everything else should normalize or be close to it if he stays off the alcohol.

Hugs,

Connie

Hi all

I have been reading this forum for about a year now but this is my first post.  I will do a proper intro when I have finished work.

I just have a quick question for now.  Why won't his liver enzymes return to normal unless he does treatment?


Posted 10/14/2010 11:16 PM (GMT 0)

Hepmom, welcome to the forum!  Please do start a new thread to introduce yourself and your situation when you have time.

In answer to your question, Emma's guy could likely have his liver enzymes return to normal if he doesn't drink.  However, someone with hep C, such as ML's guy, will continue to have elevated enzymes unless he undergoes hep C treatment, it works for him, and he doesn't relapse.  Right now, half all all patients who try treatment do not clear the virus.  Of those who do clear it, half of them relapse.  So in reality, only 25% of those who complete treatment go into remission for good.   However, a new treatment on the horizon is having better clearance results (75%) and hopefully it will also have a smaller relapse rate.

Hugs,

Connie

Posted 10/15/2010 12:35 AM (GMT 0)
Hello to everyone here....I am a 28 year old daughter of an alcoholic that is dying from end stage liver disease and uncontrolled encepholapathy. He will not stop drinking, still smokes two packs a day and is out of his mind. Though I have lived with his drinking my entire life, it was only in the last year and a half that we started to notice dramatic changes in his moods, behaviors and overall health. My dad can no longer hold a normal conversation. He usually remains silent after questions, or changes the subject. He repeats himself. We find him crawling around on the floor even when he has not had a drop. He no longer leaves the house. He is overwhelmed by simple tasks and has mood swings that will give you whiplash. My mother has detached herself long ago, though they are still married they only see each other on weekends as she works five hours away. My brother is 25 and an alcoholic himself. He goes months without talking to us and cannot accept my fathers illness. My mom is content to allow my dad to stay living by himself and is in no hurry no matter how much research I bring to her or tell her that we need to intervene. I do not think my dad should be alone anymore, but no one will help me. I am trying to be respectful of my mother but her lack of concern is driving me mad. I am terrified that my dad will fall into a coma and die alone. My dad is better in the morning but sick in the afternoon, but my mom thinks he is fine because he can still talk. I have worked in healthcare for 12 years and know far too much to just sit here and wait for him to die. He will not quit drinking. But I dont want him to suffer. I am really struggling with this and would appreciate some advice from people with experience in this area. Thanks guys.
Posted 10/15/2010 1:23 AM (GMT 0)
BE, This is a touch situation. Are you living with him? I can't imagine. I'm in a situation where my hubby is really ill, but he has a loving situation and a terrible illness. His daughter is being kept a bit at arms length, she doesn't need to nkow how difficult this is/he is much of the time. I think you seriously need some help for YOU. I can't imagine what a solution would be. Terrible. I am so sorry. ML
Posted 10/15/2010 1:32 AM (GMT 0)
It is just such a ridiculous situation. I know I cannot move my dad in with me, because it will ruin my marriage. My husband does not understand what it was/is like having an alcoholic father. He is supportive but kind of takes the stance of "it is his fault this is happening" and he is so angry that I have to go through this. Im working on him. The kicker is, I work for hospice. I have spent my adult life taking care of people JUST LIKE my dad. I know what is happening and I know what is coming......
Posted 10/15/2010 1:43 AM (GMT 0)
Yes some of us have found ourselves in the dual roles as caretakers... one at work and one at home... I also found myself in this situation...no matter what your work... caretaking can become physically and emotionally exhausting...my thoughts and prayers are with you.. Sandi
Posted 10/15/2010 1:56 AM (GMT 0)
BE-I am sorry to hear what you are going through with your father and the rest of your family.  I can only imagine how hard this is on you.  You are in my prayers.  Stay strong.  Be well.  You need to be sure to take care of yourself so you can be there for your loved ones.

Emma

Posted 10/15/2010 9:01 AM (GMT 0)

hep93 said...

Hepmom, welcome to the forum!  Please do start a new thread to introduce yourself and your situation when you have time.

In answer to your question, Emma's guy could likely have his liver enzymes return to normal if he doesn't drink.  However, someone with hep C, such as ML's guy, will continue to have elevated enzymes unless he undergoes hep C treatment, it works for him, and he doesn't relapse.  Right now, half all all patients who try treatment do not clear the virus.  Of those who do clear it, half of them relapse.  So in reality, only 25% of those who complete treatment go into remission for good.   However, a new treatment on the horizon is having better clearance results (75%) and hopefully it will also have a smaller relapse rate.

Hugs,

Connie

Thanks for the welcome, I will post my intro very soon :)

I have had hep c for 21 years and have always had normal LFT tests. Even when I was drinking alcohol quite heavily my LFT's remained normal. I have read that up to 40 percent of people with chronic hep C can have normal (ALT) levels, even when tested on multiple occasions. So you can have hep c and not have elevated enzymes I think. His enzymes will probably not go back into the normal range because he has cirrhotic liver not just because he has Hep C.

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