Getting Our Hopes Up.

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2407
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 4/2/2009 1:58 PM (GMT -7)   

First I want to say thanks to this forum - I have learned so much in the last few days reading posts here.  And thanks to all the same people who respond with helpful, caring information.  Thank you so much.
 
My sweet brother (55 years old) is a severe, chronic alcohol of 35+ years, unemployed the last 12.  The last 5-6 years he has looked really, really sick (skin gray in color, moved very slowly, always wore a coat and gloves for being cold, regular nose bleeds, a lot of pain in his legs, etc.).  Then, last July, 2008 he went in the hospital with his first bleeding varices.  He was in a coma 8 days and we thought or sure we would lose him.  He came out of the coma with severe encephalopathy and severe wasting and was in the hospital 30 days, then on to a nursing care center for another 60 or so days.  Then home.  He hasn't had a drop to drink since last July!!  And now he has very, very slowly improving.  He just recently finally got his feeding tube removed since last July (not sure if he finally gained enough weight or can start taking lactulose by mouth or both).  The last 2-3 months he really started to move around better and sound clearer and is thinking clearer even though he is still on lactulose, hands shake, has spider veins on his face & shoulders, doesn't sleep at night, and has swelling in his ankles.  He can feed himself, dress himself, walk around really good now.  I am certain the improvement is because of no alcohol.  But just two weeks ago his right lower leg swelled badly, turned really red and was very painful.  He went back to the hospital for a few days on an antibiotic drip and they just released him with more antibiotic pills although his ankle is still red and swollen and painful.  This infection has me concerned.
 
What I really want to know is if it sounds like he has an irreversible stage of cirrhosis.  His wife is a sweet woman and has gotten him this far, but they absolutely do not/will not share details (my mom has tried to get facts/details).  From all I've read it sounds like he might be in the later stages of cirrhosis and may have some years left especially if he continues to not drink.  I am really trying to help my mom prepare mentally for what might come.  I know everyone is different, but given his symptoms/issues could he perhaps at least have 3-5 years left if he stays on good behavior?  Plus, I'm worried about this infection - I know the liver isn't cleaning the blood like it should.
 
Thanks for any input.  I realize everyone is different, but if anyone has helped anyone with a similar story as my brother's perhaps you could let me know the prognosis/outcome.  We can handle the bad news with the good.  Bless you all and thank you.  Lynn

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/2/2009 2:54 PM (GMT -7)   

Hi, Lynn!  I remember you!  Welcome back.  It's wonderful that your brother has been sober since July.  Is he going to AA or just stopped drinking on his own?  I also suspect that his improvement has been due to his abstinence.  In regard to your statement about cirrhosis...by the nature of the disease, it does not get better, but continues to progress.  The only "cure" at this time is a tranplant.  Has that been mentioned to your brother at all?  The progression of cirrhosis can be slowed by correct diet, including no red meat and lots of fresh fruits and vegetables.  The biggest thing one can do to slow the progression of scarring leading to liver failure is to stop drinking.  Now that your brother has done that, your family should focus on ways of helping him have better overall health and a better quality of life, for whatever amount of time he has left.  Since the feeding tube has been removed, nutrition is going to be of utmost importance.

Be sure to read the threads on Stages of Liver Disease and Encephalopathy Education.  I have also bumped a thread on Death and Dying to the top of the first page.

Your brother's leg concerns me.  It sounds like phlebitis.  Does he have diabetes?  I think I would seek a second opinion for him.

 



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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/2/2009 3:08 PM (GMT -7)   
Hello Lynn and welcome back. I am sorry that your brother has this disease. It's going to be a long hard row to hoe.

I'm sure you know that each patient is different and so it's very hard for anyone to guess how long someone has......even the doctors. There's too many factors to be taken into consideration. I can only tell you how long the progression took my husband.

When I first married him in April of 1999, the doctor diagnosed him with cirrhosis. I asked him the prognosis then............according to him he said from time of diagnosis of cirrhosis... that the average is 5 years. My husband was a big beer drinker and he continued to drink until his first encephalopathy episode in Jan. of 2005 . He stopped cold turkey. November of 2005 he developed liver cancer. After a chemoembolization in May of 2006 he started having seizures, then a mild stroke in November/December of 2006. He died in April of 2007. So I had him an extra 3 years then the average. One other thing. My husband was diagnosed with Hepatitis C before he met me. But it was undetectable by the time he met me. I am certain that if it was still active, his life span would have been even shorter.

He was on Lactulose,Xifaxan,Lasix, and Aldactone which he took as directed for the most part. Sometimes it was hard getting him to take that nasty o'l Lactulose. He also took a multi-vitamin without iron and magnesium,zinc sulfate, and vitamin A. They gave him Keppra for the seizures and Protonix for his stomach.

He experienced the encephalopathy, itching,nose bleeds, coldness, edema, ascites and the infections that liver patients usually get. He got varacies banded in his throat twice before they started to bleed.

He finally made the transplant list in Jan. of 2007 only to be taken right back off a few weeks later. (His cancer multiplied too much and his tumors grew too large by then.)

I hope this gives you some kind of idea as what may happen.

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.

Post Edited (Pink Grandma) : 4/2/2009 4:16:12 PM (GMT-6)


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/2/2009 7:22 PM (GMT -7)   
Lynn, It is really good to hear that your brother isn't drinking. I would start asking about the transplant list. I'll be praying for him and your family.
Butterflythree
 
There is always hope!


2407
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 4/3/2009 9:44 AM (GMT -7)   
Hep93, Pinkgranma and Butterfly3 - you all are so wonderful for unending support in answering every single posting.  I hope you realize how much hope and knowledge you give to people.  Thank you.
 
My brother is not diabetic that I know of.  I will check out info on plebitis.  He has one day of antibiotics left and then I'm not sure what will happen.  I saw him last night and he didn't look very good like he did a month ago.  His ankle area still looks red and a little swollen after heavy antibiotics - so I'm afraid the infection isn't out of him yet.  We'll see what happens on that front.  I will read the other posts you all recommended.
 
Pinkgrandma thank you for sharing your painful story.  My heart goes out to you.  I just think it's best if we can be somewhat prepared mentally on what is ahead.  So it sounds like if we get my brother to eat right (which he does pretty good), take his meds and mostly stay away from alcohol we can at least get those three to five years if not a little more.  That is what I was hoping to hear.  He has 4 grandchildren now and I can't put into words what it is like to see him sober, after three decades of alcohol, enjoying his time with those little guys.  It is a priceless gift.
 
I don't know if they're looking into a transplant, but I'm going to bring up the subject and see if they're getting on the list.  My mom wants to know that too of course.
 
I will keep you posted on the infection.  Keep your fingers crossed for us.  And thank you all again.  Everyone have a good day and weekend!  Lynn

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/3/2009 10:54 AM (GMT -7)   

"...mostly stay away from alcohol"

Lynn, there is no "mostly" to it for someone with liver disease.  He cannot drink one drop!  Otherwise, anything else that is being done for him will be futile.  In case he and your family don't know, he will not even be considered for a transplant unless he has 6 mos. of DOCUMENTED sobriety.  Which is why I asked if he's been going to AA.  wink

Thanks for the nice compliments.  I think PG will agree that helping out here is a form of therapy for both of us, and in my case (sober alcoholic and liver cancer survivor) a way of "giving back."

Hugs,

Connie


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


2407
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 4/3/2009 12:36 PM (GMT -7)   
Hi Connie - I see your name on this post all the time too and want to say thanks to you too!! You guys are like celebrities on this forum! GOOD FOR YOU for becoming sober and beating such an illness!!! I should have said "and most importantly, not drink" instead of "mostly stay away from alchol" ... he absolutely is NOT drinking a drop and plans to stay that way. No AA - he did this all on his own! We can't beleive it! He knows he almost died and the doctor told him when he came out of the coma after the bleeding varices there was no hope if he kept drinking. So, he quit -- just like that!! He has said over and over since last July that he is done drinking that he does not even want it !! So, if they are looking into a transplant he should easily qualify since it has been over 9 months now!

You know, when you think it can't get worse... our dad was sober for 17 years (he finally quit after the third time in a dry out center and lots of AA meetings). Well, watching my brother go through this horrible experience, my dad started drinking again a few months ago. Sad sad sad sad. Heartwrenching. He will be 80 in Nov, is on dialysis and drinks every few days. It is killing him to watch his son - I understand that. My dad was a chronic alcoholic many, many years but was able to stop. He never developed cirrhosis because he always worked and always ate really good. So, we have our hands full! Dad, brother and a sister are alcoholics. Sister still drinks too but keeps it in pretty good check for now - I think watching our brother has had a big affect on her. For some reason, my other sis and I did not get that alcohol "gene" as we call it. I am so glad you were able to stop!!

Thank you for your support, information and prayers. And have a good day Connie!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/3/2009 5:48 PM (GMT -7)   
Hello Lynn, And I agree with Connie it's our way of giving back. This forum saved my sanity when I found it.

Lynn it has to be documented by AA meetings or a therapist or something. When my husband quit a year before being considered for the list......they still required that he go to AA meetings and have them sign and date a little form that I made up on the computer........Then we had to give it to the transplant team for them to verify that he was indeed going to the meetings........they will not just take anyone's word for it.

That was a hard pill for my husband to swallow ....he felt he didn't need or want to go to AA. After I finally got in his face about dying he agreed to go. After all the fights we had about it .........he ended up loving it. He even continued going after they took him back of the list. I reminded him that there was no need to go but he insisted on going until he was physically unable to go anymore. Who would have thunk that he would enjoy it so much ??????? Not me.....

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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/3/2009 6:46 PM (GMT -7)   
Lynn, My husband's family has that gene also. Two out of eight children are not alcoholics. Many of the grandchildren have the problem. It is such a sad thing to watch. I have three children. I worry about them also. So far so good. I have a 14 year old daughter that really worries me though. I'm hoping that she doesn't get caught up in that web.
Butterflythree
 
There is always hope!


marketa
Regular Member


Date Joined Apr 2008
Total Posts : 26
   Posted 4/3/2009 11:03 PM (GMT -7)   

Hello Everyone,

since i last posted on this forum i was tryin to find my way back to the basic life living without drug or drinking. my pain are not really bad but the fears of just being sick scares me to not want to even go to the doc and see just where my condition is. on the other hand i have decided that i am going into a treatment center for 45 day and start working on getting clean. the best part is that they will test me and finded out where i stand. havent been on the forum and i have missed the love of my family and being able to share how i feel. i ask for yor prayer and i thank God for this forum. please someone get back with me. miss you all yeah


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/3/2009 11:45 PM (GMT -7)   

Marketa, it is good to see you here again.  I am thrilled that you are going into treatment.  They will have AA meetings while you are inpatient, but you really must continue with them (or NA meetings) when you come out and are detoxed.  That is when you will really need them...because reality will slap you in the face and you will need support to keep from relapsing.  Part of the reality is your liver disease.  No sense at all in playing ostrich.  You need to know where you stand so that you can get appropriate treatment.  You can e-mail me anytime, okay?  (Look in my profile.)

2407, I am so sorry that your dad started drinking again after 17 yrs.  He missed a great opportunity to help his son by doing so.  He would have been a wonderful inspiration and he could've helped him face his alcoholism and get treatment for it.  He could've been supportive.  I learned years ago, though, that relapse can happen...even to those with many years of sobriety.  It is the main reason that AA is a lifelong commitment.  One is never "cured."  It's always "one day at a time."  My being involved in this forum keeps me sober, too, as I see what happens to alcoholics who don't stop drinking.

It has been proven that there is a genetic component to alcoholism.  My mother and maternal grandfather were alcoholic, and my father was a "closet drunk" who had a fatty liver and killed himself in his 40s.

AA meetings and the people who attend are so very different from the outsider's preconception.  Although your brother may resist at first, if he gives it a chance he will find everything he needs to fill that hole inside that he's been trying to fill with alcohol.  wink   


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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/4/2009 4:17 AM (GMT -7)   
Hello Marketa and a big welcome back. I too am happy that you are getting treatment. It's easier to fight this disease with a strong support system. We are right here waiting......whenever you need us.

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.


marketa
Regular Member


Date Joined Apr 2008
Total Posts : 26
   Posted 4/4/2009 11:52 AM (GMT -7)   

hello hep c and pink grandma tongue

waking up this morning and looking at the greetin was such a blessin,feelin alot better about what i am about to do b/c i know its the right thing to do,and this is life or death for me. while gone in treatment for 45 days i will do my best to keep you all informed of my great success in my plan to LIVE. i believe in my heart that there's a way to beat this and i pray that daily there is research and cure. thanks guys for it helps to know that there is love understanding and comfort out there. have a wonderful day 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/4/2009 12:36 PM (GMT -7)   
Best of luck, Marketa!  It won't be easy giving up your "friend(s)" alcohol and drugs.  But you can do it if you want to.  Then you can concentrate on giving your liver and body the best possible chance for many productive years ahead. 

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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/4/2009 4:32 PM (GMT -7)   
Hi Marketa, I wish you great success. I know you are taking a huge step - but you can do it. I will keep you in my thoughts and prayers. Toolost

2407
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 4/6/2009 1:51 PM (GMT -7)   
Marketa, good luck to you! You have all my hope and best wishes. I'm the one in the family who has had to watch people I love with all my heart go down the alcoholic road. It has torn me apart. I don't know why I didn't turn to alcohol. That "gene" is just not in me. I don't even know you, but you go in there and give it your best - put all your strength and determination into it!!! My prayers to you Marketa. Please let us know how you do!! Love to hear back from you!!

Pinkgrandma - thank you for the heads up about my brother needing to attend AA - I'll do some digging and see what's going on with him on the transplant list. My dad went to AA for years and enjoyed it.

Thank you all for your help. I'll keep you posted if I learn anything new one way or the other with my brother. Bless you all, Lynn
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