Frustation with family members of friend with ESLD

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cin cin
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/24/2008 5:10 PM (GMT -7)   
Hello All,
I am new to the forum so bear with me. My childhood friend has been diagnosed with alcohol related ESLD and has been in and out of the hospital numerous times in the last 5 years. She would bleed, get transfused, feel better and then drink again. I know the Doctors told her that if she continued to drink she would die but to no avail. Now her liver is decompensated. She has no medical insurance so I get the feeling that they try to get her in and out as quickly as possible. The last time she was there her kidneys failed, along with the varicies and the severe confusion. The Doctors told her husband she could die. Thank God, she pulled through. She has been home a month and has not had a drink but her husband stays drunk. She has diabetes as well as Hep C and one night in his stupor he gave her a shot of insulin which almost resulted in coma. It's sick. He says he loves her but how can he continue to drink, not to mention leave 6 packs of beer in the frig where she can see it? We have all tried to tell him how very sick she is but he refuses to believe it even telling her when she gets better she will be able to have a "couple of beers.".The rest of us have been praying that she will remain sober and get healthy enough for a partial liver transplant as she has a twin brother. We have called the authorities but they say unless she requests it, they can not remove him from the house.
Right after she came home her best friend, myself, her sister and another friend had an intervention of sorts. We made sure that she knew that if she drank again that she would die. We also mentioned liver transplant which she seemed totally in shock about though her best friend was with her 2 years ago when the Doctor told her it had come to that. I think this is why she has not had a drink even though she is not saying anything to her husnband about his drinking. It's kind of like she is on auto pilot. Being her sweet, nice self.We have all been fairly encouraged by the fact that she has not drank and actually thought she would get better but this last week and a half she has dropped weight like crazy(her liver doesn't seem to distended  anymore..that's good, right?), and she is lethargic and at times a little confused. She also stopped taking her insulin. What's going on??? Her sister is staying there and says some days she is totally with it and wants to clean the carpets but the next she sleeps all day. Sorry this is so long but we are all confused.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/24/2008 5:36 PM (GMT -7)   
Hello cin cin and welcome to HealingWell. So sorry about your friend.
I bumped up some threads that my help you understand just what this disease is all about. They should be right below this post.

It's hard trying to deal with family members that just don't know about or will accept the facts about this disease. Hang in there. You've come to the right forum . You'll find that we are a bunch of well educated members who are very compassionate and understanding of the travel through this disease.

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.


cin cin
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/24/2008 6:28 PM (GMT -7)   

Hello Pink Grandma,

Thank you for your response. I did not receive the bumped posts but have been digging around through the forums. There are so many people that this horrid disease has affected. It does seem that many have the same questions and concerns. I wish I knew what the rapid weight loss meant even without her liver looking distended. It seems that she is better one day and down again the next. I assume some of this is depression but am concerned that she doesn't seem to grasp the importance of taking her meds. She has had every symptom of this disease. The bleeding from both ends, severe confusion, fluid retention, swollen feet, hands...all of this started about 4 or 5 years ago with the first instance of bleeding. We all thought she had an ulcer then more symptoms followed but as many of the members on here she wasn't given alot of information. Obviously, this last trip to the hospital when her kidneys failed and she was in a coma for a day and a half were the most serious. I guess all of us had become a bit complacent about her health as she always recovered very quickly until now. We need to know what we are dealing with. Every other time she was taken to the hospital she had been drinking. Can she get worse when she is not drinking? It almost seems like she is.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/24/2008 8:43 PM (GMT -7)   
Hi, cin cin.  I'm so sorry about your friend.  The topics that Pink Grandma mentioned are right beneath this one on the Hepatitis forum.
 
To qualify myself, I was diagnosed with hep C in '93, which developed into liver cancer.  I had cancer treatment at Mayo Clinic to shrink the huge tumor, and then surgery to remove the right lobe of my liver in May '07, with no recurrence of the cancer to date.  However, I still have the hep C and cirrhosis.  I'm also a sober alcoholic with no alcohol consumption for 22 years.
 
From what you have described, it sounds like your friend's husband is an alcoholic.  And he misses his "drinking buddy" (your friend.)
 
There will be no chance of a transplant until your friend has been alcohol free for 6 mos., with regular AA meetings or some other support system approved by the transplant team.  However, I applaud her month of sobriety.  She will have a much better chance of abstaining if she goes to AA.
 
As to the rapid weight loss, it could actually be her diabetes.  How closely is that being monitored?  And what is her diet like?  Is she eating healthful, appropriate foods?  Is an endocrinologist or primary care physician monitoring her diabetes?  Is she seeing a hepatologist or gastroenterologist (GI doc) for the liver disease?  It is difficult to answer your questions w/o more information.  However, you asked if she could die even though she has stopped drinking.  The answer is "yes."  That is true of everyone on this forum who has liver disease.  Treatment for hep C, abstinence from alcohol, a healthful diet, and close monitoring by medical specialists can slow the progression of the disease.  Of course, a transplant (if she qualifies and if it works) will give her a whole new life.  Being qualified for one and placed on the waiting list is not as simple as it sounds, though.  She needs to get her health under control, regardless.
 
I hope this info, and that given on other parts of this board, will be helpful to you.  You are a good friend to be seeking answers about her condition, and wanting to help her.
 
Hugs,
Connie

Post Edited (hep93) : 8/24/2008 9:47:25 PM (GMT-6)


cin cin
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/25/2008 4:48 AM (GMT -7)   
Hi Connie,
Thank you so much for your answer and may you get well and have a wonderful life! Nan does have a primary care physician and he told her last week that her diabetes was not under control and that she has to take her insulin. She is seeing the liver Dr this week. I am going to try to go with her when she goes to make sure she knows what questions to ask. It almost seems that she doesn't want to acknowledge how sick she is. She is bad about checking her sugar and taking her insulin. I hope this liver Doc is up front with her. She is still a little loopy and the last time we brought up liver transplant she thought we were being dramatic and trying to scare her even though her best friend was with her a couple of years ago when she was told that. She still thinks her liver wll regenerate. I guess she is in denial, Connie.
Cindy
P.S. I did find Pink Grandma's thread as well as the one from Shel and they were very helpful.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/25/2008 4:15 PM (GMT -7)   

Cin cin, she could very well be in denial.  In addition to abstinence from drinking, her diabetes must be under sustained control before she would even be considered for a transplant.  I'm not sure if diabetes itself would be reason enough for her to be denied a transplant, but it surely would if she is not taking her insulin or monitoring blood sugars.  The patient has to be an active participant in handling and treating this disease.  She is also still withdrawing from alcohol.  It does not totally clear the system for many months, so that is one reason she may seem "loopy" at times.  It could also be that her amonia is elevated.  It's hard to get through to someone who is in denial or doesn't want to change anything.  She has to be willing.

Hugs,

Connie


cin cin
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 1/4/2010 7:32 PM (GMT -7)   
Hi Connie et al,
I think the time may be near for Nan. She did return to drinking a "couple of beers" after the last time I wrote. Today she is back n the hospital in ICU. Her kidneys have failed, she has congestive heart failure and her blood pressure is very low. Her urine is the color of chocolate. They were doing dialysis when I left the hospital this evening. Her husband/drinking buddy brought her in on Saturday because she had told him she wanted to "enjoy the Holidays." The Dr's will not give any answers except to say her condition is "not good". Well, duh??? She doesn't have a will, living will or anything else that would allow any of her loved one's to know her wishes. Her ammonia levels are very high so she is totally not with it. I saw her Christmas Day and mentioned to her sister and best friend that she looked horrible and they told me that she fell every time she tried to walk. None of us thought to ask her if she was urinating. It's pretty obvious now that she hadn't for a while. This has been so sad and so darn unnecessary. It is so frustrating for those of us who love her to watch her kill herself like this. I read through this forum and see so many people out there asking "how long", what does this mean and that mean. I have learned that this is a disease that seems to go on for a really long time because you have to watch them continue the behaviors that you know will eventually kill them but not today. How many hospital visits? How many warnings? You start to ask yourself if maybe you should just back off because the answer is so simple to you (just quit drinking and placing anything toxic in your body and you will live longer) but they just don't want to hear that. She has probably lasted longer than her Doctor's expected but almost every organ in her body is shutting down. Once again I find myself wondering :how long?".
I hope this finds everyone well and wishing everyone a Happy 2010.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/4/2010 8:04 PM (GMT -7)   

Cin cin, I'm sorry that your friend's life is coming to an end.  The CHF and kidney failure are very bad signs.  It's probably going to come down to the husband making a decision about "extraordinary measures," since she doesn't have a living will and isn't coherent enough to make her wishes known.  I'm sorry it had to end this way.

I appreciate your note on my update thread.

Bless you.

Hugs,

Connie


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


DTM
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 1/4/2010 8:19 PM (GMT -7)   
Hello Cin Cin, I dont post often but I do read as much as I can. My father is 73 and has alchoholic Cirrohsis. He quite drinking for almost a year after he was diagnosed and had to be hospitilized for a bleeding episode. The Drs said he was not a candidate for liver transplant. He started drinking again in January of 2009 and has been going down hill since then. (Jaundice, Ascites, falling down, confusion, sleeping alot, etc) My mother drinks and has refused to quit drinking in order to help him stop and to get it out of the house. I used to be so angry with her. At this point even if my Dad quit drinking he wouldn't prolong his life so we have all accepted that he will drink, we will spend as much time as we can with him and love him. Hospice has recently been brought in because the Drs say they can do no more for him and my mother needs help to keep him at home.

Point of this is I understand your frustration and helplessness. You cannot fix this for your friend nor slap any sense in to her husband. You can only love her unconditionally and try to learn from this experience. Also to share this experience with anyone you know who may have a dependency on alchohol. I will pray for you and your friend. I know it is a long, ugly process and sometimes you just want it to be be over with and then you feel guilty about that thought.

Stay strong,

Donna

cin cin
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 1/4/2010 8:41 PM (GMT -7)   
Thanks for the response. I am so sorry for your father, Donna. And your Mom, too. Alcoholism is a horrible disease and I guess sometimes people would prefer death over living without booze. It does get frustrating. Connie, I am so glad to hear that you are doing well and as usual, thank you for your insight.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/5/2010 8:25 AM (GMT -7)   
What a powerful post Donna... thank you... for your understanding.. and help ... Mike is sober... but probably too late... who knows... but thanks.. Sandi..

cin Cin best wishes and prayers for you
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