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Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 11/30/2009 10:39 AM (GMT -7)   
Hello everyone, or anyone who reads this. My mom has End Stage Liver Disease Cirrhosis due to excessive alcohol abuse. The Doc said "Terminal" which could mean up to 6 months but she won't commit to a time frame. She went into a Hepatic Coma for a couple days and has the cognitive ability of someone with dementia. She is 55, doesn't want a transplant. She doesn't qualify nor would she survive the wait. My parents are divorced but my father is supportive. He even bought her an MP3 player and put her favorite music on it for her. I have one older sister who lives in LA. She hates being away and visits when school and work allow. Family is involved and supportive. This side of the family lost their parents last year so all are familiar with the care for someone dying. My mother is on a TPN formula through a PIC Line because shes not eating. she has an NG Tube for meds because she wont take them otherwise. But now shes is vomiting the meds up. I hate seeing her like this. She is scheduled for a Gastro specialist tommorrow. yay. She had a GI bleed due to ruptured varicies. Not sure what else to say. I've been reading these forum posts for a while and it helps so i figured i should contribute. Thanks for reading this. Let me know if anyone is experiencing the same issue and may need help understanding symptoms and or treatments. Thanks

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/30/2009 10:55 AM (GMT -7)   

Affected, welcome to the forum--though I'm sorry for the reason that brought you here.

Lately we've have had a lot of new members with similar circumstances.  It's really frustrating to have someone you care about who has caused their own demise, or are contributing to it, especially so young.  You will find many others here in the same boat, and I'm sure you can also be of help to those same people.

I'm a little surprised to hear that your mom is just now seeing a GI doc.  She should actually be seeing a hepatologist (liver specialist), though at this point I suppose it doesn't make much difference.

Feel free to vent when it all gets to be too much.

Hugs,

Connie


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


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 12/1/2009 12:20 PM (GMT -7)   
i am so sorry i know your pain as i just lost my mom last monday to hep c and cirrhosis. the only thing i can suggest is be there for her as much as you can and tell her you love her.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 12/2/2009 10:27 AM (GMT -7)   
hep93, Thank you for your thoughts. I was surprised about the GI doc also. She had a GI bleed a few weeks ago so they want to check it again. There is currently no appt to see a hepatologist though i will bring it up now. Thanks

Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 12/2/2009 10:33 AM (GMT -7)   
Worriedgirl, I am sooo sorry to hear about your mother. You are experiencing now what i am most afraid of. I hope your healing comes quickly. My mom was very lucid and aware yesterday and was hearing the word "terminal" for the first time. She was always told drinking would kill her but it won't stop the evil disease of alcoholism. I cant stop thinking about what she is feeling or going through in her mind. I'm scared for her. I don't want to see her upset. I'm doing the best i can. Thank you for caring.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 12/2/2009 11:56 AM (GMT -7)   
thanks affected, i am trying to see past my hurt to help others and i am not sure how to go about it. i have seen first hand what this disease does to a person. for some they live a long time and for others it is a death sentence. i am not trying to be grim but im gonna tell you the signs i seen in my mom that told me she was done that way no one else has to be hooked up to machines for nothing.

after the first surgery she was not in her right mental state, she kept asking for her mom and dad who have been dead for years and i had to keep telling her they were gone. i know in my heart when she was out she was with them in another plane of the world(the one between here and heaven) and when she woke up she was wondering why they werent there. she also kept trying to pull tubes from her and asking about drink and when i would pull her hands away she would tell me she didnt know what she was doing. i know this to be true. she didnt recognize my sister at first or my uncle at first. she knew me but she looked right through me as if she didnt see me. then she was sedated and never woke up. then i noticed signs of kidney failure.

now not all are the same, everyone is different and for me i knew from that little that my mom was dying. she was already halfway in there. coming from the plane between earth and heaven. i know she couldnt eat anything for the last two weeks prior to the hospital. but for my mom she ate very little too.

for your mom i have no idea what to think but its good that she is seeing a GI. i dont know if the meds my mom were on would help if she doesnt have hep c. but is she on lasix, lactulose, or spironaldactone? i hope that all goes well with your mom. i will keep checking on you and i will post if i feel i can help. i am hoping i am being compassionate as i really dont know how i am coming off as i am completely numb right now.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 12/2/2009 12:05 PM (GMT -7)   
Just your responding shows compassion. Thank you for all of the info. I am learning way too much about this disease.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 12/2/2009 12:12 PM (GMT -7)   
yeah i know the feeling. i have learned way to much than i care to know about this disease affected. i have been through hell and back for the last year. also look for fluid retention, my mom retained a ton of fluid in her belly towards the end.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted Yesterday 4:12 AM (GMT -7)   
Hello welcome to the forum, here you will find some help and support to help you through these hard times with your mum.

if you read through some of the posts you will find that each case of esld has its similarities but unique in their own way. two and half years ago my mum started serious decline in her health through drinking. at that time she had her varices banded quit a few times and all the signs of liver disease she had to extreme. doctors gave her 3 months then if she continues to drink she does and she is still here. they cant commit themselves,because no one really knows. my mum is in hospital right now after fallin yet again, she is awaiting surgery for hip replacement as she broke her hip.
on seeing her she swore she had not been drinking, i knew she had, the same time saying she wanted to go for detox, i know she is only saying that for my sake because she truelly is still in denial. I know emotionally she is a wreck, feels a failure, hates herself and is deeply ashamed as well as the extreme pain she is going through. But she amazes me, so many times it has been touch and go, doctors fight to save her, now I think for what so she can put herslef through hell again. I do not go on at her, I wont play pretend games with her and i will not sugarcoat things, that helps me to survive.
all you can do is fill yourself with knowledge to help you understand what is going on her body (not too much for a time i got obsessed with looking out for symptoms, googling them to see what they meant reading much more into them) and be there for her if and when you can. my heart feels for you because i am in the same situation.

Affected by Disease
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted Yesterday 9:04 AM (GMT -7)   
Thank you Allie,

Your story hits very close to home. I have been battling my moms drinking for years now. She has been in and out of rehab, AA, counseling, detox, emergency rooms getting her stomach pumped, threatening suicide. last year she bought a trailer w/ her alcoholic boyfriend in a small town an hour and a half from any family members. He then got sick and died. So she moved up there permanently and drank herself into a coma October 17th. That's when it all hit. They told her "Terminal", and "Never live on your own again." She is now coming around and eating. They are working on her physical therapy. Now she wants to go back to her home far away again. I know she will just drink and die. So absolutely selfish. I almost want her to stay too weak to leave. I am just being dragged along through her nightmare of an addiction. Sorry, vented a little. I hope you and your mom are hanging in there.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted Yesterday 10:34 AM (GMT -7)   
affected, i hate to say this but she is gonna have to make her own choices and if t hat is her choice then there is nothing you can do short of getting guardianship over her and forcing her into rehab, and that may not even work. you may have to make a decision if you can watch her do this to herself or if you need to go your own way. i thought i was gonna have to make that choice, but as it turns out i was completely wrong about my mom drinking again and that she was actually sober(a very uplifting thought for me). its not a easy decision and only you can decide whether you can deal with it. for me the choice was simple i had to stay and help as i was the only person who gave a darn. i am smiling a little knowing my mom could count on me and i did not turn my back on her. your mom may want to quit but the addiction may be to strong or she may say whatever im dying anyways and keep on. just know whatever your decision we are here. my email and my yahoo addy are in my profile if you want to talk or need advice.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted Yesterday 6:23 PM (GMT -7)   

Allie and WG, thank you so much for stepping up and sharing your experiences and knowledge.  That is what makes this forum work and also makes it one of the best on the Internet!

Hugs to all,

Connie


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


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted Today 1:36 AM (GMT -7)   
it is very frustrating to watch the one you love suffer like your mum did. now as she is getting better, that dreaded feeling creeps over you, if your mum is like my own she might already have made up her mind that she wants out. she kids herself its not for the drink, she will not want you there as she does not want anyone seiing how bad things really are. i could see my mums mood change she would say anything to doctors to make them believe she was going to try and stop. this was so she would get out. or she would say to you " i will stay in here for as long as it takes, i am not going to put myself through this again" heard it so many times. it is hard when you watch them fight for her life knowing she will throw it away as soon as she gets out. connie is right though, it is her life her choices are you strong enough to go against her will and do the best for her, i dont know if i am.
i am sorry that i am quite negative. also sorry again worried girl i remember saying to you to trust your instincts they are probably right with regards to your mums drinking. well i was wrong,i think bacause i have been let down that way for so long it affects my opinion. I am glad to hear your mum was not drinking, it means she was trying a bit which makes a big difference. i know you miss her lots.
so sometimes my advice is not so good.....

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted Today 3:58 AM (GMT -7)   
no need to apologize allie normally instincts are right. she has let me down so much i assumed the worst
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are

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