cirrhosis from alcoholism, sorry this is long i'm desperate for answers. feel free to skip to bottom

this is really long it's just background info on my mom if you don't want to read it you don't have to but please look at my questions at the bottom, i'm desperate for anything that you guys might know. thank you so much.

i'm not even sure what to say...my mom is 53 (i'm 18) and has been battling alcoholism for 10 years now. she was a very strong and healthy person, and an extremely successful business woman but in september of 2005 she became very jaundiced, and developed ascites...her belly was so full of fluid it was hard for her to breath. i took her to the ER and she was admitted for 4 days. they did paracentesis to drain all of the fluid that they could, gave her librium to prevent DTs, gave her some IV meds and diagnosed her with alcoholic hepatitis. she was prescribed lasix and folic acid and i believe potassium, and was told to not drink, but continued anyway.

in october 2007 she was diagnosed with cirrhosis. she was admitted to the hospital for a few days, treated for ascites and then released. she started taking spironolactone with the lasix, and folic acid, potasium and a couple of other prescribed vitamins. again, she continued to drink.

january 2008 she was admitted to the ICU for 3 days because she had esophageal varices, and had been throwing up and passing blood for 2 days before finally telling me. the varices were tied off during an endoscopy, she received 6 blood transfusions, paracentesis again, and the regular IV meds (banana bag, saline, etc.) she had been having major muscle cramping and was told it was because of malnutrition and sodium deficiency. she spent 2 more days in the regular unit, and was discharged on the same medications as before and she had another endoscopy as follow up a month later.

september 2008 she became jaundiced and went to her primary care doctor. i only remember that her bilirubin was 8.1, but her doc didn't seem concerned. she upped the dosage on the lasix.

december 2008 i came home from school and went into her room to check on her. there was blood everywhere, and she was leaning over the side of the bed puking blood on the carpet because she was too weak to get up. she would not let me call an ambulance and because i've called one before and she didn't want to go and was able to answer simple questions they weren't required to take her so i called my brother and he came right over and helped me get her into the car and to the ER. she was once again admitted to the ICU for esophageal varices. another endoscopy was done to stop the bleeding and 3 blood transfusions given. when she was discharged, the gastroenterologist who treated her told her that she would die if she continued to drink. he also prescribed propranolol to lower the pressure in her liver to prevent more varices. a couple weeks later she had developed such bad ascites that her belly button herniated. she was drained once again, had the hernia repaired and was put back on the lasix and spironolactone.

she finally managed to stay sober and by february 2009 was very tired all the time, all bruised up, not eating, very weak, not really getting out of bed, severe itching. she's like this almost all of the time between hospitalizations anyway but it was more intense this time...i quit school so that i would be able to take care of her, because i was concerned about varicies and not being there to get her to the ER in time. she was supposed to have a follow up endoscopy done in march, but canceled it because she said she couldn't afford it.
the end of march 2009 she fell and hit her head and i had to take her to the ER for staples, and they did blood tests as well. her bilirubin was 9.7, and her AST was only 99, i can't remember the ALT, but i wasn't too concerned because the AST was lower than it had been in a long time.

about 10 days ago i noticed that she was getting very weak very quickly, her balance was all messed up, she couldn't eat, generally looked like hell, her belly was getting bigger, even though i was giving her her pills. she was having trouble opening her left eye and she was getting easily confused. she kept saying that no matter what she did she wasn't able to get warm, and that her bones hurt. i called her sister because i didn't know what else to do, i needed help, i've been taking care of my mom since i was 15 and i am getting exhausted and worn down. my brother and dad both moved so they aren't here to help me. her sister flew out here on monday and she convinced my mom to go back out to california with her so that they can help her do some things like apply for ssdi because she hasn't been able to work in 3 years, and make sure that she actually goes to doctors appointments, etc.

my mom didn't get out of bed for 2 days while my aunt and i were packing things up. i knew she was getting worse and needed to go to the ER, but since her sister hasn't lived with it, she doesn't realize certain things. she obviously knows that she is seriously ill, because you can take one glance at her and tell, but i knew something was going on and i asked my mom where she felt sick. she said that her heart, kidneys and liver hurt. i looked at her belly and her belly button was bulging out again, but wasn't purple yet. she started to mumble stuff and was obviously confused so i went and told my aunt that she needed to go to the ER, asap. when we went back into my mom's room to get her into the car she was standing in the middle of her room wobbling around about to fall over with a can of deodorant. i rushed over to hold her up and she started telling me that she was on her way to make pancakes. in the ER they took blood and gave her vitamin pills (all i remember was thiamine , folic acid and potassium, but there were a few more) instead of through an IV because the doctor didn't want to add anymore fluid than necessary. when the test results came back he said that she has hepatic encephalopathy, and that's why she was confused because of her ammonia levels (it was 45, which isn't too high, so i'm glad we got to in before it got worse, she'd never had a high ammonia level before).

he prescribed 5 days of lactoluse 30ml 3x daily. he also diagnosed her with pancreatitis because her lipase level was 657...but she has no symptoms of pancreatitis (she has had it twice before and had to be hospitalized for it both times in 2005), so i'm not sure what that's all about...he upped her lasix dosage and said that we were fine to go. i asked for a copy of the blood tests and when i saw them i was a bit concerned that the doctor didn't address some of the test results. her last set of blood tests were almost exactly a month earlier, then her AST was 99, now it is 334. i don't remember what her ALT was last month, but this time it was 57, which is a good thing. all of her blood counts are way off, but her platelet level is 20, when the normal range for that lab is 150-450. there was even an asterisk next to it, and down at the bottom of the paper it says "attention; notify ER of critical platelet value." but the doctor didn't say a thing. should i be concerned? i'm so worried about internal bleeding. also, all the times she's been hospitalized because of her liver...what is going on? it's not liver failure right? i guess i don't understand what's going on with her liver when she requires hospitalization because i always thought liver failure was deadly within weeks. and is there any way to gauge how advanced her disease is just by looking at lab values? one more thing...what is the general prognosis with cirrhosis from alcohol? thank you to anyone who can help me out.

Holdingon, I am sorry you are going through so much with your mom at such a young age.  I'm also glad you found us.  I must say that you are very mature and knowledgeable.  I read every word of your post.  Am I to understand that your mom is now in CA with her sister?  Or is she still at home with you? 

I can tell you that your mom is very sick and likely in End Stage Liver Disease.  I think that you were so involved that you didn't see how sick she really was.  ESLD can go on for a number of years, but given that your mom has not been followed by a hepatologist and evaluated for a transplant, she is very ill at this time.  The ER should have told you that.  However, sad to say, when alcohol is the cause of a person's illness, that carries a stigma and most physicians resent having to treat an alcoholic.

Blood tests are not always an indication of how sick a person is.  I had liver cancer from hep C (cancer free for nearly 2 years now) and my liver enzymes were never really high, nor was my alpha-fetoprotein (tumor marker.)  How a person looks and the symptoms are a more accurate way of telling how sick someone is.  Also, CT scans and MRIs with contrast show a lot.  Has your mom ever had either one?

My first suggestion would be to get her under the care of a hepatologist, as Amee suggested.  If she is in CA now, they have Medi-Cal instead of Medicaid.  From my understanding, it's not as good as regular Medicaid.  Your mom should have someone apply for SSD/SSI for her.  If she qualifies financially, she will get the SSI and Medicaid right away.  If not, it takes some time to get SSD (disability benefits based on her work history) and a 2-year wait for Medicare.

Secondly, try to find a hepatologist to take on her care.  Primary care docs really do not know much about liver disease and ER docs don't have the knowledge or time to treat her properly.  Did she stop drinking in Jan. or is she still drinking?  If she is drinking, doctors will be less inclined to treat her as they know whatever they do won't make any difference.  She absolutely has to stop drinking.  Also, if she is able to get a transplant, she has to be sober for 6 mos., documented by AA or an alcohol counselor they approve of.  She may be too sick and too far gone to qualify for transplant now, though.

Again, I am sooo sorry for all that you have been through.  Your mom has been lucky to have you there, but it shouldn't be your responsibility to care for her when she is so gravely ill. 

You can find a lot of information in the educational posts on the main page, as Amee mentioned.

Please continue to post, as we are here to support you, too.  My thoughts and prayers will be with you and your family.

i want to thank you all for taking the time to read and reply to my post. i don't have any other place to ask questions or to talk to about this whole thing. on the other hand i'm also sorry that you all are on here, i know what it's like to be a caretaker and can only imagine what it's like to be sick, but that must be very hard to deal with. i admire everyone on this forums strength and selflessness to be to give support and advice to people that they don't even know when you yourself are also dealing with difficult times.

AmeeP,
it is hard to do and sometimes i get jealous of my friends who don't need to worry about leaving the house in case their mom needs help, or who have been able to move out and live their own lives, but i do not want her living alone and if she had been living alone she wouldn't be alive right now. i refuse to just sit there and do nothing, and no one else will do it because they are angry that her addiction caused her to be sick and i understand that, but it doesn't mean she deserves to be abandoned and left alone to die, so it's hard to talk to anyone about it.

i'm sorry that you lost your baby. it must have been so hard to come home to find your mother in law in that condition right after having a d&c. how is your mother in law doing now? how long was she ill before being diagnosed with ESLD? my mom and i have only lived out here in utah for 6 months, and after her last episode of varices she ignored the gastroenterologist that treated her in the hospital when he told her to get a PCP, because of no insurance and very little money, so i don't have anyone to call about the blood tests, but she is now in california with her sister and has an appointment with a PCP on tuesday.

she is not being seen by a hepatologist, and has never been referred to one. every time she has been hospitalized she has seen a gastroenterologist while hospitalized and then her PCP after discharge, but the last couple times have been out here and she doesn't have one. to be considered for a transplant she will have to be sober for 6 months, and the only time anything about a transplant was mentioned was in december when the gastro who saw her in the hospital said something like "when the time comes, the university of utah has a great hepatology clinic and that's where they do transplant care", but from she only saw him a couple times after being discharged because she was in denial that she was sick enough to continue care with him.

we attempted to get her on medicaid while living out here, but she was denied because she was still a california resident (they use medi-cal). she would have been denied anyway though because after she stopped working and drained her savings, she had taken distributions out of her 401K, which counted as income. now there is only about 2,000 of that left, she's filing for bankruptcy and what's left of her 401K has been distributed to an account in my brothers name for safe keeping, so hopefully she will be able to get medi-cal now that she's back in california. my uncle has already gone down to apply for her. i'm very grateful that they are doing all that they are for her because after 4 years of no help, i was beginning to break. hopefully my mom and i can both begin to heal now.

hep93,
thank you. dealing with this has caused me to mature quite fast and because i was the only one taking care of her i try to learn about everything i can so that i'm able to do anything possible. she has been in california for 2 days now. thank you for the honesty. i have never been told how sick she is, and she has never been followed by a doctor regularly since she got sick. in both california and here she's seen only gastroenterologists when hospitalized, and never has a referral to a hepatologist been mentioned. she would see her PCP on occasion to get the diuretics refilled when she ran out of refills, or make an appointment to see her as a follow up after discharge every time she's been in the hospital, but since we moved to utah in november she hasn't had a PCP. her sister made an appointment for her to see their PCP on tuesday, and i hope that they will be able to get some more information about her condition and will tell my aunt to ask for a referral to a hepatologist.

i am upset with the ER doctor because he didn't say anything about her liver other than to say she was confused because her liver couldn't clear out the ammonia. i don't even know if this is something that only happens in someone who is very ill, or if it can happen in someone with very little disease. everything i find online isn't very clear.

i'm well aware of doctors being reluctant to treat her because of alcoholism. she hates, hates, hates the hospital because of the way she was treated the first time she got sick. she said that they made her feel like horrible because she was there with something she did to herself, and telling her that addiction is a character flaw. she feels as though she doesn't deserve medical care because it is self induced.

i've read that lab tests aren't an indicator of damage. are enzyme tests used to give a hint that something may be wrong? that is awesome that you've been cancer free for 2 years! i hope that you will stay in remission and admire you for your strength. i get so frustrated that i don't have more information on all of this. i've read about symptoms of cirrhosis, and although every source varies on them, she has every single one (which makes sense because she has cirrhosis) and out of the complications that i just read about she's had several (hepatic encephalopathy, esophageal varices, both edema and ascites, gallstones, portal hypertension, jaundice, bruising) but i always thought that those were the symptoms not the complications? she has never had an MRI or a CT scan, only ultrasounds.

she is back in california and my uncle went down the other day to get her applied for medi-cal, but i don't know if she will qualify, because the last distribution she took out of her 401K counted as 20,000 in income on her taxes. she only has about $2,000 of that left, and her sister and brother in law are also helping her file for bankruptcy. i don't if they count look at "income" or at the current amount of money in her bank account. i know with SSI (because i get it) that you cannot have more than $2,000 in assets, which she doesn't. i do not know much about SSDI though, but my uncle is also working on getting that process started, but again i don't know if she'll qualify. she had a very successful career as a real estate loan officer and was making at least $250,000 a year, but when she got sick she stopped working and went through her savings quickly because of the life we once lived was an expensive one and she kept paying everything and wasn't responsible with the savings, thinking that she'd get better and be able to work again. when the economy crashed, she lost almost $700,000 of her investments in her 401K, and has pulled out and used almost all that was left of it to live on, besides 7,000, which was put into an account in my brothers name for safe keeping. i'm wondering if they will deny her for SSDI because she was making once making so much money or if she'd even be eligible for either because it was all self induced.

she quit drinking for 34 days starting in janurary and then started relapsed near the end of feburary. in april she got to sick to even drive down to the liquor store, but i'm not sure how long it's been now. she will not have any access to alcohol while living with her sister. they have made it clear to her that she will not be allowed to go into town alone for at least 6 months, they don't keep alcohol in the house and to get anywhere at all is a 20 minute drive because they live in the country. they also have said if she somehow relapses that they will ask her to leave because they can't have that happening. when she is well enough, her sister will take her to AA meetings. my mom has expressed the desire for sobriety and is glad that she is being given this chance, and knows that the structure will help her. i knew about the 6 month thing, but since i don't know a lot about this, i don't even know if she will be well enough in 6 months.

thank you again. i will check out the educational posts soon.

mer,
thank you for the response. it is overwhelming, but i don't think age has anything to do with it, taking care of someone you love is overwhelming on anyone. i am thankful that her sister is now helping out and has taken her into her home because i was getting drained and didn't want my mom's health to be sacrificed just because i was too exhausted to take care of her properly. i just needed a break because after 4 years it's gotten very difficult.

she is going to see a PCP on tuesday, and i'm going to tell my aunt to ask the doctor for a referal to a hepatologist, because all she's seen are gastrointerologists. my uncle is looking into the SSDI process, but i'm not sure if she will qualify.

my aunt and i talked about hospice care and it's something that will be done when the time does come. it is hard to think about it, but i know i need to face the realities of her illness. i hope both you and your husband are doing well, and thank you for taking your time to read my post.