Wife Fighting For Her Life With Severe Alcoholic Hepatitis

Excuse the long story. My wife Andrea is 33 years old. We have been married 12 years and have a 10 year old son. Andrea and I decided early on that I would work and she would be a full-time mother for patrick. She is an excellent mother and my son's world revolves around her.

I first noticed changes in Andrea in early November 2014. The changes were in both her behavior and physical condition. She was tired much of the time, began to withdraw, looked pale and was having problems keeping food down. She told me she had seen a doctor and stated it was cholesterol problems. I was constantly working and failed to follow up with her about the doctor's reccomendations and wrongly assumed she was on top of it.

By December Andrea was seemingly living on the couch and I began to become angry and resentful towards Andrea. The house was a mess and my son spent the majority of the time playing video games. Andrea no longer fixed meals and was ordering food all the time for the family. (She loved to cook and was very good at it). She had not done any Christmas shopping, something she also loved, and neighbors began to ask me why they never saw her outside anymore (She was always outside playing with Patrick and talking with neighbors). She was vomiting almost every time she ate something. I went through her phone text messages and found texts to her family where she stated she was suffering from bulimia and depression and getting counseling for it. I confronted her about this and I knew she wasn't getting any counseling. She stated she was going to but didn't want her family to worry. I reminded her that it was her responsibility to keep the house clean and take care of Patrick. I yelled at her and berated her for being lazy. I told her to see a doctor and get her problems fixed she actually asked me to give her to December 31st to get her issues under control which I agreed.

Needless to say December 31st come and went and Andrea just kept getting worse. On March 1st I told Andrea I would not put up with her behavior anymore and to go stay with her parents until she got her issues worked out. Patrick stayed with me. One of the first things I did after she left was to clean the house top to bottom that is when I discovered the real problem. I started finding 750ml bottles of heaven hill vodka stashed in various places throughout the house. I found mini bottles of cinnamon whiskey stashed in her dresser. I immediately confronted Andrea and she admitted to the problem. She stated she was going to tell her parents the truth and get help. After waiting a few days I sent a text to her parents telling them about Andreas true problem and sent pictures of all the bottles I had found. They never replied and apparently they felt I was lieing and trying to shame my wife. She finally admitted the truth on March 29th and her parents took her to A local rehab hospital. I texted her mother the next day and asked for an update. 15 minutes later I received a text from Andreas father, "Andrea not doing well. She is in ICU with liver failure and it does not look good. Please pick Patrick from school and bring him to the hospital so Andrea can see him." I immediately called him for an explanation. He stated that the rehab hospital was doing an exam before admitting her and told them to get her to an emergency room because of her low blood pressure. I was not told about this until asking for an update the next day. When I got to the hospital with Patrick I was also told that Andrea had signed a power of attorney over to her mom after arriiving at the hospital.

Andrea was awake on March 30th and spoke to Patrick and I. She told me she did not want to die. They decided to put her on a ventilator because she complained about not being able to catch her breath. She was yellow with jaundice and her stomach was bloated to the point it appeared she was about 7 months pregnant. She has been on a ventilator and sedated ever since. They treated her with steroids for a week but stopped because they said it was not doing her much good. They stopped her feeding tube a few days ago because her ammonia levels had reached 160 and she suffered seizures during the night. A CT scan the next day showed no brain damage. Today they are starting her feeding tube again because her ammonia levels had dropped to 69. Her billirubin levels for the past three days have risen from 10 to 10.8 to 11.8 respectively. Her INR today was 2.5.

Im scared and was hoping to get any advice, suggestions or opinions about her condition. I appreciate your time.

Thanks for the link. It gives me hope. My son and I really need hope now. We just returned from the hospital. Andrea appears a little more yellow but she doesn't appear to be twitching as she had been the last few days. The Ascites appear to be reduced according to her nurse. She is on feeding tube again and hopefully the ammonia levels will stay down (69 this morning). They are also providing her a blood transfusion. My son has difficulty talking to his mother at her bedside. He is using alot of avoidance techniques (I'm tired, can I play on your phone). I do have him in counseling. Your words and experiences are appreciated.

Hello Wilcans, I see your wife isn't doing well. Sorry about the situation your family is in. I may have missed it but you haven't mentioned if your wife has been seen by a Hepatologist or made any arrangements with a transplant clinic. You (or someone) will need to do that ASAP if she manages to pull out of this downward trend. Gastro doctors are a great supplement but are no replacement for a Hep Doctor.

Big Binder, Notebook or File cabinet. Not kidding either. I started with a file folder and found myself needing a entire drawer for all the paperwork. Well..... I say "I" but mean my wife actually. I'm the drunk in our relationship. She's my Wife, Friend and main support. Not to mention filing clerk. Ahhh, Yes tons of paperwork. Medical records, Insurance, S.S.D, Documentation of every poke, prick, puncture and x-ray of sorts from rooter to tooter. And she held down a 9-5 with a child of around your sons age. Mind boggling, to say the least. Am I worth it? Well.... She thinks pretty highly of me on rare occasions. Anyhow paperwork will need to be kept up with. Don't expect her or the hospitals to be your advocate.

Us, The alcoholics that get through this mess without giving in are few and far between. Frustration, Rejection and Pain tend to make us want to crawl back into our addictions. The road to transplant or proper medical treatment is full of just those road blocks. She'll be tested to the limit and if she slips it will be caught immediately in most cases. It's what is required. Sobriety, Stable mental and physical health. In just that order. They'll treat Ascites, H.E and anything else life threatening just short of transplant until she meets those 3 DOCUMENTED requirements. If she gives up, she can kiss any reasonably good healthcare good-bye.

What is required of you? Nothing in short. You seem to have a reasonable, realistic view of what your looking at. You can help with appointments and the documents but all is lost if she ain't serious 100 percent about a second chance for life. Seen alot of good folks that fought like Hell and died trying for that chance. Seen some pretty poor excuses for humanity who reportedly "acted the fool" and got a chance. You only get what you put into life. Karma can be a ......., Well, you know. Sorry about the rambling but I do that sometimes. Someone is always around to answer your questions. So fire away. See ya round I presume.

Ziff

Post Edited (A.Ziffle) : 4/9/2015 7:53:24 PM (GMT-6)

Wilcans,

You listen to Ziff. He has been there, been through withdrawal, coma, ascites, HE, the whole works. And came out of that alive and kicking. He has been doing well for years....went through transplant evaluation while facing sure death, and as time went by, symtoms eased some and they have him INACTIVE on his centers "list." WOW.

That is what I pray for your wife.

My partner, Mike, is the patient in our family. He had Hep C, Alcoholic Liver Disease AND Liver Cancer (Heptocellular Carcinoma).

I think that if he had not been a drinking man, he would still be "okay" and maybe like Ziff...waiting for TP.

But he drank heavily for a long time...no breaking up bars or DUIs, just daily beverages that did his already sickening liver TOTALLY IN.

The day he transferred from a regular GI to a Transplant Hepatologist his MELD Score (how they rank how sick you are and whether you get the next liver) was HIGHER than our center's average transplant score.

They wanted to keep him and get him the NEXT liver that matched.

BUT, they found out about the drinking....he wasn's just a Hep C patient with cancer....he was ALD....and so the rules are 6 months documented sobriety, counseling/AA, and a letter from a psychiatrist that he was unlikely to relapse.. GASP.. He was all but a dead man. The docs gave him 3 months to live and he needed to stay alive 6 months and convince a shrink he was going to be OK all the while sure he would die any moment.

He took the meds, did his weekly ethanol blood test and never failed, went to AA 4plus times a week (toddled in barely conscious, but he went), and went to the psychiatrist.

It was really rough. He was 6 months sober 5 days before his transplant....he definitely got the NEXT liver once he was eligible. That UNOS is serious....no alcohol.

I wish your family well, some of the families who come here with these type stories find their loved one has taken it too far before getting help. Her general health will likely be an important factor. And likely she will need therapy to address the reasons she was addicted.

Very very sad.

Please come back, where are here to support you,

Mama Lama


PS: I forgot to say, Mike will be 4 years post transplant on May 1st, and 4.5 years sober!!! A long haul.

Ask if her doctor is a hepatologist; a gastroenterologist with special training in liver disease. If not, try and find one. She should working with a major hospital that has a transplant program. Where are you located?

I don't believe they will put her on a transplant list, unless she is 6 months sober and physically able to survive a transplant operation and other transplant criteria. They won't waste a liver on anyone who might not take care of it. There aren't enough donor livers that they hand them out to everyone. You and your wife will have to work hard to get there. But you can do it.

My docs consider my new liver to be theirs, on loan to me. I went 4 years with ESLD (End Stage Liver Disease) , before receiving a transplant. It will be 6 years with a transplant as of July.

The first thing is to get your wife stable and sober. That will take a while. From there, you have a chance to try and get her into a transplant program.

I am in Louisville, KY. My wife is at Norton Women's and Kosair Children's Hospital.

She's in the best place for the the moment. Make friends with ICU staff as best you can. You'll find in most successful cases the nurses are the key component at this stage. unos.org/donation/ is a website that will keep you occupied in your search for details into transplant and how it works. MELD score dictates how critical her need for transplant. MELD is a scoring system basically. It is a combined set of particular labs (blood work) that allows doctors to know who gets transplanted first. Of course it's more technical but again, You'll be doin a lot of reading I predict. Get familiar with the search function here at HW and UNOS.

The caregivers and quite a few recipients will chime in as you educate yourself. It's a lot to take in and your in no condition to heap everything on yourself at once. You'll breakdown and that's no good for any of your lovely family. As silly as it sounds or hard as it might be your gonna have to sit this out. None of us can answer the whats next question. It's different in most all cases. Highs and lows. I been near dead as Carol mentioned with her husband. Bounced back and forth from seemingly healthy to so sick it's pathetic.

Ascites, Will be removed via medications like Diuretics or Paracentesis procedure. Preferably diuretics. Paracentesis is done usually if medication isn't doing the trick. A needle is inserted into the abdomen usually and the fluid is suctioned out through a vacuum system. I had chronic ascites. Nothing worked effectively with diuretics. Dosages will very and are a delicate balancing act. Some meds can actually strain the kidneys. Not something you want to happen. Trust me. Went into renal failure when I was admitted to ER after diagnosis. They came back at some point during my coma. My kidneys are doing fine even today. Years later. If your worried (sure you are) their are some really nice people here who are capable of helping you along, myself included. I don't stop in here often lately unless someone like yourself pops up.

Ziff

Bilirubin (4/10/15): 11.8
INR (4/10/15): 2.5

I dont know creatine but will find out tomorrow.

They have not said anything about viral hepatitis or testing.

I have humana insurance but they denied authorization for ICU because of "Contractual Stipulation" which I heard that means they wont cover because it was self induced alcohol. I'll fight that one at later time.

In reference to her alertness as a sign, she has been on a ventilator and sedated since her 2nd day there.

I really appreciate all of you taking the time. It really does provide me with comfort.

Hi Wilcans

I have no advice on Andrea's condition, but want you to know I am thinking of your family today. Please keep us updated. It is very difficult for all of you, I am sure. Big Hugs

That was today (finding out she is in a coma) that was told to me by my wifes RN. The RN told me this was not necessarily a bad thing and to look at the positive signs, billirubin down and ammonia down, but then I read things on the internet that coma can be Stage IV EH. I feel empty inside and know Im grasping for straws. The parent situation is at times civil, but at times cruel and I wish they realized that we are all suffering.

Yes please share whatever you are able. Im caught up in the rollercoaster ride of daily lab results. I read frightening statistics on the internet and then read that those statistics are even worse for women. I know I should not read those things and that they rarely provide you with anything but more anxiety, but I find myself constantly looking for more info.

My wife's bilirubin did increase slightly today to 13 (up from 12.8 yesterday) but her ammonia level dropped to 26 and her INR dropped to 1.5. Today was pretty uneventful as far as any activity from her. A neurologist came in and examined her. Checked her eyes did some tests on her arms and legs. He told us that her condition had not much changed, that he saw pupillary response and that her left side responded during a "pull" test but that her right side did not. He stated that he did not know exactly what to make of that. He also stated that those tests only measure basic brain stem functions and that a more complete test cannot be performed because she is still being given ativan. The evening brought more hope. My wife squeezed a friends hand and lifted her left arm and extended her left pinky. An hour later our son was brought to the hospital by my parents and began talking to Andrea. She slightly opened her eyes and appeared to look at him. Several family members saw this and it was a moment of great hope for everyone.

hi wilcans,
i have been following your and your family's story, and as we all know it is heartbreaking.
i have been, and will continue saying special prayers and sending special thoughts to all of you.
that was a beautiful picture. thank you.
My husband died from hep c, cirrhosis, and liver cancer in 2009. now, i am in the exact same situation. same diagnosis, prognosis, etc.
ted never abused any thing in his life. maybe that is why we had such a beautiful life of 37 years together, as he was an exceptional balance for me, with a mantra of "more is better" no matter what it was.
about the internet, my take on that is yes, we read a lot of horror stories, but i found, regardless of the severity, it always prompted questions. i used to read until my eyes crossed to get every bit of information i could get. it helped in many ways, mostly with being able to know what i was talking about (well...sometimes:) and getting questions answered that i would have not known to even ask.
i love reading everyone's input and suggestions to you. i wish i had known about this site when ted was ill.
i want to reiterate about the importance of getting a hepatologist. my opinion is it is urgent. i understand the merits of your wife being in icu, vent, etc, but you could/should have a team of hepatologists, transplant docs, etc., making plans for when she improves.
just because the mother has POA doesn't mean the docs won't talk to you, does it? i understand that a poa will allow the person designated to make decisions, but i am positive a husband is entitled to every little bit of info. maybe i misunderstood.
hang in there. you are doing a great job. this is completely overwhelming, i know. pick your battles.
May all magical healing arise in you, your wife, and your son.
zoarie

Thanks for be observant. Yes two days and it will be five years since Mike passed. It hasn't gotten easier. Although I have learned to take one day at a time. God has my daughter and I. Mike has inspired us to go on.

Deep breaths and one day and one moment at a time.. that's how we roll..


Sandia