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Posted 4/25/2012 5:41 AM (GMT 0)
Hi everyone, I am new here but so lost and confused on everything happening in my life right now and could really use just talking to someone who has been through this before. My older sister (only 34 years old) has been an alcoholic for about 7 years now.. She drank before but in moderation.. I won't go into details but her addiction started after something very traumatic occurred in her life. She also struggles with depression. We knew that her drinking had gotten out of hand and tried to hard to get her to quit. She went to detox twice but never a full out rehab. We never realized things would get so serious so quick.

about 3 months ago, she started complaining that she felt sick all the time. Upset stomach, nausea, just said she felt "weird." She kept telling my mom she had a feeling she was dying. We didn't take her so serious at first (we all tend to by hypercondriacs) but after about a month we encouraged her to see her doctor. Her doctor ran tests and found that she had a slightly fatty liver but other than that, all was okay. She continued to drink until about 6 weeks ago, she said she was getting worse so our mom took her to the ER. The ER doctors there told her that she had a fatty liver and alcoholic hepatitis but that if she quit the drinking, she could easily recover. She DID quit drinking, we had her on 24 hour watch between her husband, my mom, dad and myself. However, she rapidly progressed to worse and we took her to a bigger hospital in the neighboring city. They said that she had liver failure and were baffled because they do not understand how it rapidly progressed so quickly from her diagnosis just 12 or so days earlier, but it did.

She spent 2 weeks in the hospital (5 in ICU) and 9 days in a regular room. She was jaundice and her stomach is very swollen, but she was very conscious and aware, her bowel movements and going the bathroom was normal. The only other thing discovered then was her sodium level was extremely low which they got under control and said was not necessarily related. After 2 weeks, they sent her home saying she was stable and had an nurse visit her every other day. We also had a family member stay with her 24/7. 9 days after returning home, she had taken a turn for the worse and we rushed her back to the hospital (she has just been back in the hospital for 3 days now being admitted Sunday night). She has a whole team of doctors... kidney specicialist, liver specialist, gastroenterology, pallitative care and internal medicine. However, none of them can really give us an answer. The liver doctor did say that while her liver is very, very unstable and out of wack.. Parts of it ARE still working and that is a positive sign. However, her kidneys are shutting down from all the extra work they have been doing. The kidney doctor says there is a lot they can do for her kidneys.

However, she is acting A LOT worse this week. Her mind seems to be gone. While she is conscious and knows who we are and where she is, she will just say things completely crazy. Yesterday, she told us that Kim Kardashian stole her pills. Now I might should mention she was at one time diagnosed as having slight bi-polar disorder but has not had an episode in years. Tonight, I sat with her and she kept begging me to help her up and saying she wanted to go home. She is almost acting like a child. Also, getting her to take her pills is a struggle, we have to beg her every time. The doctors say that she does not have encephalitis or whatever it is, that it is a combination of the pills, a hematoma they found on her head from falling last week and the fact that her ammonia levels were high. Her potassium level was also off. They have stabilized both of those levels for now though but she is on 12 different medications.

I am so sorry to write so much, I just wanted to let anyone who can help me know EVERYTHING that was going on. This is my big sister and she has a husband and 3 beautiful children (Aged 13, 8 and 4). I am so scared to lose her. The doctors are honest that is very unstable but are always optimistic saying there is lots that they can try and will do everything in their power to help her. They tell us there are good signs (like part of her liver functioning) but she seems SO much worse than she was just 3 weeks ago. Talking to her and looking at her, I am scared she is in her final days.

Also, we know she is not a candidate for a transplant unless she stays sober 6 months BUT if a family member was willing to donate part of a liver.. would doctors consider that and would it work? I have heard of partial liver transplants since one does not need their entire liver...

Thanks for any words of encouragement/advice...
Posted 4/25/2012 6:14 AM (GMT 0)
Hello, Ashley, and welcome to the forum. I'm sorry that your sister is sick. However, it seems that her illness is entirely due to her alcoholism. The good news is that it can be reversed, even if her liver has decompensated. When she was told she had fatty liver disease, she should have quit drinking entirely. Instead, she continued on and now is in this predicament. Abuse of alcohol causes fatty liver.

Is she being seen at a transplant center (a large medical center that has a transplant team?) Yes, 6 mos. of documented sobriety is generally required, but if a center does living donor transplants then that length of sobriety would not be required.

You said the doctor says your sister does not have hepatic encephalopathy, but also says she has high ammonia levels. So this is a contradictory statement. High ammonia causes HE (saying odd things, strange behavior, etc.) and Lactulose is prescribed for that. Ammonia is then cleared from the system through 3+ bowel movements a day. So she should be taking this med. If not, ask her hepatologist about it.

It seems when a liver decompensates (is not able to maintain its functions) it happens very suddenly. She needs to stop drinking entirely if she wants a chance at living. It could take many months for her body to return to normal, but there's a chance that it will, or that her liver disease will not progress.

It is not unusual for people in liver failure to also experience kidney problems. Also, if she is taking diuretics ("water pills"), over time they can be very hard on the kidneys.

Once she is stable and being discharged, the best thing would be discharge to a halfway house or rehab facility. Her main concern needs to be sobriety and discovering the things that caused her to drink, and tools to use to prevent her from drinking again. You all can't watch her 24/7 for weeks or months on end...it has to come from her, and she needs to know what steps to take to get past that craving.

You might want to check out the info in the folder at the top of the page entitled Hepatitis Resources (about all kinds of liver disease.) You will also find information and support in the Caregivers thread.

I hope that your sister did not stop drinking too late and that she will be able to take the necessary steps to restore her to good health.

Hugs,
Connie
Posted 4/25/2012 12:58 PM (GMT 0)
Hi Ashley , I had a similar experience to your sisters . I went from perfectly fine to a ICU unit in days , I also knew something was wrong just before it happened . I couldn't keep the liquor down , It came back up , But still kept drinking to avoid withdrawals . My liver and Kidneys shutdown and my journey into liver disease began .

My Kidneys came back to life while I was in the hospital about 2 days later or so I am told ( I don't remember much in that time frame , 2 weeks ) . I was transferred to a better hospital about 45 minutes away and remained there for another 3 weeks until they got my ammonia levels down and stabilized me . I had not seen a Hepatologist for the time I stayed in hospitals but instead was treated by G.I doctors , Most G.I's don't specialize in liver disease but are generally knowledgeable . It was at the end of that 3 weeks that I was told I would not likely live beyond 3 months . A year passed by along with excruciating pain and medical procedures , I lost close to 80 lbs , Paracentesis was performed to remove a average of 14 liters of ascites 2 times a week , Started seeing another G.I and got a Hepatologist ( University Hospital -Chapel Hill , N.C ) .

I was admitted into the transplant program and did the 6 months sobriety thing ( I hadn't had a drink since I was diagnosed anyhow ) , I received a TIPS operation to stave of the fluid problem and suffered a umbilical hernia just prior to that . Well , Here I am years later . Still very much alive , Happy , Sober and managing to get by with a estimated liver function just above 15 % . I take meds every day and tend to my health with the help of my wife , I have limitations but I stay active .

I am one of the success stories but this doesn't happen very often with patients with addictions , It's easy to go into self pity mode and jump back into a bottle and that's usually the last straw for most . " I'm gonna die so why bother with getting better for a few days ? " . Yeah , Thats addiction speaking . If one gives in to that thought they will certainly die , and there is no death more dehumanizing than watching someone die slowly with this disease . She doesn't have to be another victim but ultimately that will be her decision to make if or when she regains a steady footing back in life . Glad to see you found us and my best of wishes to you and your family .



A. Ziffle
Posted 4/25/2012 5:04 PM (GMT 0)
Thank you both for your replies.

Connie- Let me rephrase what I said. I am only with my sister a few hours a day as we take turns sitting by her side so I get bits and pieces from the doctors and bits and pieces from my mom and her husband. As far as the hepatic encephalitis, I suppose that she DID it have when she was first admitted and they started her on the luctolose or whatever in order to rid the ammonia from her body and she did the 3 bowel movements (which smelled like pure ammonia) and they took her off (it was causing her to be in excruciating pain, which they said was normal since it basically turns your insides out). Right now her ammonia level and potassium levels are back to normal. Are transplant centers specific or do they have them in hospitals? We just mentioned transplant to the doctors and they said that right now, she is way to unstable to even be considered for the surgery that she would have to improve before we could even talk about it.

After spending most of the night sitting up with her, I am emotionally drained. She kept begging me to help her up and take her home. She said she had to get out of there. Yet, her mind is not completely with it. I wouldn't say she is confused or delusional everything she says makes sense right now, but she is scared and wants to leave. Her begging is constant. We are also fighting her to get her to take the medications. She also really doesnt say much, just please let me go, get me out of here and moans in pain.

Today, my mother spoke with the doctor from pallatative care and they do not think that she is going to make it. They are calling a meeting with the family and I am afraid they are just going to say its over.

A. Ziffle- we are not to far away. My sister right now is at Memorial Mission Hospital in Asheville, NC. One of the best hospitals in our area. Was your liver and kidneys both failing? At first, they seemed like she had complete liver failure, but now they are saying that part of her liver is functioning, is just all out of wack. Her kidney function was slightly up this morning.

I understand about the drinking again, but I just have to hope that if she was to get better, she wouldn't want to go through this again. She has 3 young children which need her. Which complicates this even more because we don't know what to tell them. THe 13 year old has heard how severe it is and we have discussed it with her. The 4 year old has actually seen her but really doesn't understand. The 8 year old knows nothing except mommy is sick and away right now. Did anyone ever have to go through this and deal with telling kids??

Again, thanks for your help and kind wishes.
Posted 4/25/2012 5:19 PM (GMT 0)
Ashleyba...my prayers for you and your sister.
Posted 4/25/2012 6:13 PM (GMT 0)
Ashley, are you referring to my suggestion of checking out the Caregiver's thread? You don't have to be a full time caregiver. If you are involved at all and have questions or need to vent, the posters there can be very helpful.

It does seem that the family or one in the family will need to give the okay for palliative care, if that is what everyone feels is best. If Hospice is involved, they can come to the home, if that's where she wants to be. They will make sure that she does not have any pain. They are very good at managing that.

I am really, really sorry that there isn't more hope. To answer your question, transplant centers are in hospitals--usually large ones, often teaching hospitals.

Ashley, it's encephalopathy, not encephalitis--there's a difference. It's good to know that her levels are normal now.

Once Hospice/palliative care have been decided upon, I think each child should be dealt with individually, due to the difference in ages. In the simplest language, they need to know that their mom is very ill and the doctors may not be able to "fix" her...in which case, she will go to heaven to be one of God's angels. If questions are asked, answer as simply and directly as you can. Is their father involved with their care?

Hugs,
Connie
Posted 4/25/2012 7:27 PM (GMT 0)
Ashley , Both liver and kidneys shut down . The hospital had to insert a drainage catheter to remove the urine until my kidneys began functioning . I don't know anything about that particular hospital other than passing by it while working in your area , We live in the southern Piedmont area 1-1/2 hours East from Charlotte . When I go to Chapel Hill I do meet people from all over Southern States as far up as VA down to GA , We feel lucky we don't have to drive as far as others but it's still 2-1/2 hr.s one way for us . Dr. Paul Hayashi is over Hepatology and the Liver transplant program . If you feel like a second opinion give them a call .

My daughter is 23 but took it very well ..... in fact , so well that she had the strength to ask me about my vehicle and the house in the event I kicked the bucket rolleyes . Sorry , I aint good at that kinda stuff but I think Connie probably gave the best answer as to how to explain it to the kids .


A. Ziffle
Posted 4/25/2012 11:13 PM (GMT 0)
Thank you Connie. I appreciate all of your help and advice. I am praying that if God can not heal her, that he will hurry up and take the pain away. As much as I am praying she recovers, I hate seeing her the way she is.

As far as their father.. That is a sticky situation. My sister was previous married and there father is in prison for another 6 years. He IS NOT and never will be involved in their lives. There stepfather (and the father of her 4 year old) is a good person but the relationship with his step children is not strong. It would not be in their best interest, nor do I know that their father would want to raise them. My parents will take full custody of both her daughters (the 8 and 13 year old). So, it is very hard because they already do not have a father. They have already felt abandon by him and now they are losing there mother.

I don't want to sound morbid and doctors cant give an exact answer, but how long does it take until one would pass if recovery is not what God has intended for her??
Posted 4/25/2012 11:52 PM (GMT 0)
Ashley, that is very sad about the children. However, I'm sure they will get loving care from their grandparents, if it comes to that. I was a stepchild and although I was cared for okay financially (private school, ballet classes), I was very aware that stepdad's attention and behavior were much more positive towards his own daughter, who was just 6 mos. younger than I.

Because this is such an individual disease, it's really nearly impossible to say how long your sister has left. Hospice is not called in unless there are 6 mos. or less left to live. And they are pretty good at accurately telling how long a patient has left.

Has transplant or treatment options not been discussed at all? Who would the living donor be and do they do that type of transplant at the hospital she is in? There are instances where liver transplant candidates have to receive dialysis while waiting for a new liver, but once they receive their transplant, the kidneys work fine.

I think there is more that has to be discussed with the doctors about what can be done, before assuming she's going to die. I do realize you don't want her to suffer and continue to linger if there is no hope. Does she have a Living Will or has she discussed her wishes regarding end of life?

Hugs,
Connie
Posted 4/26/2012 6:18 AM (GMT 0)
Spent all night with her. Not much improvement today. Very hard watching her like this. We took her 13 year old to see her. Her stepfather and my parents agreed if something does happen to her, her oldest daughter needs to make peace. It was very sad because she seemed pretty unaware her daughter was even there, she doesn't talk much except to beg to leave and cry out for my mom.

There is a family meeting tomorrow at 11am. I will not be attending because I feel its most important that her parents and husband attend so I can watch the kids.

To be honest, not a whole lot has been discussed. Today the GI doctor told my mom they were doing everything they could but that ultimately it was up to God (he knew our beliefs as we are constantly praying over her) so we knew his comment was the truth. Her father did mention a transplant because our other sister would be willing to give part of her liver if it meant saving her life. I am honestly not sure if they do it there or not, but said unless her health improved then there was no way she could survive the surgery.

One thing I did hear today, I would like some feedback on is they told us today that her liver is lopsided from all the fluid up and because the position that the liver is currently in, it is making it very difficult for it to heal... Can they not drain some of the fluid (i realize draining it all could be dangerous) but just some in order to get the liver back into a normal position if this is preventing it from healing? They said her insides are just really warped from the fluid, it just seems like to me they could go in there and do something about that.

I will let everyone know what we hear tomorrow.

As always, I appreciate all your kind words and help.
Posted 4/26/2012 12:41 PM (GMT 0)
I suppose her liver could be scared and severely damaged enough to make it warped . I'm not real sure of the reasoning behind not draining the fluid thats causing the problems . The risk of creating infection from a paracentesis Is the only scenario I personally can think of . My doctors weighed the risk and spoke to the family and myself about the possibility of dying from the surgeries I have had prior to letting me make a decision on what should be done . I have signed 2 waivers so far releasing the hospital from lawsuits to have the surgeries I needed to survive .
I notice you said G.I . Where is the Hepatologist and more importantly what does he say about this ? The doctor at the hospital I see had flagged my records to make sure nobody else operated on me without his knowledge , He didn't want me subjected to unneeded risk but draining me was approved . It's just a suggestion but I would dig deeper into whats going on surgically or in the line of preventive medicine .


A. Ziffle
Posted 4/26/2012 3:59 PM (GMT 0)
Paracentesis is something I'd want to discuss with her doctor. I'm sure part of the reason for not doing it is the risk of infection.

Do keep us updated.

Hugs,
Connie
Posted 4/26/2012 5:42 PM (GMT 0)
Hi all, unfortunately the news we got at the family meeting this morning was not good news. Her team of doctors met with the entire family and basically said that they have never seen someone in as bad of condition as she is, with no major improvements in over a month survive. They said they reviewed all their old patient charts and it was an unlikely event. They said with no major breakthrough's her chances are slim. They are going to continue her medications but focus more on giving her medications to make her comfortable. Pain medication and ativan to calm her down. My heart is breaking. They basically told us she would die in a matter of days. I do not understand how she went from perfectly fine just a few short months ago to her life slipping away. Even a month ago she was over at our house for a cookout, a little sick to her stomach but we thought she just had a bug that wouldn't go away.

I feel angry that the doctors are in a way just giving up, but I do not want her to suffer either. They said they could keep her alive on life support forever, but that was no kind of life. I don't want that for her but I don't know if I can say goodbye. We took her 13 year old last night and she realizes now what is happening. Her 3 year old has also been up there, but he seems to young to understand what is going on. The 8 year old is our biggest concern. She was definitely her mommy's little princess and we don't know how to tell her what is happening. I wish the outcomes were different, I had hope she could pull through, but that hope was shot down this morning. Do you feel like getting a 2nd opinion would do any good??
Posted 4/26/2012 6:50 PM (GMT 0)
Ashley , I don't know if she could stand the trip but surely you could speak to another physician and forward copies of her medical records to them . Duke and UNC both have some of the highest rated medical awards in the U.S . Could you ask your doctors to consult with UNC's transplant dept. ? My G.I spoke to my Hepatologist several times during my visits to insure they all was on the same page with my health care .

I made the decision long ago to not be placed on life support for say a month should things go bad , No need in my family suffering when I'm already gone " home " . That's a personal thing and each person leaving there family in this way would trust you to know their desires and stand ready to do what they would want , Unselfishly . Whatever the decision would be .


A. Ziffle
Posted 4/26/2012 7:19 PM (GMT 0)
Ashley, I know that's not the news you were hoping for. I do think that Ziffle had good suggestions. If there could somehow be communication between the family and a different doctor for a 2nd opinion, you will know that you did everything possible.

All I can tell you is that if the liver decompensates, a patient can crash very quickly and be at death's door in no time. Some do come back (like Mr. Ziffle and David), but it takes time, excellent doctors, and a strong desire to live.

We will support you, whatever decision is made.

Hugs,
Connie
Posted 4/26/2012 7:21 PM (GMT 0)

Ashley,

This must be a difficult time for your family.

I was at the bedside of my sister’s partner as she passed.  12 weeks from a belly ache to that sad day, but there it was.   In the last night, they intubated her after she had a massive stroke -- after life saving kidney dialysis -- and talked about doing a CT scan of her head, etc etc.  The diagnosis was Stage 4 Colon Cancer with NO early symptoms…she had a belly ache after a golf game and went to the ER reluctantly to be checked out. It was Christmas week 2 years ago and her PCP was out of town.

The machines whirred and clanged -- and we cried.  My sister had a copy of the DNR paperwork in her handbag, and yet she held on to the hope that somehow a miracle would happen, and didn’t tell the charge nurse.  But there wasn’t going to be a miracle.  It took a couple of hours for my sister to understand the truth, that her partner had given recovery from the cancer surgery there was no coming back.  My sister had them turn off the respirator at 3AM.  Her partner of 41 years never took a single breath, she had likely been gone for hours!

After our family double guessed themselves over and over…if we had just…we accepted that there was nothing we could do. Sometimes, it is time.  Death is part of life, and that’s the truth of it.

Though it is very sad, especially for those whose life is shortened. And for those who are left behind.

Carol

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