How do we know when the end is near?

[Tinker35]

My kids are at the ER tonight with their dad (my ex). He has been a severe alcoholic for 20+ years and was diagnosed 15 months ago with Alcoholic Hepatitis and Cirrosis of the liver. He was told then that if he quit drinking, he had approx 2 years to live. He continued to drink heavily until 3 days ago, when he became too sick to drink. He has lost 40+ pounds in the past 6 months, is vomiting blood and has bloody diarrhea now. His skin is bright red from his neck up, his legs are very pale and tonight his feet are actually black. He is having extreme abdominal pain and he is shaking badly. His BP is very high and his pulse is 125+. The ER doctors are running blood tests and a CT scan now. They suspect "alcoholic pancreatitis" but are not explaining anything. The kids called me from the hospital, asking me to do internet research. They need some definite answers. We all know he is dying, but we have no idea if he is looking at days, weeks or months left. Can you help?

[rpooo]

The blood test they are doing now will help them determine the condition of the liver and if he is diabetic. The CT scan will tell them the severity of his cirrhosis and the condition of  his pancreas. It will also let them know if he has gall stones. This would be a large indicator that he has alcoholic pancreatitis. The blood you mentioned, weight loss, continuing to drink and the severe abdominal pain are all symptoms of this.
The high blood pressure is the reason for his face and neck area being all red. Also keep in mind he is an alcoholic who hasn't had a drink in three days so I'm sure he may be having some tough withdrawals. I am hesitant to say anything more since I’m far from qualified.
I imagine by now you already know the test results and I’m quite certain the doctor will answer the questions you all have.  God bless you and your family.
Randy

[rpooo]

Tinker, I meant to tell you that if you still find yourself searching for more answers tonight You might also try posting in a group called "Liver Disorders" and ofcoarse here as well.

Randy

[Tinker35]

Thank you Randy! He was told that if he goes home, he would die within a few days (whether he drinks or not). He was admitted and will be going through detox in the hospital. The doctor told him that as sick as he is, the detox may kill him but it is his only hope. He is getting fluids and nutrition through IVs, blood transfusions, Morphine for pain and Adivan for anxiety. This is the very first time that he has ever been through detox (actually the first time he ever WANTED to quit), so the kids are praying that it works. He has been drunk for most of their lives. If he makes it through the detox process, then we will find out how much of the liver and pancreas is permanantly damaged. If he only has weeks or months left to spend with the kids, I desperately hope he can spend it sober!

[rpooo]

Good morning Tinker,
I imagine it must've been a long night for you. Thank you for the update. How much a day has he been drinking? He should be just fine going through the detox since he has already made it through the first three days. Normally the most difficult and dangerous part of detox will last about a week. The blood transfusions will rid the toxins from the blood stream that the liver has failed to be able to filter. He may be acting confused and not know where he is. This will be due to the toxins and the morphine. The morphine is very bad for the liver but it's necessary for the pain and to help the with the detox. They probably already know the severity of the liver damage. The liver is amazingly resilient but to keep pushing it for 15 months after diagnosis I’d say that was a bad decision. He really needs to learn from this if it is not already too late. Although he had that chance when he was diagnosed.

This is kind of strange but it was 15 months ago that I was diagnosed with end stage cirrhosis. 3-23-10. I stopped drinking right away and my recovery has been amazing. I am very determined to live a normal life expectancy. Whatever that may be ha ha

I hope the best for your family. If you for any reason at all would like to talk please feel free to send me a private message (PM or email)

Randy

[Tinker35]

He has been averaging 10-14 beers a day for many years. He is finally scared enough to want to stop. He just turned 46, and our kids are 23 and 19. The detox is going better than I expected. He is scratching himself all over, and says he feels like there are bugs crawling on him. He is also shaking really bad now. He hasn't started acting confused yet, but the nurse warned us that he might. They are "testing" him every 4 hours by asking him his name, where he is, president's name, etc. So far so good. He isn't sleeping at all, so they are planning to work on that tonight. They have a separate IV ready, in case he needs to be "chemically restrained". They are prepared for him to get confused and hostile, and the doctors and nurses are great. They are warning us about all the possibilities, so it doesn't scare us. The kids are taking turns staying with him, so he has lots of family support. All the anger disappeared overnight. Now there is only love and concern. Blame is pointless now.
You are a very strong, smart man to stop drinking immediately after your diagnosis. He spent the entire 15 months in denial: The doctor didn't know what he was talking about. He certainly can't say that anymore.
I'm so glad you recovered so well. Thank you for being so kind!
Tina

[rpooo]

Tina,
The itching is very common for people with cirrhosis especially end stage. The reason for this is unknown although there are speculations but nothing has been proven. "unknown" is a word you will hear frequently when it comes to cirrhosis. Much more research is needed. Vitamin C and B-complex can be very helpful for patient with cirrhosis. Neither will harm the liver. The B-complex or B3 will help with the itching and the vitamin C is very good to strengthen the walls of the blood vessels. These is really important to cirrhotic patients that have "Varices". I'm sure he probably already has these so you might learn about them later. It’s likely they will soon perform an endoscopy (upper GI) to determine the damage he has done to his stomach and throat. This is how they will find the Varices (blood vessels on the verge of bursting).  

The shaking is normal also, it is just part of the detox he is going through. It will become less and less.

With the blood transfusion they gave him it cleaned all the toxins from his blood but it likely that the ammonia and manganese will be present soon enough and you will find out how it effects his brain giving him Hepatic Encephalopathy (causing the confusion and memory problems along with many more symptoms). Not all cirrhotic patients are effect by the toxins and again this is unknown. This not curable without transplant but in many cases it is manageable. Such as mine. Diet and exercise will become very important for him. His doctor will let him know what types of vitamins he should be taking.

I really hope he has another chance at recovery and if he does It’s important the your kids understand that with cirrhotic patients they normally look very normal and healthy but on the inside they can have a lot of severe pain and life threatening problems. So he can go from looking and acting completely normal one day and very quickly be gone.

This is a very friendly and helpful group. So maybe you might show him around as the people here are deal with their own sobriety while offering support and very good suggestions. There is a lot for him to learn. For yourself you might also take a look around someday when you have time for some group topic that interest you and for future reference the Doctor forums are here for you to use free of charge. Again God bless you and your family Tina.
Randy

[Tinker35]

Randy,
A quick update...He is sleeping a lot today, but still has no confusion yet. He is in a lot of pain, and the doctors are being stingy with the Morphine because of the liver damage.
We got some great news this morning. They have been doing regular blood tests since Monday night. The nurse was excited this morning when she told us that his liver enzyme level is finally coming up. It was the first time there has been an improvement. She said that means that his liver is not "dead". It is trying to heal itself. It was a happy moment, and he needed to hear that. It gives him hope that he isn't going through detox for no reason.
Just wanted to share the good news!
Have a wonderful night!
Tina

[rpooo]

That really is good news. Its a very long slow process but once he learns the type of life stye he needs to maintain he see its not to hard.He will make big strides and with every blood test see and feel the rewards of recovery. It's been 15 months and I still am making progress on my lab tests. This means I'm still healing. At this point it might be good for him to discuss options that will ensure that he will not succum to his desire to drink any alcohol once he is released. This is a must because if he drinks, he dies. There are no exceptions.

I am very happy to hear from you again Tina and especially happy to hear your good news. You are a wonderful ex-wife he he My ex would've just said "theres no hope for him" and that is that! Okay good night :)

Randy

[Tinker35]

My daughter (age 23) took an emergency leave from her job as a CNA, and she is staying with him day and night. She had a rough night last night. His whole personality took a sudden turn. He became angry and hostile-to her and the nurses. He was screaming and cursing, for absolutely no reason. He even threw his pillows at them. Thank goodness he couldn't reach anything else! He was confused and not making any sense at all. He refused the Adivan, but the nurse stuck him with a shot when he wasn't looking. She said they may need to keep him knocked out to keep him calm.
He is actually going through a triple detox-alcohol, cigarettes, and marijuanna. I have never hated my ex. He and I simply have nothing in common. He chose to spend his life partying, while I remarried and raised the kids. He and I haven't been close over the past 15 years, but we were able to talk without fighting. As the kids got older, his partying didn't bother me as much. They definitely learned from his mistakes, and both kids are very responsible and mature. Our son is leaving August 1st for Marine boot camp. His biggest hope now is that his dad will be able to see him graduate in October.
I honestly have mixed feelings about his alcoholism/detox/illness. He did it all to himself, but I hate to see him suffer now. His drinking has hurt the kids over the years, but they love him so much. I only hope that he has enough reasons to stop the drinking. He did talk to the social worker Tuesday, and admitted that he was scared to go home. He doesn't trust himself to stay away from the alcohol. He was asking about an inpatient rehab center, and she said it was a possibility. I think he understands now that if he drinks he will die. He is scared.
Writing to you eases my mind somehow. You can answer my questions and I can vent to you too. I'm glad you saw and responded to me! Have a great day!
Tina

[rpooo]

Good morning Tina!
I am so sorry your daughter and son have to see their father this way. Also I am also really glad I can be here for you. I truly understand how hard it can be to be in his shoes and in yours. Out of concern for how my wife has been doing through my illness I have spent a lot of time reading and talking to other caregivers.

The withdraws can surely be causing some of the anger and hostility in combination with the blood toxins (ammonia and manganese) effecting his brain and causing the confusion. At this point they should be giving him medication to help his body extract the toxins such as Lactulose and/or Xifaxan. It is critical that they bring the ammonia level down since this can also become fatal as well. This is something he will likely be prescribed to take even after leaving the hospital.

As far as the detox he should be getting through the worst of the alcohol withdrawals. The marijuana has no physical addiction and for the cigarettes your daughter might see if they can give him a nicotine patch or if she can. As long as they say "yes" then they may even allow her to go purchase some if necessary. I believe the 21mg ones are the strongest. I would think the hospital would be more sensitive to his addictions but perhaps they find its better if he just gets it all done at once. To stop the alcohol and nicotine both at once is very difficult. Smoking also contains a huge amount of toxins for the liver to have to filter so he will need to stop. Each cigarette contains over 300 different toxins.  The avitan (lorazepam) helps control anxiety. It will slow the activity in his brain allowing him to be able to relax. It also helps control the alcohol withdrawals.  

Has the hospital discussed any sort of release date? AA is a wonderful tool used by many alcoholics to maintain sobriety. Since he has concerns about drinking after his release then a support group like AA would be the perfect thing for him. Using AA and the support he can find right here at MedHelp I have no doubts he can succeed. Getting started; Go to http://aa.org here he can find a complete schedule of meetings in his area. I can imagine he might try to slack about getting started on this so someone might need to do it for him. Once he gets an understanding how AA can and will help him then im sure he will become very self motivated to do this himself. As you know I have never been to AA but with all the time I have spent in these groups I have never heard anyone have anything negative to say about it. Okay Tina keep hanging in there your doing great.
Randy

[spankyandrex]

I am so sorry you are going throug this...so sorry!  I've read this whole thread in disbelief someone could do this to themselves.  Meanwhile I just placed my first post over in the other board "living with an alcoholic" as my concern for my diabetic/alcoholic husband's health as well - now I read first hand what it could do.  

This is very scary for you and your family I'm sure.  I'm glad "rpooo" is here with you offering advice and good support.  I don't have much else to offer because I am just seeing the beginning of all my current husband's alcoholism issues.  I wish you the best.

[Tinker35]

Randy,
He has been on the nicotine patches since he was admitted. The cigarette craving doesn't seem to bother him until he gets agitated. Wednesday night was terrible, with the screaming and cursing. He was angry at our daughter for taking him to the hospital, so everything was all her fault. Since then, he is sleeping mostly all the time. He woke up for an hour or so a couple of times yesterday, and he was calm. The nurses allowed him to eat real food Wednesday and Thursday, and his enzyme level dropped. So he is back on clear liquids again. It was too soon. I am heading up there shortly to take our daughter some clean clothes and food. She has not left him since he was admitted Monday night. He was scared and begged her to stay with him. So they exchanged promises: She promised she wouldn't leave, and he promised to never drink again.
The doctors/nurses haven't mentioned a release date yet. When he is released, we are planning to try to get him into an inpatient rehab center. AA is definitely on our list of resources to use too. He will need all the support he can get. I hope he keeps his motivation after all this is over.
Spankyandrex, I'm so sorry you are going through it too. My hubby and I divorced many years ago, when our children were young, because of his drinking. I hope your hubby can stop before he permanantly damages his liver, pancreas, etc. I wish you the best too.
Tina

[rpooo]

Tina,
It sounds like they are taking really good care of him. Does your daughter understand that he sometimes isn't thinking clearly and is easily irritated. This is due to the ammonia level. Also realize that right now his whole life is changing and thats alot to think about.

I was an alcoholic for twenty years and when I stopped drinking I was worried because as sad as it sounds, I didn't really know who I was without alcohol. There was the work me and the drinking me. As it turns out I like me alot. ha ha My main concern was would my Wife still like me? Would I still be funny and be able to get her to laugh? Would I still want to do little cute things for her to make her smile. As it turns out I do it all better! She says she enjoys my company much more but she doesn't like that I can think faster to argue back with her. ha ha

Also you should make sure that your daughter understands how difficult quitting drinking can be. Alot of people relapse and if he does It doesn't mean he don't want to keep his promise. It sounds like you all have done a really terrific job in preparing all the support he could need.

I thought of something else last night is that he should obtain a copy of his lab results when he is about to leave the hospital. Then he will have something to compare future reports to and not his progress. Key things to look at are:
bilirubin
Ast
Alt
GGT (if listed)
platelet count
ammonia level
glucose

All the reults will have range limits next to them so he can quickly know if something is way out. Any talk of performing the endoscopy to check for henia or varices?  Have they mentioned if he has asities? When you see him today tell him to stop being gumpy pants. Okay Im wishing you the best still :) Bye for now Tina.
Randy

[Tinker35]

My daughter was warned by the nurses about what to expect, so although it isn't easy to deal with, his unreasonable temper explosions weren't a big shock to her.
He remarried 12 years ago, but apparently his wife doesn't care for him as much as his kids do. She was angry when he was admitted, simply because he was the only breadwinner in the home since she is too sorry to work (although they were struggling even when he was working). She is angry that our daughter has stayed with him since Monday (lots of jealousy there), she is angry that I am getting regular updates on his progress (even more jealousy), she pouted, stormed around, slammed the door, and made a fool of herself while I visited today, and we just learned today that she is strongly discouraging inpatient rehab. She is anxious for him to get back to work, and is still telling him "It's your fault, you did this to yourself."  My daughter is furious, but we are trying to keep this detox period as stress-free and drama-free as possible. My kids really liked their stepmom until this week. Now they despise her. I'm not sure he can quit drinking without an inpatient treatment program. As of today, he seems motivated and determined. I suspect that is easier in the hospital than at home.
Health-wise, he is very skinny, has a weird yellowish-red skin tone, still shaking, and sleeping a lot. When he was awake today, he was alert and making sense. He has had several anger bursts over the past 2 days, and was mainly angry because he couldn't smoke a cigarette. Our daughter begged the nurse, and finally got permission to take him outside for a smoke this morning. He had 2 cigarettes today, and they made a huge difference in his mood. In between, he is still wearing a nicotine patch. He is much calmer now.
The doctor hasn't mentioned any of the tests that you did. They are still doing blood tests several times a day, but that's it. He has had several nosebleeds since yesterday, so they are keeping an eye on that. The nurse told us his platelets are low, but it was expected. His pulse is still a little high, but his BP is normal now. So maybe the worst is over?
I'll make sure he gets a copy of the last lab results when he is discharged. We still have no idea when that will be, but he seems to be improving quickly. I'm hoping they keep him a few more days at least, but I don't know.
Tina

[Tinker35]

The blood test this morning showed that his enzymes are "eating" his pancreas. He is back on a strict clear liquid diet. The doctor also told us that according to his lab results, he is still squarely in the midst of the detox. He will not be going home anytime soon. He is sleeping a lot and the abdominal pain seems to be worse, but when awake he is alert and coherent.
He had/has no health insurance, and the hospital social worker helped him apply for emergency Medicaid when he was admitted. He was denied, because this is considered a "chronic" health issue. So we are scrambling now to find some type of government-funded program that will help with the hospital bill (and hopefully an inpatient treatment program too). He firmly believes he will die if he goes home.
Tina

[MistyMcFred87]

Hi! My mom (Tinker 35) told me about this blog that she started and the responses that she was getting in return.  I have been here since Monday with my Dad and have no intentions of leaving. I am a 23 year old nursing assistant here at this hopsital but all my time working here hasn't prepared me for what I am seeing now.  I guess it's different when it's your own Dad. My dad made a promise to me.  He said that he would go through the treatments and listen to the doctors this time if I promised not to leave his side. Therefore, I can't leave. I think now he's doing it now because he's scared and wants to because the nurse told him that he is dying.  I thought that my Dad was getting better until this morning.  They came in and told him that he could be here another week or two because his lipase levels are so high. Mom was right. They actually used the words eating his pacreas! So, they are not letting him eat. They also increased his morphine from every 8 hours to every 3. The anger that he was going through is for the most part over.  He's just scared. He also sleeps a lot. He tells me if he makes it through this, he is scared he will drink when he gets home.  I'm trying to find all that mess about rehab and all that.  One of my biggest fears is that we are too late. I'm scared. I'm scared he will miss me getting married and he will miss his future grandkids. But my biggest fear? That he will die in pain. This is such a painful thing to go through and it's hard to sit here and know there is nothing I can do. I wonder if I am watching him die or get better?  This stupid disease is the slowest most painful suicide I could ever think of! It's hard for the family, it's hard for the friends, but most importantly it's hard on him. I know that everyone keeps telling me to have faith and put into the Lord's hands but I am trying to be realistic for myself too. I am doing everything that I can right now to find help after we leave here, especially since he wants it! The other day he told me he was sorry for all the things he has put me through with alcohol. I have been waiting for him to say this every since I can remember. But I can't give up, not yet! This is my DAD and I only get one. I'm sorry I have been here for almost a week and finally found a way to vent and feel better.  I will be keeping you posted on how things are.

[rpooo]

Hi Tina. I am sorry to hear the news.  Do you know if they are giving him insulin? The function of the pancreas is to create insulin. Insulin is what the body uses to convert gluclose (sugar) into energy. Now they must be considering him to be a diabetic. Most cirrhotic patients will become diebetic sooner or later. I am very glad the hospital is trying to keep him there.

Unfortunately I dont know alot about the low income side of it all but I have some ideas that could help. Stuff I've heard along the way. I think a good place for you to start is with a local AA office for guidence. I know there are places that will provide rehab based on income. It will probably be hard to get much figured out this holiday weekend. So dont beat yourself up too hard over it and enjoy some time with him. Also if there is a certain type of medication he needs to be taking do a google search to find out the name brand of that medication and those companys usually have some way they can help. Someone will just have to contact them. As far as continued medical help I am hoping someone here will have some ideas. I don't know what alternitives there are.

I'm trying to think if there is anymore i can tell you about his condition but I dont think there really is other than right now it just takes time to see what his body can do in the way of healing. It's good they are testing his blood routinely so they can watch for changes.

Misty you are exactly right about cirrhosis, It is a very tough disease to live with and watch others go through. I have cirrhosis also and its why I spend so much of my time in this group attemping to help some change their life and the path they may be heading down. There is a lot of will power involved in order to survive with cirrhosis. We can hope he has went for help in time. You sure did the right thing by getting him to the hospital. Alcoholism is a difficult disease to live with and it makes it very hard to make the right choices at times. Your mom has mentioned about what an awesome daughter you have been. Your father is very lucky to have you well and your brother too.

I'll pray for your family and please post or email anytime you want or even if you just need to talk.

Randy

[ibizan]

I've been folllowing this thread and ur doing a great job in all of this!Social services in the hospital should provide financial eligibility for inpatient rehab if that is desired...different states have different requirements for assistance.....Misty...how is his hospital bill being paid now?

[narla]

It is so good that you can be there for your father,He really needs the reassurance right now.
My Brother-in-law is fighting the same thing at the moment and you're right it is horrible to watch them suffer.
Keep talking to everyone here and we'll be as much support as we can.
Remember to look after yourselves as well while you go through the stress of the unkown.

Thinking of you and your family-God Bless you all

Denise

[dominosarah]

I know this is so painful and hard for you to sit back and watch this and not be able to do anything to make your dad better.  I had a different situation with my dad, he had brain cancer and there was nothing medically i could do either.  I too was told to give it to God and all of that.  The most important thing i got from my experience was finally connecting with my dad.  The time we spent together is so sacred to me.  You are a power of strength to him now and he finds comfort in that.  The time you 2 spend now is something noone will ever be able to take away from you.  Give him a kiss and tell him you love him~~~sara

[MistyMcFred87]

Randy- Today when the doctor came in she said something about the increase risk of diabetes. However they are not checking his sugar or giving him insulin. He is taking a lot of fluids, protonix, ativan, morphine, and now ambien because he is having trouble sleeping all the way through the night.  He seems to take "naps" all night and all day.  I have a ton of phone calls to make because I found so many resources online today to help me get my Dad into rehab. It helps that he wants to go! He keeps telling me that he scared he will drink when he goes home. I'm starting to realize that to completely quit drinking basically means to change your whole life. All of his friends drink and I honestly don't know what he would be like if he wasn't drinking.  It's not that he always drunk, he just ALWAYS has a beer. He actually drinks on his lunch break at work. He admitted today that he typically drink 10-24 cans of beer a day and has been drinking for about 30 years. I will check into AA but I am wondering if I find a place that could help him with in patient if it would be best for me. Also, I wanted to ask you a personal question and I understand if you don't feel comfortable answering. How many times did you try to quit drinking before you actually did? My dad has tried many times before and obviously never succeeded.  If your wife told you this is your last chance and if you drank again she would never be there again for you how would you have felt about her? Do you as a former alcoholic feel like that is the wrong thing to do? I'm thinking of the possibilities of him drinking again. He said something today that got to me. He said "well if the doctors keep telling me I'm dying, then what is the point in going through all this to quit drinking? Shouldn't they be more concerned about me being at home and spending my last days doing what I want to do and being with my family?"  What if he DID drink again? Randy, I don't know if I can go through this again. I don't want to watch my dad commit suicide and that scares me. Do you have any personal advice about that since how you were on the other end? I don't want to hurt him but I want to be able to take care of me too. Am I selfish?

[MistyMcFred87]

Right now the hospital bill is still under patient out of pocket.  I am working my butt off to try to get emergency medicaid.  I feel like that is what it is there for.  We have been here since Monday and I have seen a social worker one time.  The only thing that she really wanted to talk about was disability.  I will let you know what they say when I can get her to come back to the room (I have requested several times and I finally let the nurse know that she needs to call someone else if the last one won't be coming back).

[MistyMcFred87]

Thank so much! Though I don't know who you, the people in this group have made me feel like I am not alone.  I need this group. I have been using it almost like a personal journal and it has become important to me.  I am using my aunt's laptop here at the hospital but she will be taking her laptop back because she needs it.  My mom is actually bringing me a laptop just so I can keep posting here. I think she sees this is important to me and it really is! My biggest concern now is making sure that he is ok. I need him here in my life because there are important things that will happen later in mine and my brother's life that we need him for! I haven't left this hospital not one time since Monday and I don't want to leave because I promised I wouldn't. I'm just scared. I am trying so hard to be postive and not cry in front him right now.  I don't want to bring him down or give him anymore negativity in his life right now. He has so much going through his head.  Dad asked me tonight if I thought he was going to die trying to get better. I lost it. I told him I didn't know but that I would be right here. I actually asked him tonight if there was anything that he wanted to do before he died.  Since being here this week, I learned my dad wants to be creamated. He is so willing to talk about "the end" that it scares me. It's important to know these things but it's a lot to take in.  I don't expect a miracle, but I won't say I haven't prayed for one.  I made sure to tell him tonight that I was his biggest fan! :-)

[MistyMcFred87]

I'm so sorry to keep bothering you but I came up with another question...

Today the doctor brought me my FMLA (family medical leave act) papers. I am taking off of work for this right now. On the papers it says that the approximate discharge date for him is July 12th. That is a lot longer than I though, but I am thankful for it.  But, on the papers it says that he will need help from the family because we should expect to see approx. 4 flare ups every 3 months lasting for about 7-14 days. Do you have "flare-ups" and if so, what exactly does this mean?