My daughter and I found this site over a year ago, when her dad (my ex) was in the hospital. We learned then that he had severe liver and pancreas damage from many years of drinking. He spent a week in the hospital, 2 months sober, then another year of heavy drinking. He was rushed to the ER last Thursday, and nearly died that night. He was bleeding heavily from his esophogus. He now has 7 bands keeping the veins from bleeding. He is now deep in the DT stage: confused, delirious, very angry and hostile. His BP is dangerously low, the nurses can't leave him alone because he tries to get out of bed and falls, restraints will make him more agitated. The doctor has said that IF he makes it through this, any alcohol at all will cause his blood vessels to swell, the bands will break, and he will bleed to death within 30 minutes. Calling 911 would be futile. The doctor is talking about rehab. At what point is it too late for rehab? From what I understand, he is in final stages of liver disease. Will rehab actually extend his life, or will it cause him to die in a strange place-surrounded by strangers, instead of his family? Our kids are 24 and 20, and they are struggling with the rehab idea. We all tried to get him to go the last time, and he refused. He is much, much sicker now. If he only has a short amount of time left, the kids want to spend time with him.
Good morning Tina,
It sure has been a while and I wish the circumstances this time were better.
It is not too late for rehab, to continue drinking will cause his cirrhosis to advance more rapid. Here is how it works. Everything ingested kills liver cells but this is okay because the liver has an amazing ability to reproduce new cells. The problem is when alcohol is abused it kills liver cells faster than they can be reproduced this causes the liver to scar. It is this scaring we call cirrhosis. The amount of scaring determines what stage of cirrhosis. Symptoms will determine compensated or decompensated cirrhosis.
At this point staging his cirrhosis is critical and he should be seeing a hepatologist and/or gastroenterologist to receive proper medical treatment preferably at a transplant center. His MELD (Model for end stage liver disease) score needs to be calculated. Meld is calculated using INR, creatinine and bilirubin. Using this link will help you calculate it: http://www.mayoclinic.org/meld/mayomodel6.html . You can find these levels on his last blood test or you can simply ask the doctor what is his MELD score. You should also know that in order to receive transplant 6 months of documented sobriety is required. Only a specialists would be qualified enough to help Mark. An ER doctor cannot provide the care he needs. As it is his liver will never make a full recovery but people can survive for many years with compensated cirrhosis. Life expectancy of those with decompensated cirrhosis will depend if the cause of cirrhosis can be halted and the current MELD score. Any way I look at it Mark must do whatever he has too so he never again takes another drink.
It sounds like Mark is having a problems with varices grade 3 (enlarged blood vessels due to portal hypertension). Banding is the procedure used to help prevent this from reoccurring. However you should know patients who survive an episode of acute variceal hemorrhage have a very high risk of re-bleeding and death. The median re-bleeding rate in untreated individuals is around 60% within 1-2 years of the index hemorrhage, with a mortality of 33%. It is likely that a beta-blocker is being used to lower his blood pressure to prevent a reoccurrence. This portal hypertension is a direct result from restricted blood flow through a cirrhotic liver. Alcohol will not only kill off massive amounts of healthy liver cells but also increase blood pressure, neither of which is a situation he should gamble with.
Confused, delirious, very angry, hostile and loss of balance could be just be symptoms of DT's but not likely in this situation. You should also ask the doctor about HE (hepatic encephalopathy) as these symptoms are the same. His most recent blood test should have his ammonia level on it, an elevated ammonia level will tell if HE is possible. I can elaborate more about HE if you find you need me too. I see much of this we discussed before. You can find that discussion at http://www.medhelp.org/posts/Alcoholism/How-do-we-know-when-the-end-is-near/show/1546775#post_7119051 Is he having any problems with fluid building up in the abdomen? (Ascites)
Though it is good to hear from you again I wish it were under different circumstances. I hope Misty and Brian are doing alright. Please let me know If I can help with any other questions :)
Hi Randy! I can't believe you remembered us, with all the posts since ours! Misty is confused, frustrated, and angry. She took a leave from work last time, and stayed by his bedside throughout his entire hospital stay. She had faith in him when he swore he would never drink again. She was disappointed and upset when he started drinking 2 months later, and said she was done with him. She alternated between begging and fussing at him, to racing to be by his side when he was sick. She swore she wouldn't live in his hospital room again, but made arrangements with her job when she found out he was so critical this time. She has been visiting him regularly, but now he is so mean and cruel- not just to her, but the nurses, his parents, his wife, everyone who walks in his room. He can't understand where he is, and is angry with everyone. Misty called me last night, crying. She is "done"- again. She is tired of being cursed and screamed at, just for trying to be there to support him. I suggested she take a break, and hopefully this is a DT stage that will pass quickly. My son Nick is in the Marines. He was in boot camp during the 2 months that his dad was sober. Once Mark started drinking again, Nick rarely visited or talked to him at all. Now he comes home on weekends, and he went to visit his dad over the past weekend in the hospital. He cried, but he is angry too. He is also scared that his dad will die while he is on base, 4 hours away.
I'll find out his lab results. Is there ever a time when it is best to call Hospice and surround him with loving family? Or is rehab always the best choice, no matter how damaged his body is? Of course, both kids want him to quit drinking. But they don't want him to die in rehab, away from his family. We've tried to ask his doctor, but she is avoiding that question. Apparently she has no idea if abstinance now will extend his life.
Tina I am pretty sure I am not the only one who will remember you and Misty. It was a pleasure to talk to you both. I understand the mixed feelings Misty and Nick must be feeling. I hope they understand it is this disease that makes him the way he is. Some people no matter how much they want to change they unfortunately cannot find the strength to do so. He knows very well that his life is at stake just as he knew back then. Alcoholism is a vicious disease and after a while your whole life revolves around it. It can be really scary not knowing who you are without it as if the addiction withdrawals aren't bad enough. Al-anon could be very beneficial in helping them understand their fathers behavior.
I remember how upset Misty was last time, I'm sad to hear she will have to deal with it again. Understand that Marks not being himself right now.
Please take a look at this link as it will explain symptoms of HE (hepatic encephalopathy. Be aware that HE can lead to coma and eventually death if not controlled. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001347/
Now take a look at this:
Within six to 48 hours after not drinking, hallucinations may develop. These usually are visual hallucinations but they can also involve sounds and smells. They can last for a few hours up to weeks at a time.
Also within this time frame after quitting, convulsions or seizures can occur, which is the point at which alcohol withdrawal can become dangerous, if not medically treated. The symptoms may progress to delirium tremens (DT's) after three to five days without alcohol. The symptoms of DT's include profound confusion, disorientation, hallucinations, hyperactivity, and extreme cardiovascular disturbances.
Once DT's begin, there is no known medical treatment to stop them. Grand mal seizures, heart attacks and stroke can occur during the DT's, all of which can be fatal.
So after looking at these it's easier to understand how he might not be acting like himself.
I remember the frustration I felt at the time of diagnosis I wanted my doctor to explain to me how long I had and he simply couldn't. The best he could do is quote me statistics which was 5 years providing I stopped drinking. After spending so much time learning all I could about cirrhosis and I still read daily I understand. There are too many variables involved to draw an accurate conclusion until they have just days left. Genetics, diet, exercise, medication and medical expertise are some of the key factors and of course the staging. So it truly is a tough call to make. I think you will need to learn more from the doctors before you will be able to make a decision like that.
Hi Tinker, i remember you and your daughter. We talked many times on here. I wish you had better news. I am really not opposed to him going to rehab. I have a feeling it would be very healing, especially for the kids. He would be safe there and the kids could at least have that time with him. I have to head to work right now but wanted to say hi. Please tell Misty hi for me~~
Wow, I remember all of you too! I remember Misty and I both feeling so much better everytime we vented here. Everything built up, and we could release it on your shoulders, and jump back into the stress with a smile on our faces. I hope you all know what a difference you make to others!
We are hoping that Mark will go to rehab. We won't really know for sure until he is through this confusion. He has been told so many times that he is in the hospital, but still has no idea where he is. In the past 2 days, his hospital bed has been a "hot tub", a "coffin", and a "couch". He didn't recognize Misty at her last visit yesterday, and didn't know his own sister today. The only thing that he has said that makes sense: He has called his wife every name in the book, and she truly fits every one of those names. (I'm the ex-wife). lol
The doctor said tonight that she thnks the confusion is from the Adivan that he is on to keep him calm. He was taking it every 4 hours, but they are trying to wean him off now. Today he got it every 8 hours. So hopefully he will be thinking more clearly soon. Due to privacy laws, we can't get his lab results without his permission. He is in no condition to give permission yet, but hopefully soon we can get some facts and figures. We really need to know what is going on inside him. The doctor mentioned "Stage 4", but we have no idea what she was talking about. Liver disease? Liver cancer?
We are not going to Al-Anon. Not because we don't think it will help, just simply because Misty is a newlywed working 2 jobs and going to college too. (She changed her major after the hospital stay last year. She is a CNA now, and was planning to get her nursing degree. She is now studying to be a Substance Abuse Counselor). I am a stay-at-home Mom, raising my hubby's 2 grandsons that we officially adopted on Feb. 6th.
I visited Mark in the hospital last year, and his wife wasn't happy about it. I haven't been to the hospital yet this time, but Mark's mom and Misty call me with updates regularly. I then relay the updates to Nick, who is 4 hours away on his Marine base. He can only come home on weekends, but he is really worried. I may visit Mark after his confusion subsides, but I'm trying not to stir up too much family drama. His wife doesn't like me at all (or my kids, or Mark's parents, or his sisters, etc). Lots and lots of drama, which definitely adds to the stress of the situation.
The "thing" that he is married to doesnt like anythiHg, especially herself. I would go to the hospital. You have children together and that is bond you 2 will always share. I am really happy to hear Misty is going into Substance abuse counseling. The counselors who have personal experience in this area make the best ones. Congrats on the adoption also!! Make sure to take some time for you during all of this too. Dont lose sight of who you are. Keep us posted on how things are going. We are always here for you Tinker~~~
We might not need to convince him to go to rehab. Things have changed. He tried to get out of bed Wednesday night, and the nurse found him on the floor with a huge knot on his head. Since then, he has spent more time crying than cursing. He is still very confused and scared. His nose keeps bleeding today. He has moments of clarity, among the hours of confusion. He told his Mom this morning that he will be going Home soon, and asked how to meet the Lord. The preacher was called in, and he was saved this morning. He has babbled all day about the Bible. Some of it is coherent, most is not.
The doctor suspects that he has a head injury from the fall Wednesday night. They are waiting for the CT Scan results.
He has been crying for Misty, and she is with him now. Nick is on his way home for the weekend. I'm really glad he is coming home!
I'll update as I know more.
This might sound horrible, but I really hope this is it. He is in a lot of pain from his abdomen. His pain is controlled with the Morphine. My kids are the ones suffering the most.
Wow, after I read your post from yesterday, I went back and read the thread from last year. It was so emotional and moving. It was amazing to see your daughter stick by her dad thru that ordeal and then get to experience sobriety from him. I'm sorry that the disease got the best of him and he went back to drinking. I'll say a pray for him, to bring him peace in whatever comes. Addiction seems to come straight from Satan. I hate it in my life and feel so badly for your family.
Dad, please look at me
I need to talk to you, please, sober this time
I have tried to stay strong for you,
For Nick, for myself, but I’m falling apart on the inside
While hiding the pain I feel
I don’t trust you anymore
All because you lost your self control
All because you didn’t know when to stop
Because you couldn’t say no
You never thought it was a problem
Forcing us to watch this dreadful suicide
You’ve stolen tears from me again
I’ve told you before how I feel
But you didn’t care enough to stop
Not enough to get help
Now you’re losing me and everyone around you
You’re dying Dad, don’t you get it?
Do you not have a rock bottom? Does it take death?
I’m trying not to give up on you
I have one last thing to say Dad
Hurry, before it’s too late
Hurry, before you’re gone
Before we lose eachother forever...
I'm sitting here, waiting for my son to get here. Trying not to worry that he is riding a motorcycle 4 hours to get here. (I'm still getting adjusted to him buying/riding a motorcycle).
I'm feeling guilty for my thoughts and feelings today.
Waiting on Misty to call me after she leaves the hospital. Secretly wishing this ordeal would end. Not for Mark, although it hurts me to see him suffering. But for the kids. Misty is at her breaking point, sick with worry and fear. Nick is trying so hard to be a tough Marine, but I've seen him cry several times over the last week.
There are so many things we don't understand about all this. Too many unknowns. We do know that Mark can't/won't quit drinking. He was so motivated and optimistic last time. It lasted 2 full months...Long enough to show the kids what kind of dad he could be. Long enough to get their hopes up. Now here we are again.
I haven't got another update yet. They should have the MRI results by now. I have no idea what can be done if he has a head injury.
I am glad that he is no longer screaming and cursing. That was really hard on Misty. She was torn between wanting to be with him, and wanting to stay away from him. His crying is hard too, but makes it easier for her to decide to spend time with him.
If it is his time to go, I pray that it happens this weekend so both kids can be by his side. I pray for peace and calmness..for Mark, his parents, and the kids.
Oh ITinker, try not to feel guilty about the way you are feeling. It would be for the best if he would just close his eyes. You are such a kind and loving mother. Your kids are so blessed to have you. There will be moments of anger for your children when this is over and at the same time there will be peace as he wont be suffering. I dont mean to speak of him in the past tense but i think we all know where this is going. My heart goes out to all of you~~
Nick just got home after spending all day with his dad. Mark is doing better today. The MRI showed no head injury. The doctor said that the confusion/anger/crying is a combination of withdrawals and Adivan. They have cut back on the Adivan, and he only gets it every 12 hours now. Nick said that he still had some confusion today, but it was much better than last night. The bleeding is his sinuses "leaking" blood, and the doctor said they may need to cauterize (sp) the vessels. He got another unit of blood platelets today, his 6th unit since he was admitted last Friday.
Misty figured out today (from talking to his nurse) that her stepmom is getting regular updates from the doctor, but she isn't sharing that information with his family. The rest of us have no idea what is going on. Misty has repeatedly left messages for the doctor to call her, but those messages are being ignored. We have no idea what the labwork/blood tests show. We don't even know if the doctor is offering a prognosis.
All we know is that he seems to be much better than yesterday, and the kids are feeling like they are riding a roller coaster now. They are afraid to be optimistic, but aren't going to give up if Mark is still fighting.
Last night, Mark had an emotional talk with Misty about his impending death. He never mentioned it to Nick today. I honestly have no idea.
Thank you all for your thoughts and prayers!
I would have Nick and Misty get ahold of Human Resources at the hospital and tell them their concerns. They are his children and have a right to know. I would also let them know the doctor is ignoring them.
Mark knows his time is coming Tinker. I remember my dad talking to me about things too. He and my brother talked about different things. We had the emotional attachment and i believe that is a father/daughter thing.
Mark is out of ICU, and steadily improving. He told his doctor that he is afraid to go home, because he doesn't trust himself not to drink. He now has 3 choices: Go home without rehab, go home and wait until a bed is available in an inpatient rehab center, or go out of state to a rehab center that has a bed. He has told his doctor to find a bed, and he doesn't care what state it is in!
It will be hard on Misty and Nick, but it will be good for Mark to get away from his wife while he is trying to quit drinking.
His doctor told him today that if he drinks at all, he will be dead within a couple of months. If he doesn't, he could live for years! That was a surprise, and the kids are thrilled.
So now we wait and see what happens. If he keeps improving, he should be discharged later this week.
Thank you all for the prayers and kind words. Things are starting to look up!
Mark's MELD score today was 13. Does that tell you anything that may help us know what to expect? Misty has the breakdown from the lab results. Let me know if that would help you help us.
He also learned that he has Hepatitis C and he is in on the "low end" of Stage 4 Cirrhosis.
To gain an understanding of Mark's condition you must understand the MELD score system and how it works and I will get to that in a bit. You must also keep in mind Hepatitis C attacks healthy liver cells causing the cirrhosis to advance and the MELD score to increase. This is also the case with the treatment of Hep C. and using alcohol. Different genotypes respond differently to treatment. One thing is perfectly obvious to me is that he must succeed with sobriety at this point. Here is some information explaining how the MELD Score works.
Your MELD score is calculated by taking three lab tests, plugging them into the formula and coming up with a number. These three tests are bilirubin, INR and creatinine. The bilirubin number indicates how well your liver is excreting bile. The INR measures the liver's ability to manufacture certain clotting factors and the creatinine measures kidney function, which can be affected by advanced liver disease. The scores range from 6 in a healthy person to 40.
The purpose of the MELD scoring system is to use an objective measure to access how soon a person will need a liver transplant. The patient with the highest MELD score will get the liver when a donor is found. This is done to assure that the sickest patients get the transplant first.
Because the MELD score is based on lab work, it can vary each time a patient has lab work done. Once a patient is on the transplant list he or she must have blood work done at scheduled intervals. People with high MELD scores may need weekly lab tests, while someone with a very low score might only be required to undergo lab tests every six to 12 months. This guideline does not mean that your physician might not want lab tests performed more frequently; rather, it is only what is required to stay active on the computerized transplant waiting list. A patients transplant team keeps track of his MELD score and will notify him when he needs to have lab work done.
And speaking of the computerized transplant list... The organization that manages the list is called UNOS (United Network for Organ Sharing). It is a non-profit, charitable organization located in Richmond, VA. UNOS operates under contract from the federal government. All patients who are listed in the United States are placed in this national computer system. When a liver becomes available in the patient's area, the computer will do a match run between the potential donor and potential recipients. The UNOS computer will provide the transplant center with a list of appropriate recipients based on blood types and MELD scores.
If a transplant center were to skip patients at the top of the list it would have to provide a reason for that action to UNOS. This is done to ensure fairness and equity in the organ allocation system.
This is something that needs to be considered at this point. In Marks case we have to expect that his condition must worsen before it can get better due to treatment for Hep C. How much worse will depend on how well he responds to treatment. Misty has my email address so if she would like to take a photo of Mark’s labs or type them out I will be glad to tell you all that I can. At this point sobriety and treatment is not the only things to focus on but diet and exercise will help him too. If transplant is being considered it will be important to make the body as strong and healthy as possible to increase survival rate. Most transplant centers have a success rate greater than 90% Here in Nashville they are transplanting at a MELD of 24 last I checked. As I mentioned to Misty earlier please keep in mind my knowledge is limited and I am in no way a medical professional but I am more than glad to help in any way I can. Also I am not sure if you knew but another great thing about MedHelp is that you can post a message for an expert (Doctor) to answer your questions. Here is a link to that section: http://www.medhelp.org/forums/Liver-Transplant/show/274
Mark is still improving. He is having trouble sleeping since they stopped the Adivan, but the confusion is completely gone now. He should be discharged over the weekend if all goes well. He will be getting the blood vessels in his sinuses burned before he is discharged. He is having nosebleeds constantly now.
He learned today that he has gallstones, but he isn't a candidate for surgery with his bleeding problem. He will have to live with them.
He also learned that he has Hepatitis C. That is bad news. He asked for his MELD score, and it shocked the doctor. She said that he was the first patient who ever asked for that. She retrieved his latest lab results, and his MELD score is 13 today. She told him he is at Stage 4 Cirrhosis, but she called it the "low end", so hopefully he still has some living to do.
He thinks he may be able to go directly into the rehab center there at the hospital that he is at now. It will be a 30 day program, with no visitors for the first 7-10 days. He seems very determined. I hope he can do it this time! After rehab, he is planning to go to AA with Misty. He also told the "thing" that he expects her to participate in those meetings too.
Misty finally got all her frustrations and anger out Tuesday night. Her stepmom sent her a hateful message through facebook. Misty responded with a very long and detailed message. She let it all out, then deleted her stepmom and that entire side of the family. Now she avoids calling or visiting the hospital when her stepmom is there, and POOF...The drama is eliminated!
Thank you all so much for being here for us! You guys have really helped us, with the information, and especially the kind words and prayers.
Randy, Thank you for your last post! Either Misty or I will be emailing you with the lab test results. We are very interested in what those numbers mean. Misty is relaying the information to Mark, now that he is thinking clearly. He is full of questions.
One thing that he forgot to ask his doctor today, that you may be able to answer. She told him that most likely, his death-whenever it happens- will be caused by uncontrolled bleeding. Is that a permanant concern, or will that improve as long as he quits drinking?
Thank you so much!
Tink, here is a section from a post I made earlier in this thread to help you get an understanding about Varices grade 3 (enlarged blood vessels) and what the chances are of another bleed. (I know you have a lot going on)
Mark is having a problems with varices grade 3 (enlarged blood vessels due to portal hypertension). Banding is the procedure used to help prevent this from reoccurring. However you should know patients who survive an episode of acute variceal hemorrhage have a very high risk of re-bleeding and death. The median re-bleeding rate in untreated individuals is around 60% within 1-2 years of the index hemorrhage, with a mortality of 33%. It is likely that a beta-blocker is being used to lower his blood pressure to prevent a reoccurrence. This portal hypertension is a direct result from restricted blood flow through a cirrhotic liver. Alcohol will not only kill off massive amounts of healthy liver cells but also increase blood pressure, neither of which is a situation he should gamble with.
I wish I could say that he could expect improvement but everyone's body is different. In my case I heal really well but I also have had grade 3 varices since diagnosis 2 1/2 yrs. ago and there has been no change. I can tell you though that Mark has been pretty amazing through all of this and no one can give an estimate as to how much time he has left not even an expert because there are too many varibles to consider. There are people who are the exception more often than you might think. He must focus on his recovery and do everything he can to make improvements. Learn as much as possible so he can know how to help himself and build better communication concerning treatment options with his doctors. Register with a transplant center ASAP where he can begin receiving more effective treatment than he can receive at a regular hospital. At his discretion he will void what his doctors now are saying and listen/consult all health aspects with the specialist at the transplant facility. He has a lot on his plate but if you take away the drinking then he is a man with a MELD of 13 and HEP C. Treatment is available and survival is possible. This is where he needs to focus.
His treatment options for varices include banding which I think he has had done but there are medications to reduce portal hypertension (blood pressure in the portal vein that feeds the liver with blood) and also a procedure called T.I.P.S. (Transjugular Intrahepatic Portosystemic Shunt) You can learn more about this procedure at: http://www.medicinenet.com/transjugular_intrahepatic_portosystemic_shunt/article.htm
If he continues to drink/smoke this condition will likely worsen. I can tell you that I however have never had a bleed but have grade 3 varices and my activities are not limited or any longer restricted. Lifting or cardiovascular.
Mark was told he would be moving to the rehab today. Then today, he was told he is being discharged to go home!?
They told him the rehab center won't take him, because his iron is too low. The hospital is kicking him out, because he isn't sick enough to stay there.
What the heck??
So now Mark is being sent home tonight, with the understanding that there is nothing else anyone can do. He begged for rehab, and believed until today that he would get 30 days as an inpatient. That's what he was told.
If he goes home and drinks, it will be because all the "professionals" gave up on him.
I don't understand this at all.
Thank God for what you are doing for your ex husband and your children, keeping it all together for them as you have. I have Hep C; as well as my husband, and we cannot possibly thank you , rpooo for you're incredible contritbution to Mark and all of us suffering from alcoholism and HepC. Thank you so much from the bottom of my heart for posting, Tina and Misty. I wish your family the very best!!! I will be praying for you all~~
Wow, I'm speechless and very sorry to hear this. Tell Mark to not lose focus, many people here have quit with-out using rehab. Myself included. He has two big reasons to do it and succeed, Misty and Nick!
Are they giving him a supplement for iron? People with cirrhosis must be very careful with iron intake because it greatly increases the risks of HCC (liver cancer). He will need lab testing on a routine basis. He will immediately need to register with the transplant hospital for proper treatment. The experts at the transplant hospital will provide him with the best treatment available. This is very important.
If Mark would like to correspond with me via MedHelp or email he is more than welcome. I wish the best for you and your family. God bless you all.
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.