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When is it too late for rehab?
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.
COMMUNITY LEADER
Have i recently told u how fortunate we are to have u here in this forum!:)????Thank You for all ur help to Tinker and Misty!
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)
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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.
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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.
Randy
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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.
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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.
Randy
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!
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!
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.
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.
Hi Tina,
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.
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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.
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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
I hope this has helped. Take care.
Randy
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
I hope this has helped. Take care.
Randy
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