Aa
End Stage Cirrhosis
My wife has just been diagnosed with End Stage Cirrhosis.
My question is...... What now? I have very little information other than what i have said on our profile.
Do we have a week, month, year or 2 or 3? I think I'm in shock to be honest, only got told the severity last night.
My question is...... What now? I have very little information other than what i have said on our profile.
Do we have a week, month, year or 2 or 3? I think I'm in shock to be honest, only got told the severity last night.
Looking good! The confusion is because her ammonia level is high. That is why they give the lactulose. It cleans you out through the bowels ( its rough) but it has to be done. When they get her stabilized on the meds and her ammonia is level she will no longer be confused. When you do get home though you really need to watch for that. MAKE SURE she takes the medication. It is awful, tastes terrible, I gag each time but if it is not taken I am on the way to the ER.
Ask lots of questions! If they will not give you answers as you stated, file a complaint. That is what they are there for. Go to anyone and everyone until they answer every question you want!
Have they given you her MELD score yet?
Ask lots of questions! If they will not give you answers as you stated, file a complaint. That is what they are there for. Go to anyone and everyone until they answer every question you want!
Have they given you her MELD score yet?
I apologize for the fatfingeritis that affects my rather messy typing... Please bear with me for a bit okay?
Sorry about that Flynnlynn... The previous post of mine wasn't supposed to be directed @ you as it was meant for My Lainey instead...
Part 2 of 2 of reply form genotype1a to my Lainey:
Throughout my time on the waiting list I almost passed over 20 times and each times I came back on my own or was resuscitated back to life within that 4 year time of waiting... And then I received the call and the rest turned out to be an 11 - 1/2 hour surgery in which I was clinically dead 4 times only to come back to life each time on my own! why/ because I never gave up and I never gave in! That's why! And I haven't given up since even though my health hasn't always cooperated throughout my post transplant new life of over 17 yrs. so far...
I have had too many complications to list in one post and I'm not going to try because it would require me to lose too much sleep if I attempted to list everything I have went through ever since! Already I'm becoming tired from all of the writing so far so I'm going to wrap up what I want to share with you and your wife so please bear with me fir just a little longer okay?
Now I wasn't the only reason for my 17 yr post liver transplant successful survival because I must give a huge amount of credit to my healht care providers who happened to be the best even though I didn't know they were ubtil later on when I was well enough to find out more about UPMC's Strazyl Transplant Institute... Many of the Centers of excellence throughout the country owe their existence to the expert training their doctors and other specialists received while on teaching fellowships @ UPMC or @ Cedar's Sinai out in LA and way back when all of htis expertise was in it's infancy, these two centers were responsible for training over 90% of all of hte transplant surgeons and specialist in the USA where most of them still practice their developed skills they learned there today!
So I'll echo what one of the prior posters said also by stating that you should try to find the very best liver specialists in your area by first doing a google search and then if you have any other questions regarding the process, please feel free to post here your concerns and I will try my best to help you seek the answers you need to know so that you journey begins as smoothly as possible and finding the best treatment environment for your wife as well as support information available to help you and your family cope throughout this very chaotic experience which you will eventually agree that I'm putting it very lightly when I describe it as an experience as opposed to a life changing series of events and experiences instead.lol What a runoff sentence!)
So don't waste any more time and start looking for hepatologist's located within your area and look up their expertise by comparing their successful outcomes based on what information and affiliations with transplant centers you'll find online. And do not concern yourself about how you're going to pay for all of this treatment because right now that's the last thing you should concern yourself with...
Because everything will end up being taken care of on that end eventually and I'll give you some guidance on what you need to do, and where to find the assistance you will need to keep your financial situation from falling apart through multiple resources that provide financial assistance via grants from foundation charities who specialize in helping families in similar situations as your own as well as establishing successful fundraising platforms to help you generate and grow your fundraising efforts by doing all of the legwork so you can concentrate on supervising of the medical care your wife will need!
Why am I offering my help gratis? Because I was in your shoes once, and ever since I went through this experience and I didn't have the help available that's currently around for you... I was determined to help out anyone who was seeking some guidance in order to help them navigate through these proverbial white water rapids representing the complicated process in getting the proper help your wife is going to need in order to not only survive, but to also eventually become healthy and reinvigorated again for you and your family! It's sort of like paying it forward -CAPECHE?
So that's about it for now... Your homework will be to investigate what's available locally with respect to treatment options and ask the current doctor to refer her to specialists with the appropriate experience to treat your wife accordingly okay? I'll await your findings and your response and in the meantime I will gather some helpful resources in the form of web links assistance programs that will be helpful to you and your family as you begin this rather arduous journey through your wife's eventual new life... Don't depend on your healthcare provider to provide you with these resources I'll be sharing with you and anyone else who might find it useful for them to use also... Good luck and God Speed!
Respectfully,
Hank aka genotype1a
Part 2 of 2 of reply form genotype1a to my Lainey:
Throughout my time on the waiting list I almost passed over 20 times and each times I came back on my own or was resuscitated back to life within that 4 year time of waiting... And then I received the call and the rest turned out to be an 11 - 1/2 hour surgery in which I was clinically dead 4 times only to come back to life each time on my own! why/ because I never gave up and I never gave in! That's why! And I haven't given up since even though my health hasn't always cooperated throughout my post transplant new life of over 17 yrs. so far...
I have had too many complications to list in one post and I'm not going to try because it would require me to lose too much sleep if I attempted to list everything I have went through ever since! Already I'm becoming tired from all of the writing so far so I'm going to wrap up what I want to share with you and your wife so please bear with me fir just a little longer okay?
Now I wasn't the only reason for my 17 yr post liver transplant successful survival because I must give a huge amount of credit to my healht care providers who happened to be the best even though I didn't know they were ubtil later on when I was well enough to find out more about UPMC's Strazyl Transplant Institute... Many of the Centers of excellence throughout the country owe their existence to the expert training their doctors and other specialists received while on teaching fellowships @ UPMC or @ Cedar's Sinai out in LA and way back when all of htis expertise was in it's infancy, these two centers were responsible for training over 90% of all of hte transplant surgeons and specialist in the USA where most of them still practice their developed skills they learned there today!
So I'll echo what one of the prior posters said also by stating that you should try to find the very best liver specialists in your area by first doing a google search and then if you have any other questions regarding the process, please feel free to post here your concerns and I will try my best to help you seek the answers you need to know so that you journey begins as smoothly as possible and finding the best treatment environment for your wife as well as support information available to help you and your family cope throughout this very chaotic experience which you will eventually agree that I'm putting it very lightly when I describe it as an experience as opposed to a life changing series of events and experiences instead.lol What a runoff sentence!)
So don't waste any more time and start looking for hepatologist's located within your area and look up their expertise by comparing their successful outcomes based on what information and affiliations with transplant centers you'll find online. And do not concern yourself about how you're going to pay for all of this treatment because right now that's the last thing you should concern yourself with...
Because everything will end up being taken care of on that end eventually and I'll give you some guidance on what you need to do, and where to find the assistance you will need to keep your financial situation from falling apart through multiple resources that provide financial assistance via grants from foundation charities who specialize in helping families in similar situations as your own as well as establishing successful fundraising platforms to help you generate and grow your fundraising efforts by doing all of the legwork so you can concentrate on supervising of the medical care your wife will need!
Why am I offering my help gratis? Because I was in your shoes once, and ever since I went through this experience and I didn't have the help available that's currently around for you... I was determined to help out anyone who was seeking some guidance in order to help them navigate through these proverbial white water rapids representing the complicated process in getting the proper help your wife is going to need in order to not only survive, but to also eventually become healthy and reinvigorated again for you and your family! It's sort of like paying it forward -CAPECHE?
So that's about it for now... Your homework will be to investigate what's available locally with respect to treatment options and ask the current doctor to refer her to specialists with the appropriate experience to treat your wife accordingly okay? I'll await your findings and your response and in the meantime I will gather some helpful resources in the form of web links assistance programs that will be helpful to you and your family as you begin this rather arduous journey through your wife's eventual new life... Don't depend on your healthcare provider to provide you with these resources I'll be sharing with you and anyone else who might find it useful for them to use also... Good luck and God Speed!
Respectfully,
Hank aka genotype1a
Greetings!
My name is Hank and a little over 25 yrs ago I was diagnosed with Hepatitis C with cirrhosis of the liver and was treated with what was then a new drug for my condition called interferon back in 1991 and shortly after the first blood test specifically for HCV was approved for commercial use by doctors and blood collection centers to screen for HCV... I write this because I would like to give you a clue as to how long and how familiar with both HCV and cirrhosis a well as the diagnosis of ESLD @ decompensation of the liver...
First off, everybody is different and will react differently to having ESLD just because and a wide range of other factors also so there are no cookie cutter estimations in determining how long anyone has to live with ESLD because what may have been the overall health with one patient will usually be different from the next! You just cannot predict or guesstimate how long any person has once they have been diagnosed with ESLD and I must emphasize this because some folks may tell you otherwise...
I personally lasted for a little over 4 yrs before I required a liver transplant way back in 1997 and yet I knew many diagnosed with the very same condition as I myself had and some lasted longer than others and quite a few didn't have the good fortune of being in relatively good physical and mental health besides the initial diagnosis of ESLD... and everyone of us including myself developed or had a wide range of secondary illnesses as a direct or indirect result of the cirrhosis and the HCV infection as well as having either one or more unrelated health conditions that were previously to reaching ESLD - to have been stabilized for quite some time until the cirrhosis became ESLD and liver decompensation started... In other words everybody faired differently and the relatively healthier patients did manage to survive longer than patients with previous or existing co-morbidities once they reached ESLD W/ decompensation...
I for one knew that I was on borrowed time for quite some time prior to reaching ESLD and afterwards earned my nickname from the hepatologists and liver transplant surgeons @ UPMC's Starzyl Transplant Institute's Liver Transplant center where the best liver transplant doctor in the world have previously trained there prior to becoming directors or opening their own transplant centers all over the world and was one of only a total of 5 transplant centers of excellence that were training other surgeons to become experts in the field so many moons ago..
And also just so happened to be the transplant center that advanced the procedure of a liver transplant to being a very risky procedure with a generally poor prognosis to the first successful long term patient survivors of liver transplants due mainly because of the development of advanced immuno-suppressant medicines to mitigate organ graft rejection which was the main cause of transplant failures and deaths by both Thomas Strarzyl and John Fung who through the development and optimized use of the drug Prograf (Tacrolimus) which completely changed and improved both the transplanted patients survivor rates as well as their overall quality of life for not only liver transplants but also kidneys and made ir possible for other organs that were previously classified as too risky to be transplanted to becoming a very common surgical procedure and saving countless lives as a results...
Thomas Starzyl and John Fung are one of the father's of transplantation and both started performing these miracles @ the very hospital I ended up in when my esophageal varices ruptured and caused me to bleed internally along with losing just about every pint of blood I had inside of me because I was trnasfused with over 12 pints before i was stabilized enough to be eventually life flighted to UPMC's Presbyterian Hospital's ICU from Johnstown, PA where I initially was hospitalized from falling really ill and puking all sorts of blood out of me 2 a new construction power plant jobsite..
And once I was stabilized there without the need for a shunt or a TIPS procedure because of the expertise of the Hepatologists @ upmc whp patched me up with a surgical form of super glue which closed my ruptured varices and were able to reduce the blood pressure and volume by carefully prescribing me various drugs which lowered both my blood pressure and volume around my varices without the need for any type of re-routing of the blood from them via surgical modifications...
I was then told that I will probably need a liver transplant in a few years but they cannot accurately predict how long it would take before I reached that stage bu he did stress that patients with my condition didn't usually have the option of avoiding one so it was inevitable and that I should get evaluated to see if I would be eligible to placed on the center's waiting UNOS list... So after I was discharged I was scheduled to be evaluated and was listed shortly thereafter and had to undergo a series of seminars and session in order to prepare patients for their eventual transplant surgery and what to expect afterwards... Part one of two because I initially exceeded the 8000 character limit... To be continued in Part 2 of 2.
My name is Hank and a little over 25 yrs ago I was diagnosed with Hepatitis C with cirrhosis of the liver and was treated with what was then a new drug for my condition called interferon back in 1991 and shortly after the first blood test specifically for HCV was approved for commercial use by doctors and blood collection centers to screen for HCV... I write this because I would like to give you a clue as to how long and how familiar with both HCV and cirrhosis a well as the diagnosis of ESLD @ decompensation of the liver...
First off, everybody is different and will react differently to having ESLD just because and a wide range of other factors also so there are no cookie cutter estimations in determining how long anyone has to live with ESLD because what may have been the overall health with one patient will usually be different from the next! You just cannot predict or guesstimate how long any person has once they have been diagnosed with ESLD and I must emphasize this because some folks may tell you otherwise...
I personally lasted for a little over 4 yrs before I required a liver transplant way back in 1997 and yet I knew many diagnosed with the very same condition as I myself had and some lasted longer than others and quite a few didn't have the good fortune of being in relatively good physical and mental health besides the initial diagnosis of ESLD... and everyone of us including myself developed or had a wide range of secondary illnesses as a direct or indirect result of the cirrhosis and the HCV infection as well as having either one or more unrelated health conditions that were previously to reaching ESLD - to have been stabilized for quite some time until the cirrhosis became ESLD and liver decompensation started... In other words everybody faired differently and the relatively healthier patients did manage to survive longer than patients with previous or existing co-morbidities once they reached ESLD W/ decompensation...
I for one knew that I was on borrowed time for quite some time prior to reaching ESLD and afterwards earned my nickname from the hepatologists and liver transplant surgeons @ UPMC's Starzyl Transplant Institute's Liver Transplant center where the best liver transplant doctor in the world have previously trained there prior to becoming directors or opening their own transplant centers all over the world and was one of only a total of 5 transplant centers of excellence that were training other surgeons to become experts in the field so many moons ago..
And also just so happened to be the transplant center that advanced the procedure of a liver transplant to being a very risky procedure with a generally poor prognosis to the first successful long term patient survivors of liver transplants due mainly because of the development of advanced immuno-suppressant medicines to mitigate organ graft rejection which was the main cause of transplant failures and deaths by both Thomas Strarzyl and John Fung who through the development and optimized use of the drug Prograf (Tacrolimus) which completely changed and improved both the transplanted patients survivor rates as well as their overall quality of life for not only liver transplants but also kidneys and made ir possible for other organs that were previously classified as too risky to be transplanted to becoming a very common surgical procedure and saving countless lives as a results...
Thomas Starzyl and John Fung are one of the father's of transplantation and both started performing these miracles @ the very hospital I ended up in when my esophageal varices ruptured and caused me to bleed internally along with losing just about every pint of blood I had inside of me because I was trnasfused with over 12 pints before i was stabilized enough to be eventually life flighted to UPMC's Presbyterian Hospital's ICU from Johnstown, PA where I initially was hospitalized from falling really ill and puking all sorts of blood out of me 2 a new construction power plant jobsite..
And once I was stabilized there without the need for a shunt or a TIPS procedure because of the expertise of the Hepatologists @ upmc whp patched me up with a surgical form of super glue which closed my ruptured varices and were able to reduce the blood pressure and volume by carefully prescribing me various drugs which lowered both my blood pressure and volume around my varices without the need for any type of re-routing of the blood from them via surgical modifications...
I was then told that I will probably need a liver transplant in a few years but they cannot accurately predict how long it would take before I reached that stage bu he did stress that patients with my condition didn't usually have the option of avoiding one so it was inevitable and that I should get evaluated to see if I would be eligible to placed on the center's waiting UNOS list... So after I was discharged I was scheduled to be evaluated and was listed shortly thereafter and had to undergo a series of seminars and session in order to prepare patients for their eventual transplant surgery and what to expect afterwards... Part one of two because I initially exceeded the 8000 character limit... To be continued in Part 2 of 2.
Hi
Just to let you know you post is not lost probably a lot of people busy with holidays so not so much here to respond.
So glad to hear there has been some improvement in her condition. I hope they can give you answers soon.
You are probably aware by now her confusion is another symptom of her liver disease called hepatic encepalopathy or HE. It is mostly the result of end eg levels of ammonia in her blood and is treated with Lactulose which caused soft bowel movements but should not be taken to the point of causing diarrhea as that could cause dehydration which can also trigger HE. The Lactulose help to remove excess ammonia from her system so she will be less confused.
Has there been any discussion of liver transplant? I have heard to be eligible for a liver transplant the patient has to be drug and alcohol free for at least 6 months.
You haven't said the cause of her cirrhosis so just guessing here. But it does sound like in order to survive she will need to have a transplant so hopefully the doctors are working with you on what needs to happen in order for her to either recover as much as possible or get on the transplant list.
Best to you both
Lynn
Just to let you know you post is not lost probably a lot of people busy with holidays so not so much here to respond.
So glad to hear there has been some improvement in her condition. I hope they can give you answers soon.
You are probably aware by now her confusion is another symptom of her liver disease called hepatic encepalopathy or HE. It is mostly the result of end eg levels of ammonia in her blood and is treated with Lactulose which caused soft bowel movements but should not be taken to the point of causing diarrhea as that could cause dehydration which can also trigger HE. The Lactulose help to remove excess ammonia from her system so she will be less confused.
Has there been any discussion of liver transplant? I have heard to be eligible for a liver transplant the patient has to be drug and alcohol free for at least 6 months.
You haven't said the cause of her cirrhosis so just guessing here. But it does sound like in order to survive she will need to have a transplant so hopefully the doctors are working with you on what needs to happen in order for her to either recover as much as possible or get on the transplant list.
Best to you both
Lynn
Thank you all so so much we are now end week 3 in hospital. There have been ups and downs. Some days if think she will be home in days others how long have we got. It got to a point I contacted her family she has been basically estranged from for years. BUT we are getting there I hope. The jaundice is slowly getting better her confusion is sometimes good but has been awful. She is starting to look better in herself still can't tie the doctors down to some answers. I am on a mission tomorrow to get some answers. Thank you all for your guidance, advice and hope. She is not only my wife but my best friend and I am lost without her so hope of a future is amazing. I wish you all a very happy and prosperous new year may 2015 be great for us all
My-Lainy. Hearing end stage liver disease can be frightening and totally overwhelming to say the least. Everyone has given you great advise and personal perspectives.
Just wanted to add that I hope you will stay with us thru your wife's journey should you need emotional support. Most of us including myself have liver disease. This is not the end and can actually be a new beginning for many of us. We are here for you should you have questions or concerns.
Best Wishes
....Kim
Just wanted to add that I hope you will stay with us thru your wife's journey should you need emotional support. Most of us including myself have liver disease. This is not the end and can actually be a new beginning for many of us. We are here for you should you have questions or concerns.
Best Wishes
....Kim
First off, I am sorry for the news.
Second, Do not Panic. She can have different levels of this and she can also live a very long time with the appropriate care and medications and changes in life.
I was given 3-6 months to live in 2008 and I am stable and going strong. I was in a COMA at the hospital and woke to two woman from "hospice" sitting in my room. Now, remember, COMA so I had no idea where I was. Upon asking these two ladies who they were and why they were here I was given the following response, " We are from Hospice. You have End Stage Liver Failure and three to six months to live"
What a doozie that was. When my husband came along after I was buzzing the red button for the nurse over and over trying to find out what the heck was going on, it was he who explained it all to me.
I had been unconscious at home when my son arrived home from school several weeks earlier, brought into the ER and he had been waiting for me to come to. He had been advised the day this occurred that I would be dead by morning and to call the family and chaplone.
Well, here I am, today, still kicking. Still taking those liver meds. Still going to the University and my primary each month.
There is so much to learn and so much to change.
Don't let anyone tell you to plan a funeral.
Get the medications needed, not one drip of alcohol and eat healthy.
For the first six months to 2 years weird things will happen with her ammonia levels. She may visit the hospital numerous times. If she is confused or you cannot seem to wake her take her to the ER ASAP. The ammonia has built up. She may need an adjustment on her Lactulose or other meds.
She will be tired, she will get other ailments from her immunity being compromised.
But the bottom line is that she could have many years left! Take this time to learn as much as you can. If you do not have a doctor who specializes in Hepatology, get one fast.
If you do not like or understand or feel that your questions are answered, go to another one.
Just today, I was released from a short stay at the hospital. Not liver related at all. The most amazing part of this stay is that the EXACT same doctor who diagnosed me all these years ago was there! He was tagged by my last name or something and came and found me. Took the usual fabulous care of me and hugged me when I left. Which was after he said,
" I just cannot believe I told your husband six years ago to call the chaplone and family that you would be dead by morning."
We both cried.
It is not the end of the world, please understand that. I will be happy to answer any questions you may have from my experience living with this. Feel free to contact me at anytime!
God Bless you and The best of luck to the both of you.
Second, Do not Panic. She can have different levels of this and she can also live a very long time with the appropriate care and medications and changes in life.
I was given 3-6 months to live in 2008 and I am stable and going strong. I was in a COMA at the hospital and woke to two woman from "hospice" sitting in my room. Now, remember, COMA so I had no idea where I was. Upon asking these two ladies who they were and why they were here I was given the following response, " We are from Hospice. You have End Stage Liver Failure and three to six months to live"
What a doozie that was. When my husband came along after I was buzzing the red button for the nurse over and over trying to find out what the heck was going on, it was he who explained it all to me.
I had been unconscious at home when my son arrived home from school several weeks earlier, brought into the ER and he had been waiting for me to come to. He had been advised the day this occurred that I would be dead by morning and to call the family and chaplone.
Well, here I am, today, still kicking. Still taking those liver meds. Still going to the University and my primary each month.
There is so much to learn and so much to change.
Don't let anyone tell you to plan a funeral.
Get the medications needed, not one drip of alcohol and eat healthy.
For the first six months to 2 years weird things will happen with her ammonia levels. She may visit the hospital numerous times. If she is confused or you cannot seem to wake her take her to the ER ASAP. The ammonia has built up. She may need an adjustment on her Lactulose or other meds.
She will be tired, she will get other ailments from her immunity being compromised.
But the bottom line is that she could have many years left! Take this time to learn as much as you can. If you do not have a doctor who specializes in Hepatology, get one fast.
If you do not like or understand or feel that your questions are answered, go to another one.
Just today, I was released from a short stay at the hospital. Not liver related at all. The most amazing part of this stay is that the EXACT same doctor who diagnosed me all these years ago was there! He was tagged by my last name or something and came and found me. Took the usual fabulous care of me and hugged me when I left. Which was after he said,
" I just cannot believe I told your husband six years ago to call the chaplone and family that you would be dead by morning."
We both cried.
It is not the end of the world, please understand that. I will be happy to answer any questions you may have from my experience living with this. Feel free to contact me at anytime!
God Bless you and The best of luck to the both of you.
My dear friend has already had a shunt put in several years ago. she has moved to Alaska been eating good foods however,
She seems to be sick a lot. Could this possible be due to her shunt?
What are the symptoms of it blocking or what? What ?'s should I ask her beings I'm in Oregon.
She seems to be sick a lot. Could this possible be due to her shunt?
What are the symptoms of it blocking or what? What ?'s should I ask her beings I'm in Oregon.
I remember how scared I was when I found out I had cirrhosis and especially how ominous the phrase End State Liver Disease sounded to me. That was about three years ago and it is quite possible I had cirrhosis a few years before that diagnosis because I hadn't had an ultrasound in quite some time. The point I'm making is that you can live over 20 years with a diagnosis of cirrhosis. It all depends. Then again, if a person keeps drinking or eating an unhealthy diet or taking too many meds, they may not have too long. Each of us is different. The biggest thing I wish someone had told me upon diagnosis is that no one knows how long we have. Instead, I was using Indian Health in a rural setting and my doctor led me to believe my days were seriously numbered. Not so.
As has been said already, there are signs that can tell you how bad off, or good off, your liver is such as MELD score or side effects.The thing that has helped me the most is listening to others on this and other forums. They have a lot of information and knowledge but it is important to remember that people are people and as such some of us can be mistaken with what we share.
What I've done is when I read something someone has said that I believe pertains to me, I do a search of the scholarly journals to see if they are correct. Also, there are some really good blogs with a ton of information.
Good luck to you and take care and remember there is hope for your wife.
As has been said already, there are signs that can tell you how bad off, or good off, your liver is such as MELD score or side effects.The thing that has helped me the most is listening to others on this and other forums. They have a lot of information and knowledge but it is important to remember that people are people and as such some of us can be mistaken with what we share.
What I've done is when I read something someone has said that I believe pertains to me, I do a search of the scholarly journals to see if they are correct. Also, there are some really good blogs with a ton of information.
Good luck to you and take care and remember there is hope for your wife.
I only read in this forum but your post touched me as I've "been there, done that" this past year. Early this year my husband was hospitalized with bleeding varices. That night, after his emergency endoscopy, I was sent home with the news that he had less than a 50% chance to make it through the year if he continued to drink. I too was in shock. As I laid alone in our bed that night I cried a lot, thinking that maybe this was how my life would be, all alone, without him. I started reading everything I could on the topic and I'm still a frequent reader on this forum.
My husband quit drinking that day. Hasn't had a drop since. I guess the doctors scared him too - not to mention that throwing up blood is a pretty scary experience. He's had a couple more bandings done and is on Nadonol and Pantoprazole (sp). 6 months after his emergency hospital visit we finally got to go to the transplant evaluation where, after testing, he was found to be too healthy to be put on the list at this point.
He's doing great and is happy that his life is no longer controlled by alcohol. He can never drink again as one relapse could kill him. It's taken a while but he's more energetic and ready to take on life again, finally able to use his full potential that has been reduced by alcohol for so long. Despite the scary roller coaster this past year took us on our life is so much better today than it was a year ago.
There's hope. You need to be strong for your wife. Support and love her. Be her advocate. Make sure she knows how much she means to you. A strong support system is very important, not only for your wife, but also in the eyes of the transplant evaluation system.
My husband quit drinking that day. Hasn't had a drop since. I guess the doctors scared him too - not to mention that throwing up blood is a pretty scary experience. He's had a couple more bandings done and is on Nadonol and Pantoprazole (sp). 6 months after his emergency hospital visit we finally got to go to the transplant evaluation where, after testing, he was found to be too healthy to be put on the list at this point.
He's doing great and is happy that his life is no longer controlled by alcohol. He can never drink again as one relapse could kill him. It's taken a while but he's more energetic and ready to take on life again, finally able to use his full potential that has been reduced by alcohol for so long. Despite the scary roller coaster this past year took us on our life is so much better today than it was a year ago.
There's hope. You need to be strong for your wife. Support and love her. Be her advocate. Make sure she knows how much she means to you. A strong support system is very important, not only for your wife, but also in the eyes of the transplant evaluation system.
Here is a link to a web MD article about cirrhosis and ESLD. I just want to stress depending on how ill you wife is she could survive for quite a while with ESLD with proper care, diet and treatment for symptoms as they arise until she can get a transplant so all hope is not lost...
http://www.m.webmd.com/a-to-z-guides/cirrhosis-liver
http://www.m.webmd.com/a-to-z-guides/cirrhosis-liver
Hi
So sorry to hear of your wife's condition. I don't know how much help I can be. But I do know many here have said you really cannot predict progression of ESLD so nearly impossible to say if she has days, weeks, months or a year or more especially without knowing more about her symptoms.
However we here are not doctors but rather either patients with cirrhosis or caregivers for them.
Is she a candidate for a liver transplant? I have heard to be eligible amoung many other things the person has to be free from alcohol or any illegal drugs for at least 6 months plus many other criteria as far as overall health and having support to help post transplant which it does sound like you have the support part covered.
I hope you have more information now or very soon. Things to know would be her MELD (Model for End Stage Liver Disease) that is how patients are ranked for transplant based on the value of that test which is derived from her Bilirubin levels, her INR (blood clotting time) and Creatinine test results. Most people who are transplanted I think are often in the 30 point range the scale is 6 to 40 to even be listed depending on the center usually need at least 12 to 16 points.
So she needs to abstain from alcohol and get evaluated for a transplant. Most importantly she needs to be under the care of a hepatologist at a transplant center in order to receive the best care with her current medical condition.
Good luck to you both
Lynn
So sorry to hear of your wife's condition. I don't know how much help I can be. But I do know many here have said you really cannot predict progression of ESLD so nearly impossible to say if she has days, weeks, months or a year or more especially without knowing more about her symptoms.
However we here are not doctors but rather either patients with cirrhosis or caregivers for them.
Is she a candidate for a liver transplant? I have heard to be eligible amoung many other things the person has to be free from alcohol or any illegal drugs for at least 6 months plus many other criteria as far as overall health and having support to help post transplant which it does sound like you have the support part covered.
I hope you have more information now or very soon. Things to know would be her MELD (Model for End Stage Liver Disease) that is how patients are ranked for transplant based on the value of that test which is derived from her Bilirubin levels, her INR (blood clotting time) and Creatinine test results. Most people who are transplanted I think are often in the 30 point range the scale is 6 to 40 to even be listed depending on the center usually need at least 12 to 16 points.
So she needs to abstain from alcohol and get evaluated for a transplant. Most importantly she needs to be under the care of a hepatologist at a transplant center in order to receive the best care with her current medical condition.
Good luck to you both
Lynn
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