Aa
non alcoholic cirrhosis
I was diagnosed a year ago with stage 4 liver cirrhosis, discovered as a result of surgery to remove my gall bladder. This was a shock as my liver enzymes and blood work have always been normal. Almost right away I started seeing a naturopathic physician and have done genetic testing and have been working on reducing medications and doing liver detox. My GI doc said he is a hepatologist and he told me there is no treatment - his job is to check every 6 months for complications and treat any that arise. That didn't seem like enough to me which is why I started seeing the naturopath. Recently I suffered for a month with intense itching. My GI doc said it is not from the liver as it is not just in the upper part of my body. This doesn't make sense to me. I have reduced the itching significantly by doing a very restricted detox diet. This makes me pretty certain the itching is caused by my liver. My GI doc also said that all of my efforts with the naturopathic physician and the supplements will make no difference.
Other medical conditions - diabetic with A1C of 6.1, high blood pressure, high cholesterol and obesity. I take metformin, insulin and blood pressure meds. I am 66 years old and have felt overall well.
So my questions are -- ( sorry - I have a few of them)
Should I also be seeing a hematologist?
Is my GI doc right in saying the efforts with supplements and detox will not make a difference?
Does the recent itching mean that my liver has worsened?
Is it correct that life expectancy at the point of diagnosis for stage 4 is 1 to 3 years?
Should I be talking to someone about transplant?
Am I too old to be considered for a transplant?
Thank you for your help -- I am willing to do whatever I need to do - I just don't know what it is I should be doing.
Other medical conditions - diabetic with A1C of 6.1, high blood pressure, high cholesterol and obesity. I take metformin, insulin and blood pressure meds. I am 66 years old and have felt overall well.
So my questions are -- ( sorry - I have a few of them)
Should I also be seeing a hematologist?
Is my GI doc right in saying the efforts with supplements and detox will not make a difference?
Does the recent itching mean that my liver has worsened?
Is it correct that life expectancy at the point of diagnosis for stage 4 is 1 to 3 years?
Should I be talking to someone about transplant?
Am I too old to be considered for a transplant?
Thank you for your help -- I am willing to do whatever I need to do - I just don't know what it is I should be doing.
COMMUNITY LEADER
Should I also be seeing a hematologist?
No, a hematologist is a specialist in blood diseases.
You need to see a hepatologist... a specialist in liver disease. A doctor who is found at a liver transplant center where they care from people with cirrhosis on a daily basis. A GI is not a hepatologist unless he had years of additional training and works at a liver transplant center as is part of a liver transplant team of doctors.
Is my GI doc right in saying the efforts with supplements and detox will not make a difference?
- Yes.
- The only way to stop cirrhosis is to address and treat the underlying cause of the liver disease. Otherwise you are wasting your time and money as while your liver disease continues only to get worse.
What is the cause of your cirrhosis? You didn't say except to say "non alcoholic cirrhosis". Do you mean NAFLD (Non-Alcoholic Fatty Lliver Disease)?
Some causes can be treated (such as hepatitis B or C or for alcohol cirrhosis a person can stop drinking) others have no treatment. For some people such as those that have autoimmune diseases for example there may be little they can do.
But in all cases the cirrhosis and its complications can be managed no matter what the cause and its complications can be controlled to some degree until the liver gets close to failure at which point a person will need a liver transplant to continue living.
Does the recent itching mean that my liver has worsened?
-Itching (medically speaking "pruritus") from liver disease is a result of bile getting into the skin which is caused by high blood bilirubin levels (easily checked with a simple blood test) plus the person's eyes and skin are usually yellow to some degree as well from the high bilirubin level.
Is it correct that life expectancy at the point of diagnosis for stage 4 is 1 to 3 years?
- No.
How long a person's liver will continue to function varies from person to person. People typically can live with cirrhosis for many years. Obviously it all depends on how advance their cirrhosis is. Early cirrhosis can have no symptoms and normal blood levels. Advanced, decompensated cirrhosis is a life-threatening condition with many body systems failing and serious complications such as ascites, internal bleeding and kidney failure. I had cirrhosis for at least 6 years (when I was first diagnosed with cirrhosis) before I got my liver transplant for example.
Should I be talking to someone about transplant?
- First you need an evaluation of your liver disease to determine how advanced it is and what can be done if anything to stop it from progressing so that you will at some time in the future need a liver transplant. Not everyone with cirrhosis will need a transplant. So people, for example people with hepatitis C can be cured and their liver's can heal themselves and they won't need a transplant.
I would suggest you make an appointment with the nearest liver transplant center and get your liver disease evaluated so you can do something about it before things get worse and is more difficult to deal with.
Am I too old to be considered for a transplant?
- The standard cutoff age for liver transplant at most liver transplant centers is 70 years old but like all things it varies form person to person. Some 70 year olds are pretty healthy other than their liver disease others are not.
Make no mistake about it, cirrhosis not treated or improperly treated over time can become a life-threatening disease. Only by getting a proper medical diagnosis will you know the facts about your liver disease and what you can do to live as healthy as you can for as long as you can.
No naturopath or GI has the knowledge nor experience to properly treat people with cirrhosis of the liver and its complications. Make an appointment for an evaluation of your liver disease with your nearest liver transplant center and get the real medical health you need.
Be well.
Hector
No, a hematologist is a specialist in blood diseases.
You need to see a hepatologist... a specialist in liver disease. A doctor who is found at a liver transplant center where they care from people with cirrhosis on a daily basis. A GI is not a hepatologist unless he had years of additional training and works at a liver transplant center as is part of a liver transplant team of doctors.
Is my GI doc right in saying the efforts with supplements and detox will not make a difference?
- Yes.
- The only way to stop cirrhosis is to address and treat the underlying cause of the liver disease. Otherwise you are wasting your time and money as while your liver disease continues only to get worse.
What is the cause of your cirrhosis? You didn't say except to say "non alcoholic cirrhosis". Do you mean NAFLD (Non-Alcoholic Fatty Lliver Disease)?
Some causes can be treated (such as hepatitis B or C or for alcohol cirrhosis a person can stop drinking) others have no treatment. For some people such as those that have autoimmune diseases for example there may be little they can do.
But in all cases the cirrhosis and its complications can be managed no matter what the cause and its complications can be controlled to some degree until the liver gets close to failure at which point a person will need a liver transplant to continue living.
Does the recent itching mean that my liver has worsened?
-Itching (medically speaking "pruritus") from liver disease is a result of bile getting into the skin which is caused by high blood bilirubin levels (easily checked with a simple blood test) plus the person's eyes and skin are usually yellow to some degree as well from the high bilirubin level.
Is it correct that life expectancy at the point of diagnosis for stage 4 is 1 to 3 years?
- No.
How long a person's liver will continue to function varies from person to person. People typically can live with cirrhosis for many years. Obviously it all depends on how advance their cirrhosis is. Early cirrhosis can have no symptoms and normal blood levels. Advanced, decompensated cirrhosis is a life-threatening condition with many body systems failing and serious complications such as ascites, internal bleeding and kidney failure. I had cirrhosis for at least 6 years (when I was first diagnosed with cirrhosis) before I got my liver transplant for example.
Should I be talking to someone about transplant?
- First you need an evaluation of your liver disease to determine how advanced it is and what can be done if anything to stop it from progressing so that you will at some time in the future need a liver transplant. Not everyone with cirrhosis will need a transplant. So people, for example people with hepatitis C can be cured and their liver's can heal themselves and they won't need a transplant.
I would suggest you make an appointment with the nearest liver transplant center and get your liver disease evaluated so you can do something about it before things get worse and is more difficult to deal with.
Am I too old to be considered for a transplant?
- The standard cutoff age for liver transplant at most liver transplant centers is 70 years old but like all things it varies form person to person. Some 70 year olds are pretty healthy other than their liver disease others are not.
Make no mistake about it, cirrhosis not treated or improperly treated over time can become a life-threatening disease. Only by getting a proper medical diagnosis will you know the facts about your liver disease and what you can do to live as healthy as you can for as long as you can.
No naturopath or GI has the knowledge nor experience to properly treat people with cirrhosis of the liver and its complications. Make an appointment for an evaluation of your liver disease with your nearest liver transplant center and get the real medical health you need.
Be well.
Hector
Good luck with the transplant center in NYC. By the way, they do not require a doctor referral to schedule an appointment. They New York Presbyterian Hospital liver transplant center has another location uptown:
NEWYORK-PRESBYTERIAN/COLUMBIA CENTER FOR LIVER DISEASE & TRANSPLANTATION
(877) liver-md
Oops--you probably already know all of this by now...you posted almost 15 days ago.
NEWYORK-PRESBYTERIAN/COLUMBIA CENTER FOR LIVER DISEASE & TRANSPLANTATION
(877) liver-md
Oops--you probably already know all of this by now...you posted almost 15 days ago.
COMMUNITY LEADER
To see a hepatologist (a liver specialist) you must go to a liver transplant center. Hepatologist work with people who many times have advanced liver disease and people who are awaiting liver transplantation.
In New York state the major liver transplant centers are located in New York City. You will probably need a referral from your primary doctor to get an appointment.
Here is info on the liver transplant centers in NYC which if I where in New York I would go to. They will have the most experienced and knowledgeable hepatologist there.
Center: Mount Sinai Medical Center (NYMS)
Mount Sinai Liver
The Division of Liver Diseases at The Mount Sinai Hospital has been at the forefront of groundbreaking advances in the detection and treatment of liver diseases for more than half a century. They provide care for all types of acute and chronic liver diseases including hepatitis B and C, liver cancer and cirrhosis.
5 East 98th Street, 11th Floor
New York, NY 10029
Tel: 212-241-7270
NewYork-Presbyterian/Weill Cornell
Gastroenterology and Hepatology
525 East 68th Street
New York, NY 10065
(646) 962-4463
I would contact either Mount Sinai or NY Presbyterian Hospital and get an evaluation of your liver disease. Then you can learn what you can do to best manage it based on the latest medical knowledge.
Take care.
Hector
In New York state the major liver transplant centers are located in New York City. You will probably need a referral from your primary doctor to get an appointment.
Here is info on the liver transplant centers in NYC which if I where in New York I would go to. They will have the most experienced and knowledgeable hepatologist there.
Center: Mount Sinai Medical Center (NYMS)
Mount Sinai Liver
The Division of Liver Diseases at The Mount Sinai Hospital has been at the forefront of groundbreaking advances in the detection and treatment of liver diseases for more than half a century. They provide care for all types of acute and chronic liver diseases including hepatitis B and C, liver cancer and cirrhosis.
5 East 98th Street, 11th Floor
New York, NY 10029
Tel: 212-241-7270
NewYork-Presbyterian/Weill Cornell
Gastroenterology and Hepatology
525 East 68th Street
New York, NY 10065
(646) 962-4463
I would contact either Mount Sinai or NY Presbyterian Hospital and get an evaluation of your liver disease. Then you can learn what you can do to best manage it based on the latest medical knowledge.
Take care.
Hector
COMMUNITY LEADER
Elaine,
Being nervous is totally normally. You are going into somethings new and you don't know what to expect. I think you will find that there are many caring good doctors and staff at UW who work with people with liver disease on a daily basis. They are experts in working with people and helping them to best manage their disease so they can stay as healthy as they can, for as long as they can.
Most people live many years with cirrhosis. Early cirrhosis doesn't even have any symptoms so many people with early cirrhosis don't even know that they are ill. Even after liver decompensation, with the addition of complications such as ascites, HE, bleeding varices, we can hang on long enough to get a transplant and a new liver and a new life. That is what many people on liver transplant waiting lists do every day. Every week I see new people getting listed for liver transplant at my center. I waited for 4 years and 2 1/2 years fighting liver cancer before I got my transplant. Anyone who tells you different knows nothing of the reality of advanced liver disease.
Good luck with your appointment!
Let me know what you learn.
Hector
Being nervous is totally normally. You are going into somethings new and you don't know what to expect. I think you will find that there are many caring good doctors and staff at UW who work with people with liver disease on a daily basis. They are experts in working with people and helping them to best manage their disease so they can stay as healthy as they can, for as long as they can.
Most people live many years with cirrhosis. Early cirrhosis doesn't even have any symptoms so many people with early cirrhosis don't even know that they are ill. Even after liver decompensation, with the addition of complications such as ascites, HE, bleeding varices, we can hang on long enough to get a transplant and a new liver and a new life. That is what many people on liver transplant waiting lists do every day. Every week I see new people getting listed for liver transplant at my center. I waited for 4 years and 2 1/2 years fighting liver cancer before I got my transplant. Anyone who tells you different knows nothing of the reality of advanced liver disease.
Good luck with your appointment!
Let me know what you learn.
Hector
When I read clark235, it seems I have a similar GI Doctor. I thought I need to see a liver specialist. Could you suggest me a specialist in the area of upstate NY.
1 Comments
I have a dear friend whose GI specialist said the same thing. No need to see a specialist..schedule follow-up visit in 6 months. Turns out, my friend needs a liver transplant. If she'd heeded the advice of the GI doctor, she'd be significantly deteriorated by now.
thanks again Hector.
I'm writing today to tell you that this morning I got scheduled with the UW liver clinic - it took a couple of weeks to get to the scheduling phase.
I'm definitely nervous -- at stage 4 I'm just not sure how much to hope for. The surgeon told me a year ago that he wouldn't even say with confidence that I had 3 or 4 years left.
I wish I had found this forum - and you - a year ago --- I would have already been working with the UW clinic.
I'm a fighter tho - won't go down without giving it all I have. funny, that characteristic got me in trouble sometimes in my life -- now it may actually keep my life going,
I am more grateful to you than I could ever say.
stay well my friend . I'll keep you posted
Elaine
I'm writing today to tell you that this morning I got scheduled with the UW liver clinic - it took a couple of weeks to get to the scheduling phase.
I'm definitely nervous -- at stage 4 I'm just not sure how much to hope for. The surgeon told me a year ago that he wouldn't even say with confidence that I had 3 or 4 years left.
I wish I had found this forum - and you - a year ago --- I would have already been working with the UW clinic.
I'm a fighter tho - won't go down without giving it all I have. funny, that characteristic got me in trouble sometimes in my life -- now it may actually keep my life going,
I am more grateful to you than I could ever say.
stay well my friend . I'll keep you posted
Elaine
COMMUNITY LEADER
Congratulations for taking the first HUGE step toward getting the care you need and deserve. I can assure you that once you get into their system at UW you will learn that there are many folks living with NAFLD, cirrhosis and even genetic mutations. And the doctors there are THE experts in managing these conditions with the latest treatments.
Stay hopeful. Our mind is a power thing. With it we can deal with just about anything that comes our way.
Being stage 4...Unfortunately many times liver disease goes undetected for decades before being diagnosed. As in the early stages there are usually no symptoms and blood labs can be normal, even with early cirrhosis.
It is normal to be worried and scared. We all were scared when we got our diagnosis. It takes time to come to terms with the diagnosis and the change that has occurred in our lives. It doesn't happen in a day or a week but over time we can learn to live with our diseases and learn how to take care of both or mind and body.
If you want to look on the bright side.. let's be thankful your liver disease was caught early, before it became life-threatening and was irreversible. I have seen people come into our transplant center close to death because it wasn't caught earlier.
NAFLD is becoming a more common cause of cirrhosis these days so more research is being done in that area and treatment options are improving. So progress is being made and will continue to be made in the coming years.
Remember there are things that you can do to manage your NAFLD and cirrhosis. Your hepatologist will work with you to help you manage it. Myself and many of my friends lived for many years with our cirrhosis and liver disease (hep C, liver cancer). It wasn't always pretty but we got by one day at a time. So I can tell you from personal experience... recovery from even the worse liver disease can be done. There is good medical people out there who will help you.
If you ever have any questions or concerns feel free to contact me.
Hector
Stay hopeful. Our mind is a power thing. With it we can deal with just about anything that comes our way.
Being stage 4...Unfortunately many times liver disease goes undetected for decades before being diagnosed. As in the early stages there are usually no symptoms and blood labs can be normal, even with early cirrhosis.
It is normal to be worried and scared. We all were scared when we got our diagnosis. It takes time to come to terms with the diagnosis and the change that has occurred in our lives. It doesn't happen in a day or a week but over time we can learn to live with our diseases and learn how to take care of both or mind and body.
If you want to look on the bright side.. let's be thankful your liver disease was caught early, before it became life-threatening and was irreversible. I have seen people come into our transplant center close to death because it wasn't caught earlier.
NAFLD is becoming a more common cause of cirrhosis these days so more research is being done in that area and treatment options are improving. So progress is being made and will continue to be made in the coming years.
Remember there are things that you can do to manage your NAFLD and cirrhosis. Your hepatologist will work with you to help you manage it. Myself and many of my friends lived for many years with our cirrhosis and liver disease (hep C, liver cancer). It wasn't always pretty but we got by one day at a time. So I can tell you from personal experience... recovery from even the worse liver disease can be done. There is good medical people out there who will help you.
If you ever have any questions or concerns feel free to contact me.
Hector
I made contact with the UW - Harborview is part of their system so I may end up there. I have had my records sent over and now wait for them to call and schedule me.
You're right -- I never thought I could go to a specialty clinic since I'm not at the transplant stage.
I'm scared but hopeful. this diagnosis was a total sucker punch, and to be at stage 4 without ever knowing I had a problem is hard to cope with. The only time I ever had liver blood work out of whack was about 20 years ago and I always remember the conversation because it was so ridiculous - the doctor told me I would have to stop drinking - I told her I didn't drink and her response was "well, you will have to stop". Nothing else was ever said to me. And now here I am. I'm actually a bit angry about that.
Thank you and Kim for the support - it means a lot.
Elaine
You're right -- I never thought I could go to a specialty clinic since I'm not at the transplant stage.
I'm scared but hopeful. this diagnosis was a total sucker punch, and to be at stage 4 without ever knowing I had a problem is hard to cope with. The only time I ever had liver blood work out of whack was about 20 years ago and I always remember the conversation because it was so ridiculous - the doctor told me I would have to stop drinking - I told her I didn't drink and her response was "well, you will have to stop". Nothing else was ever said to me. And now here I am. I'm actually a bit angry about that.
Thank you and Kim for the support - it means a lot.
Elaine
COMMUNITY LEADER
I am glad that I could help.
That is great that you are near the University of Washington definitely give their "Liver Care and Transplantation Services" a call and get an appointment to see someone for an evaluation. Let them know about your liver disease situation (NAFLD & genetic mutation). If you have copies of some of your blood/lab tests you should bring them along to your appointment.
Hepatitis and Liver Clinic at Harborview
(Specializes in treatment of Non-alcoholic Fatty Liver Disease)
410 9th Ave., Seattle, WA 98104
Phone: 206.520.5000
Getting care for advance liver disease is a very confusing maze to navigate. I think most people think that liver transplant centers are only for people needing transplants. Actually they care for lots of folks who don't need transplants, but want the latest and best liver disease care there is. The doctors there work as a team, so if they need input from someone about your genetic mutation and how it may effect your liver disease that is something they do as a regular part of how they work.
Luckily or unluckily I have had plenty of experience with many o sides of this disease both as a patient and as a volunteer with my liver transplant and oncology centers so I can help other navigate their way to the care they need.
Let me know how things go.
Hector
That is great that you are near the University of Washington definitely give their "Liver Care and Transplantation Services" a call and get an appointment to see someone for an evaluation. Let them know about your liver disease situation (NAFLD & genetic mutation). If you have copies of some of your blood/lab tests you should bring them along to your appointment.
Hepatitis and Liver Clinic at Harborview
(Specializes in treatment of Non-alcoholic Fatty Liver Disease)
410 9th Ave., Seattle, WA 98104
Phone: 206.520.5000
Getting care for advance liver disease is a very confusing maze to navigate. I think most people think that liver transplant centers are only for people needing transplants. Actually they care for lots of folks who don't need transplants, but want the latest and best liver disease care there is. The doctors there work as a team, so if they need input from someone about your genetic mutation and how it may effect your liver disease that is something they do as a regular part of how they work.
Luckily or unluckily I have had plenty of experience with many o sides of this disease both as a patient and as a volunteer with my liver transplant and oncology centers so I can help other navigate their way to the care they need.
Let me know how things go.
Hector
Clark. Of course Hector is fabulous and he knows his stuff. Going to the U of Wash would be a wise decision as they have the best means in which to help you.
Don't despair as I've lived with Cirrhosis for several years and have a good life. As Hector has said, if the reason that your liver is in trouble can be resolved your liver may in fact stop regression or even regenerate to some degree. At one point in my journey I was on a liver transplant list and once my Hep C was cured, I have since been removed from the list. That's why going to the experts is the best path for you to follow.
Medhelp is a great website and we are here to help you should you have any questions or concerns. It's kinda a labour of love to help others as at one point members of this site helped us. You can still live and maintain a good life even with Cirrhosis, but being monitered by the pros will assure your best outcome.
Best to you
......Kim
Don't despair as I've lived with Cirrhosis for several years and have a good life. As Hector has said, if the reason that your liver is in trouble can be resolved your liver may in fact stop regression or even regenerate to some degree. At one point in my journey I was on a liver transplant list and once my Hep C was cured, I have since been removed from the list. That's why going to the experts is the best path for you to follow.
Medhelp is a great website and we are here to help you should you have any questions or concerns. It's kinda a labour of love to help others as at one point members of this site helped us. You can still live and maintain a good life even with Cirrhosis, but being monitered by the pros will assure your best outcome.
Best to you
......Kim
thank you so much for this info. to answer your question - my cirrhosis is a result of fatty liver - which I was never told was a problem! and in addition, I have a genetic mutation causing cells in my body to not be able to detoxify normally - the buildup of toxins eventually causes damage.
My GI doc told me he is a hepatologist and said I don't need to go to see anyone else. I think now that I definitely need to see someone else!
I live about an hour from the University of Washington transplant center and I will be on the phone tomorrow !!
I can't thank you enough!. I've been trying to make my way without knowing where I need to go. I would not have thought of going to a transplant center since my liver is not yet failing.
I've seen a lot of your posts to people's concerns on this site and think that it's awesome that you are willing to be such a resource for people.
My GI doc told me he is a hepatologist and said I don't need to go to see anyone else. I think now that I definitely need to see someone else!
I live about an hour from the University of Washington transplant center and I will be on the phone tomorrow !!
I can't thank you enough!. I've been trying to make my way without knowing where I need to go. I would not have thought of going to a transplant center since my liver is not yet failing.
I've seen a lot of your posts to people's concerns on this site and think that it's awesome that you are willing to be such a resource for people.
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