Aa
I was told that my MELD is 13 and my CPT 7
Anyone know how long a person has with MELD 13 and CPT 7? I was told by my doctor that the
transplant is out of the question due to other medical problems, heart and lungs. I am not a drinker
so I keep asking how did I get this since no one in my family has had it that we know about.
I was hospitalized twice last year and , one time they removed 7 pints of fluid. It was then that they told me I have Portal Vein Thrombosis the blockage is 100% and been on blood thinners for over a year now and water pills daily.
Have so many questions, and just don't seem to get any. The liver specialist said all that will be said is that people have lived 3 months all the way to 10 years. I have heard so many things about dying from this and it is not the way
I think anyone should die like.
Have read about stem cell research, does anyone know about that too.
My brother has offered 1/2 of his for a transplant, don't feel comfortable because if anything happened to him
would kill me too. ( But the doctor said they would not even do that one as a transplant )
Thank You from ND
transplant is out of the question due to other medical problems, heart and lungs. I am not a drinker
so I keep asking how did I get this since no one in my family has had it that we know about.
I was hospitalized twice last year and , one time they removed 7 pints of fluid. It was then that they told me I have Portal Vein Thrombosis the blockage is 100% and been on blood thinners for over a year now and water pills daily.
Have so many questions, and just don't seem to get any. The liver specialist said all that will be said is that people have lived 3 months all the way to 10 years. I have heard so many things about dying from this and it is not the way
I think anyone should die like.
Have read about stem cell research, does anyone know about that too.
My brother has offered 1/2 of his for a transplant, don't feel comfortable because if anything happened to him
would kill me too. ( But the doctor said they would not even do that one as a transplant )
Thank You from ND
Pugdaddy answered you the best I can in a private message
Hope your having a good day.
Hope your having a good day.
Good Morning Advocate1955
She is the herpetologist, there just seems to be so many that are following me from that one a hematologist, and even an Oncologist ( that one scared me to have to go to that one because of the name ) There is no cancer but they just want to follow with.
OH they have done the CT's Ultrasounds MRI's and gallons of blood work. The thing up and the thing down to check for those veins things.
Yes I have Portal Vein Thrombosis with 100% blockage, they have me on blood thinners to maintain between 2.0 and 2.5 INR, Now they say it is crystallized but I will remain on blood thinners.
They have me scheduled every three months for something. So quite a social life with this. Ha Ha
She is the herpetologist, there just seems to be so many that are following me from that one a hematologist, and even an Oncologist ( that one scared me to have to go to that one because of the name ) There is no cancer but they just want to follow with.
OH they have done the CT's Ultrasounds MRI's and gallons of blood work. The thing up and the thing down to check for those veins things.
Yes I have Portal Vein Thrombosis with 100% blockage, they have me on blood thinners to maintain between 2.0 and 2.5 INR, Now they say it is crystallized but I will remain on blood thinners.
They have me scheduled every three months for something. So quite a social life with this. Ha Ha
I don't think you need to worry about offending anyone with your statement about not being a drinker. Not being a drinker is a good thing, when it comes to Cirrhosis. There are many different causes of Cirrhosis: fatty liver, viral hepatitis, alcoholic liver disease, and many others. Everyone on this forum either has Cirrhosis or has a loved one who does. The most important thing is now that you know that you have Cirrhosis, trying to find out, if you can, the cause of the Cirrhosis, so that you can treat whatever is causing it and hopefully stop or slow down the progression of the Cirrhosis. When you say you are seeing a liver specialist, I hope you mean a hepatologist. A hepatologist is the only type of doctor who is qualified to care for you given that you have Cirrhosis. You should not be seeing your primary care doctor or a gastroenterologist for your care. You need to be seen by a hepatologist. Generally speaking, when it is discovered that one has Cirrhosis, a hepatologist will order an ultrasound of the liver and perhaps a CT scan to be able to see the structure of the liver and determine how much the Cirrhosis has changed it. Also, generally speaking, a hepatologist will order a colonoscopy and an endoscopy to look at the health of other parts of the digestive tract to make sure there aren't other problems. Usually he/she will also order lots of blood work to look for changes in the liver enzymes, bilirubin, etc. All of this is done in an attempt to figure out what is causing the inflammation and scarring to the liver. It sounds like you have ascites (fluid build up due to portal hypertension). Your hepatologist should be able to help you manage this symptom of Cirrhosis with diet and medication. Again, the bottom line question is for your hepatologist to find out what is causing your Cirrhosis so that hopefully that can be treated in order to stop or slow down the progression of the Cirrhosis.
I know more about Hepatitis C than I do about other causes of Cirrhosis, so I can't help too much in the other areas.
If your liver specialist is not a hepatologist, find a hepatologist. If you are seeing a hepatologist and he can't explain the cause of your Cirrhosis, find another hepatologist.
Advocate1955
I know more about Hepatitis C than I do about other causes of Cirrhosis, so I can't help too much in the other areas.
If your liver specialist is not a hepatologist, find a hepatologist. If you are seeing a hepatologist and he can't explain the cause of your Cirrhosis, find another hepatologist.
Advocate1955
about did not drink so was wondering I did not want to offend any one with that statement, please forgive me
Hi yes a friend of mine had it pretty bad too and he said they gave him a triangle pill for 6 months and according to him it is on hold even got a little better.
He could not remember what it was that they gave him but he is going to see if he can find out it was experimental. A doctor friend of mine told me about milk thistle, which I started back in Nov 2012 before that I was having itching so bad I would scratch until I bleed. Now it doesn't bother me, don't really know if it is because of that or just the natural progression same as the pain that would go all the way thru to the back has gotten a lot less. My AST and ASL where high and now there in the normal range, but did not impress the doctors. I do see a hematologist and a liver specialist and MRi every 6 months and blood work every 3 months, Ultra sound every 6 months. Think someone wrote some where on here about doctor appointments. I understand like I told my doctors if it was not for seeing them so often I would not have a social life:)
My prayers are for all those on here and those that aren't on here that some time in the future a person would not have to go thru this.
Thank You
He could not remember what it was that they gave him but he is going to see if he can find out it was experimental. A doctor friend of mine told me about milk thistle, which I started back in Nov 2012 before that I was having itching so bad I would scratch until I bleed. Now it doesn't bother me, don't really know if it is because of that or just the natural progression same as the pain that would go all the way thru to the back has gotten a lot less. My AST and ASL where high and now there in the normal range, but did not impress the doctors. I do see a hematologist and a liver specialist and MRi every 6 months and blood work every 3 months, Ultra sound every 6 months. Think someone wrote some where on here about doctor appointments. I understand like I told my doctors if it was not for seeing them so often I would not have a social life:)
My prayers are for all those on here and those that aren't on here that some time in the future a person would not have to go thru this.
Thank You
Hector want to Thank You, and to tell you I pray every night for all those with this and hope that they can come up with something. I know about it each day at a time, as my Dad use to say a person could get hit and killed by a bus before this takes you.
I have done a lot of reading about it, and in India they are making great strides with it with the stem cell, I called there and talked to a doctor last fall he said they remove a few cells from the still working liver part, then alter it too stem cell, grow it in the lab and then reinsert it. they said that they are having about 80% positive results.
Hector will say a prayer for you every night too.
Thanks again
I have done a lot of reading about it, and in India they are making great strides with it with the stem cell, I called there and talked to a doctor last fall he said they remove a few cells from the still working liver part, then alter it too stem cell, grow it in the lab and then reinsert it. they said that they are having about 80% positive results.
Hector will say a prayer for you every night too.
Thanks again
Hector, your reply posted while I was still typing - otherwise I would have acknowledged your superior reply!! I noticed of course your comment about stem cell research - and your assessment 'squares' with all that I've heard regarding that particular subject.
If I may ask (Hector): have you heard anything about the galectin inhibitor antifibrotic that was presented at the Int'l Liver Congress in April? Human clinical trials commenced last month at six sites. Just wondering if there's any discernible optimism within the hepatologist community. I know that your doctor is a prominent one - and wondering, has she ever mentioned it?
If I may ask (Hector): have you heard anything about the galectin inhibitor antifibrotic that was presented at the Int'l Liver Congress in April? Human clinical trials commenced last month at six sites. Just wondering if there's any discernible optimism within the hepatologist community. I know that your doctor is a prominent one - and wondering, has she ever mentioned it?
Dear JST,
It is a very common misconception that cirrhosis is an alcoholics' disease. As your doctor may have already explained to you, the vast majority of alcoholics never get cirrhosis - and only a minority of cirrhosis patients are alcoholic. Indeed many cirrhosis patients have never consumed alcohol in their entire lives. There are many different causes of cirrhosis - and there are cases where no identifiable cause can be found or pinpointed. In all likelihood you never "did anything" to cause your condition. Welcome to this group - it is a very nice one, with lots of generous people who genuinely care. We're glad that you found us!!
It is a very common misconception that cirrhosis is an alcoholics' disease. As your doctor may have already explained to you, the vast majority of alcoholics never get cirrhosis - and only a minority of cirrhosis patients are alcoholic. Indeed many cirrhosis patients have never consumed alcohol in their entire lives. There are many different causes of cirrhosis - and there are cases where no identifiable cause can be found or pinpointed. In all likelihood you never "did anything" to cause your condition. Welcome to this group - it is a very nice one, with lots of generous people who genuinely care. We're glad that you found us!!
COMMUNITY LEADER
MELD score indicates how ill you are compared to others on the transplant list. 13 is a very low number.
The Model for End-Stage Liver Disease (MELD) is a reliable measure of mortality risk in patients with end-stage liver disease. It is used as a disease severity index to help prioritize allocation of organs for transplant.
3 Month Mortality :
MELD score > 40 : 71.3% mortality
MELD score 30–39 : 52.6% mortality
MELD score 20–29 : 19.6% mortality
MELD score 10–19 : 6.0% mortality
MELD score < 9 : 1.9% mortality
-------------------------------------------------------------------------------------------
CPT is a measurement of how much your cirrhosis has progressed.
9 = Class C End-Stage Liver Disease
The Child’s-Turcotte-Pugh (CTP) score includes 5 variables, each scored 1-3. Patients are grouped into three classes based on the total CTP score, which is simply the sum of the scores for each of the 5 variables.
Patients scoring 5-6 points are considered to have ‘Class A’ failure; their 1 and 2 year median survivals are 95% and 90%, respectively.
A score of 7-9 is considered Class B with median survivals of 80% at 1 year and 70% at two years.
Class C patients (10-15) have far greater mortality: 1-year median survival is 45% and 2-year is 38%. Variations in the timing and subjectivity inherent in the scoring of the CTP (e.g. in grading ascites or encephalopathy) are its major limitations. In addition, the scale does not include renal function, an important prognostic factor in liver failure.
No one can say how long a patient can live with cirrhosis. Each person is unique and it depends on many factors.
"Transplant is out of the question due to other medical problems, heart and lungs."
This is unfortunate as there is no option for a liver transplant.
What is the cause of your cirrhosis? All that can be done is to stop the cause of your liver disease. Hopefully it is something terrible.
The best you can do is stay as healthy as possible for as long as possible. Your liver doctor should be helping you with this.
Focusing on the negative will do no good as apparently you have no option for transplant. It is important to live every day as much as possible. AS your doctor said no one can predict how long someone's liver will keep functioning, It could be many years or a few years.
Stem cell research will have no practical benefits for many years to come so I wouldn't put any hope in that.
You need to talk to your hepatologist and if you want the truth tell them you want the truth. Some patients don't want to know when their situation is dire. If you doctor isn't honest will you find another hepatologist you can consult with who you can discuss your fears and worries with. In my opinion it is good to plan for the worse while you are still healthy. I have made all of my arrangements with my sister in my will and I have paid for my cremation cause I want it done the way I want.
Let me know if I can help you with some other information.
Hector
On the transplant wait list for 3 years.
MELD score 34.
Unable to get a transplant because of my liver cancer creating a AFP level over 1000.
The Model for End-Stage Liver Disease (MELD) is a reliable measure of mortality risk in patients with end-stage liver disease. It is used as a disease severity index to help prioritize allocation of organs for transplant.
3 Month Mortality :
MELD score > 40 : 71.3% mortality
MELD score 30–39 : 52.6% mortality
MELD score 20–29 : 19.6% mortality
MELD score 10–19 : 6.0% mortality
MELD score < 9 : 1.9% mortality
-------------------------------------------------------------------------------------------
CPT is a measurement of how much your cirrhosis has progressed.
9 = Class C End-Stage Liver Disease
The Child’s-Turcotte-Pugh (CTP) score includes 5 variables, each scored 1-3. Patients are grouped into three classes based on the total CTP score, which is simply the sum of the scores for each of the 5 variables.
Patients scoring 5-6 points are considered to have ‘Class A’ failure; their 1 and 2 year median survivals are 95% and 90%, respectively.
A score of 7-9 is considered Class B with median survivals of 80% at 1 year and 70% at two years.
Class C patients (10-15) have far greater mortality: 1-year median survival is 45% and 2-year is 38%. Variations in the timing and subjectivity inherent in the scoring of the CTP (e.g. in grading ascites or encephalopathy) are its major limitations. In addition, the scale does not include renal function, an important prognostic factor in liver failure.
No one can say how long a patient can live with cirrhosis. Each person is unique and it depends on many factors.
"Transplant is out of the question due to other medical problems, heart and lungs."
This is unfortunate as there is no option for a liver transplant.
What is the cause of your cirrhosis? All that can be done is to stop the cause of your liver disease. Hopefully it is something terrible.
The best you can do is stay as healthy as possible for as long as possible. Your liver doctor should be helping you with this.
Focusing on the negative will do no good as apparently you have no option for transplant. It is important to live every day as much as possible. AS your doctor said no one can predict how long someone's liver will keep functioning, It could be many years or a few years.
Stem cell research will have no practical benefits for many years to come so I wouldn't put any hope in that.
You need to talk to your hepatologist and if you want the truth tell them you want the truth. Some patients don't want to know when their situation is dire. If you doctor isn't honest will you find another hepatologist you can consult with who you can discuss your fears and worries with. In my opinion it is good to plan for the worse while you are still healthy. I have made all of my arrangements with my sister in my will and I have paid for my cremation cause I want it done the way I want.
Let me know if I can help you with some other information.
Hector
On the transplant wait list for 3 years.
MELD score 34.
Unable to get a transplant because of my liver cancer creating a AFP level over 1000.
Thank You
I try to be positive. With me I want to know what it is that I had done to get this, seems like I am the first in my family and family history that has had it.
I have had it for over a year now, it was just last week when I was told what my MELD was and that a liver transplant is out of the question due to other medical problems.
My prayers are with you too.
I try to be positive. With me I want to know what it is that I had done to get this, seems like I am the first in my family and family history that has had it.
I have had it for over a year now, it was just last week when I was told what my MELD was and that a liver transplant is out of the question due to other medical problems.
My prayers are with you too.
I am just newly diagnosed also so I am still learning about these things. I know that the very nice and knowledgeable people on here will tell you that if you are not seeing a hepatologist you need to. They are the ones best able to care for you.
As far as " I have heard so many things about dying from this and it is not the way I think anyone should die like. " My advice is to not focus on dying, but on living. Don't waste your time, however long whether it be a day or 80 years, on negative thoughts. Positive thinking goes a long way. Also, one step and one day at a time. I know this can all be overwhelming, just breathe.
My thoughts and prayers are with you.
Shelley
As far as " I have heard so many things about dying from this and it is not the way I think anyone should die like. " My advice is to not focus on dying, but on living. Don't waste your time, however long whether it be a day or 80 years, on negative thoughts. Positive thinking goes a long way. Also, one step and one day at a time. I know this can all be overwhelming, just breathe.
My thoughts and prayers are with you.
Shelley
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