Aa
cirrhosis
I wish to ask anyone if they can give me a straight answer regarding my mortality rate with cirrhosis/fatty liver/afp 4. I am 40yrs old and am trying to get a straight,honest answer to the mortality question I have. As I live with my parents, mum is always with me at appointments so I won't ask that question. My best friend is the only person who knows and she is a Grade 7 nurse who thinks it is time to speak to my pensioner parents regarding a prognosis but I cannot get even a vague answer anywhere. Can anyone help at all as I am fighting this on my own.
Sorry to ramble on.
Sorry to ramble on.
You know you have nothing to lose by taking my advice Ginger. I hope you do! It seems that you are mostly dealing with all this on your own. This is way to much for anyone. I'm worried about you. I hope you have someone close that you can lean on through this. Are you doing okay over there?
Randy
Randy
Hi Ginger its good to hear back from you. I am wondering if her gave you 5 years due to the statistic that only 25% of people diagnosed with cirrhosis will make it longer than five years. This is only a statistic and many people these days are learning how to live muuch longer than that! You and I both can be them! I have had cirrhosis now for a year and a half and my health and blood tests are much better with every single test that is done. There are people that have lived twenty years with cirrhosis.
There is a big difference between people that are in the beginning of the final stage vs. at the end of the final stage. Choosing to continue to drink is suiside. Cirrhosis is not a death sentance as so many doctors will allow you to believe unless you do not find the strength to do what is necessary to recover. AS I mentioned above. It may sound like alot but its really not bad once you make it your new life style.
Im worried that you are giving up already and your not trying yet all because your basing it on what one doctor says. There are many things unknow about cirrhosis, when you read and learn more and more you see it said all the time that the cause for this and that is unknown. For example; It is unknown why when the ammonia toxin reaches the brain why it can be terminal for some patients and other patients remain uneffected? More research is needed. there are many other examples like this. So with knowing this how can any doctor with certainty pass that prognosis on to you? He is cruel for even saying that and I bet he says it to every patient with end stage cirrhosis. He doesnt base it on your personal health.
About your DNR request, It is all your decision. Just like the rest of it. I really mean it when I tell you your life is in your hands. With everything you do every day will play a role in weather you live or die. More directly effected than ever before. Ginger I hope you will find the strength you need. God bless you!
Randy
There is a big difference between people that are in the beginning of the final stage vs. at the end of the final stage. Choosing to continue to drink is suiside. Cirrhosis is not a death sentance as so many doctors will allow you to believe unless you do not find the strength to do what is necessary to recover. AS I mentioned above. It may sound like alot but its really not bad once you make it your new life style.
Im worried that you are giving up already and your not trying yet all because your basing it on what one doctor says. There are many things unknow about cirrhosis, when you read and learn more and more you see it said all the time that the cause for this and that is unknown. For example; It is unknown why when the ammonia toxin reaches the brain why it can be terminal for some patients and other patients remain uneffected? More research is needed. there are many other examples like this. So with knowing this how can any doctor with certainty pass that prognosis on to you? He is cruel for even saying that and I bet he says it to every patient with end stage cirrhosis. He doesnt base it on your personal health.
About your DNR request, It is all your decision. Just like the rest of it. I really mean it when I tell you your life is in your hands. With everything you do every day will play a role in weather you live or die. More directly effected than ever before. Ginger I hope you will find the strength you need. God bless you!
Randy
thank you for your response, after asking my GP for mortality rate, he said 2yrs if i still drink or 5 yrs approx if i don't drink. i am trying to deal with it,by choice, on my own so my family are spared any unnecessary pain . i have requested a DNR which i hope not to use. If anyone has any thoughts about this i would appreciate any feedback. Am so glad I found this, site
Ginger i'm sorry to hear about your cirrhosis. Regarding you immediate question nobody can answer that for you. Not even your doctor. There are just to many varibles involved. How well you do living with cirrhosis is entirely up to you.
There are two major causes of cirrhosis Alcoholism and Obesity. The most important thing that must be done is to stop what is causing the cirrhosis. If it's Alcohol then you must stop drinkng immediately! Never take another drink for the rest of your life. There can not be any exceptions. These next things I found to be more simple and they are diet, exercise and vitamins. I will elaborate more about these things once you tell me more about your diagnosis.
If your main cause is obesity then it can also be every bit as difficult to deal with alcoholism. Thing is You can't just stop eating. So as you can imagine diet and exercise will be crucial to your survival. Also again vitamins.
In cirrhotic patients the digestive process is sped up and therefore ample time is not available to get all the nutrients your body needs to maintain good healthy survival. From now on your life is in your hands with every decision your make. Cirrhosis can be a very agressive disease is you just decide to keep living your life they same way you have been for the last twenty years. You can make these changes and continue to live for the next twenty to thirty years.
I was diagnosed 03-23-11 end stage cirrhosis. I was 38 at the time. So it's been 16months. At first I was very angry mostly because I was looking for the same answer your are, How much more time do I have? I still don't know but I'm fine living the rest of my life and letting it be a surprise. The first thing I did was stop drinking immediately. 23 beers a day is alot of drinking but with-in 3 days I had stopped completely. I began reading about cirrhosis and I learned quickly there is alot to know about this disease. It's been 1 1/2 years since and I still read ever day. The more you know the more the better you can help yourself. This is also helpful so that you and your doctor can communicate better about about your treatment and what is better for you.
Finally I found that cirrhosis does not have to be a death sentance. It's all up to you all you have to do is educate yourself about the disease and find the strength you need to follow the rules. No alcohol, diet, exercise and vitamins.
The unforunate thing is that alot of people after diagnosis do nothing at all to make these changes that are so crusial and so the disease progresses futher into into the final stage. By the time they are finally ready to make these changes in many cases it's already too late. If your going to do something about it the time is now!
Ginger I would love to help you out and answer any questions you have so please feel welcome to come back and ask or if you are more comfortable you can send me a email/PM. I wish you the best Ginger and I hope to hear from you soon. God bless you.
Randy
There are two major causes of cirrhosis Alcoholism and Obesity. The most important thing that must be done is to stop what is causing the cirrhosis. If it's Alcohol then you must stop drinkng immediately! Never take another drink for the rest of your life. There can not be any exceptions. These next things I found to be more simple and they are diet, exercise and vitamins. I will elaborate more about these things once you tell me more about your diagnosis.
If your main cause is obesity then it can also be every bit as difficult to deal with alcoholism. Thing is You can't just stop eating. So as you can imagine diet and exercise will be crucial to your survival. Also again vitamins.
In cirrhotic patients the digestive process is sped up and therefore ample time is not available to get all the nutrients your body needs to maintain good healthy survival. From now on your life is in your hands with every decision your make. Cirrhosis can be a very agressive disease is you just decide to keep living your life they same way you have been for the last twenty years. You can make these changes and continue to live for the next twenty to thirty years.
I was diagnosed 03-23-11 end stage cirrhosis. I was 38 at the time. So it's been 16months. At first I was very angry mostly because I was looking for the same answer your are, How much more time do I have? I still don't know but I'm fine living the rest of my life and letting it be a surprise. The first thing I did was stop drinking immediately. 23 beers a day is alot of drinking but with-in 3 days I had stopped completely. I began reading about cirrhosis and I learned quickly there is alot to know about this disease. It's been 1 1/2 years since and I still read ever day. The more you know the more the better you can help yourself. This is also helpful so that you and your doctor can communicate better about about your treatment and what is better for you.
Finally I found that cirrhosis does not have to be a death sentance. It's all up to you all you have to do is educate yourself about the disease and find the strength you need to follow the rules. No alcohol, diet, exercise and vitamins.
The unforunate thing is that alot of people after diagnosis do nothing at all to make these changes that are so crusial and so the disease progresses futher into into the final stage. By the time they are finally ready to make these changes in many cases it's already too late. If your going to do something about it the time is now!
Ginger I would love to help you out and answer any questions you have so please feel welcome to come back and ask or if you are more comfortable you can send me a email/PM. I wish you the best Ginger and I hope to hear from you soon. God bless you.
Randy
Definitely need rpoo to check in here. If I remember correctly, he was told to pretty much get his affairs in order because his cirrhosis was so bad. He got sober and discovered that it's not necessarily an immediate death sentence. His story is tremendously inspiring.
Why are you afraid to ask your doctor about a prognosis in front of your mother? Maybe she would take any bad news better in front of the doctor. At least you'll both be able to have questions answered right there and then. I'm a big believer in asking blunt questions when it comes to doctors. I want a straight answer because it's too easy to speculate on worst-case scenarios and torture myself with anxiety when I don't have all the facts. Is there any way you can see your doctor privately so you can have a frank discussion? After all it's YOUR physical health, mental health and life at stake here. Nobody else, no matter how well-intentioned, should interfere with your treatment.
Hang in there and see what rpoo has to say. I think you'll feel better for talking with him. :-)
Why are you afraid to ask your doctor about a prognosis in front of your mother? Maybe she would take any bad news better in front of the doctor. At least you'll both be able to have questions answered right there and then. I'm a big believer in asking blunt questions when it comes to doctors. I want a straight answer because it's too easy to speculate on worst-case scenarios and torture myself with anxiety when I don't have all the facts. Is there any way you can see your doctor privately so you can have a frank discussion? After all it's YOUR physical health, mental health and life at stake here. Nobody else, no matter how well-intentioned, should interfere with your treatment.
Hang in there and see what rpoo has to say. I think you'll feel better for talking with him. :-)
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