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What can I expect?
Hi,
Just found this forum online and I really hope someone can answer my questions..
I was diagnosed end stage liver cirrhosis grade C almost a year ago. I had ascites and bilirubin 560+. Pretty much everything was really bad. I was told that I probably needed a transplant but that I needed to quit drinking at first as this was what caused it. They kept me in hospital for 2 weeks and told me that I was close to dying.
I haven't had any alcoholic drinks ever since and love life these days.. I'm just wondering what I can expect out of life since the doctors won't give me any answers. I live in a small country where treatment and policy probably differs from US or UK.
I feel and look healthy apart from severe pain from the liver area from time to time and I tend to bleed easily. I'm on a lot of medications and they take blood tests every second month. They tell me that this is a very serious condition and that I was very unlucky since I "only" abused alcohol for 5 years, apart from that I don't get any real answers. I know it's probably hard to tell but what would be reasonable to assume? Is the only way a transplant in the long run or can I go on living like this? As it is now I can only rely on what different medical sources online says. I'm only 28 and need to know.. can I be healthy for another year, 3, 5 years? Will I ever live to be old? As I understand it a new liver has it's expiration date as well if I ever were to get one.. Hope someone have some answers. Thanks.
Just found this forum online and I really hope someone can answer my questions..
I was diagnosed end stage liver cirrhosis grade C almost a year ago. I had ascites and bilirubin 560+. Pretty much everything was really bad. I was told that I probably needed a transplant but that I needed to quit drinking at first as this was what caused it. They kept me in hospital for 2 weeks and told me that I was close to dying.
I haven't had any alcoholic drinks ever since and love life these days.. I'm just wondering what I can expect out of life since the doctors won't give me any answers. I live in a small country where treatment and policy probably differs from US or UK.
I feel and look healthy apart from severe pain from the liver area from time to time and I tend to bleed easily. I'm on a lot of medications and they take blood tests every second month. They tell me that this is a very serious condition and that I was very unlucky since I "only" abused alcohol for 5 years, apart from that I don't get any real answers. I know it's probably hard to tell but what would be reasonable to assume? Is the only way a transplant in the long run or can I go on living like this? As it is now I can only rely on what different medical sources online says. I'm only 28 and need to know.. can I be healthy for another year, 3, 5 years? Will I ever live to be old? As I understand it a new liver has it's expiration date as well if I ever were to get one.. Hope someone have some answers. Thanks.
The 1st thing you need to do is have your doctor declare that you are unable to work anymore. Then head to your nearest Social Security office or DHS and apply. Someone at your Dr.s office should be able to help you with that information. It takes awhile, but it can be done.I know this because I have this disease, too. And I got Medicaid and SSI. Please check in to this. It will pay for all of your prescribed med's and dr. and hospital bills. Please look into this!
The 1st thing you need to do is have your doctor declare that you are unable to work anymore. Then head to your nearest Social Security office or DHS and apply. Someone at your Dr.s office should be able to help you with that information. It takes awhile, but it can be done.I know this because I have this disease, too. And I got Medicaid and SSI. Please check in to this. It will pay for all of your prescribed med's and dr. and hospital bills. Please look into this!
Hmmm, I detect a tad amount of manic depression. Strange way to speak. And not an ounce of legitimate information.
A person cannot live without a liver, period. Please do not tell someone that they can. It is the same as telling someone they can live without a heart.
I have hep c and stage 4 cirrohis. I just saw my transplant doctor last eeek. Ive been told not to take anything, even herbs exceot milk thistle. I stilk work but cant remember things and am doing it from home because of the fatigue. It hits me hard where I cant hold my eyes open how hard I try. Anybody know anything to help that? Im also breaking out on my knuckles and upoer arms but the same places on both sides of my body. Doc said it looks like smthg wrong inside, I found warm lemon water every morning dried it up where nothing else would. Its there but not bubbly and itchy. Not sure what it is, feet are always hurting, anything? Feels like my toes need stretched but are already ripoing. I keep lotion on them. Been put on paxil 20 mg and a water pill as I am 130 lbs to 183 in 4 months. Im huge and really depressed over it.I rarely eat but when I do its shredded wheat. Is that bad? I don't cok or even feel like standing that long. Can I apply for disability if I am heading for being unemployef soon? But, my insurance is thru work, im in a no win situation. Has anybody had united healthcare insurance? Did it cover the expensive meds and transplant? So scared it wont and I just have to prepare myself.
I have hep c and stage 4 cirrohis. I just saw my transplant doctor last eeek. Ive been told not to take anything, even herbs exceot milk thistle. I stilk work but cant remember things and am doing it from home because of the fatigue. It hits me hard where I cant hold my eyes open how hard I try. Anybody know anything to help that? Im also breaking out on my knuckles and upoer arms but the same places on both sides of my body. Doc said it looks like smthg wrong inside, I found warm lemon water every morning dried it up where nothing else would. Its there but not bubbly and itchy. Not sure what it is, feet are always hurting, anything? Feels like my toes need stretched but are already ripoing. I keep lotion on them. Been put on paxil 20 mg and a water pill as I am 130 lbs to 183 in 4 months. Im huge and really depressed over it.I rarely eat but when I do its shredded wheat. Is that bad? I don't cok or even feel like standing that long. Can I apply for disability if I am heading for being unemployef soon? But, my insurance is thru work, im in a no win situation. Has anybody had united healthcare insurance? Did it cover the expensive meds and transplant? So scared it wont and I just have to prepare myself.
Great post, Joe - with some spot-on analogies! You've provided us all with further evidence that this often-baffling disease seems to behave differently in each individual. Glad to hear from someone who is doing so well! I also sent you a private message -
Thanks!
PD
Thanks!
PD
I stopped drinking nearly 24 years ago, I was diagnosed about 9 months later with cirrhosis after a severe bleed. I am still here today. They talked of transplant back then but other then itching some bloating darker urine here I am. Nobody ever talked about Childs of any of that stuff with me. Some Dr. said I could live to 70. I'm 48 now. Do I know the answers no. Do I know why I'm still alive? NO. Are their scales accurate? I assume so. But yet here I am. Am I lucky? Maybe. Am I a fluke? Maybe so. All I know is why am I here? Why would doctors fill my head if I'm a goner in 5 years, 10 best? Don't know. Maybe its like global warming. Some don't prescribe to the scales and charts. Take milk thistle? Don't know I do. Eat right I try to but no doctor ever said don't eat this or that. Just how does cirrhosis work? Does it effect all the liver? Does some parts not get effected? Do the healthy sections regenerate? If so does that create more time? All I know is they hit me with that long *** needle twice and like Yukon Cornelius- Nothing!!!. That tells me the section they hit apparently wasn't effected. Well if I've never drank again then how does it morph into the bad scarred liver? See where I'm coming from there are a lot of unanswered questions here. What part did Tylenol play, is all the liver effected, can unaffected parts repair and keep function adequate? People that's why your doctor is the answer. Ask around. Treat your problem and above all don't drink ever again. Just how were supposed to get rid of a headache is beyond me. I just think this thing is loaded with variables as I described and what your googling is the text book answers to charts. Its kinda like global warming as I said it all sounds great until you get 100 inches of snow and temperatures under 25 all winter then they call it climate change lol. What this means is they find out different things, they put in shunts, give you milk thistle, keep you off things like Tylenol which they didn't know a damn thing about when I was diagnosed. How many people died because they didn't know that?
I was diagnosed 2 or more years ago, stage 4 scarring. It was from HCV for 45 years. What they could not tell me is how long I was stage 4. Point being it could have been 10 years I was stage 4. I started taking the best herbs I could find and other natural substances for the liver and I don't know if it is significant but my viral load went down 70%. I think mostly from Pao de arco, a tree found in central and south amercia. I regularly see a shaman healer, no ********, and they have helped me considerable. I surf, play hockey, I'm 62, I have 1 and 6 types, how? Don't know. I moved to panama bought a catamaran and I sweat a lot. What I have found is sweating takes a huge load off the liver. There is one confirmed medical report of a guy who was able to live without a liver, but he had to sweat a lot. You can probably find it on line. I find you need large amounts of water, there are many antiviral herbs, and powerful ones growing here in panama on my street and in vacant lots. I do want to kill the virus ASAP with the new protease killer drugs to give my liver a rest, there are some good ones, new ones to come yet. I do have some weak days and do feel my liver sometimes and I may die in 2 months of liver cancer. Don't trust your doctor when he prescribes pain meds, they will, even if you tell him to not give you anything to hurt your liver, kill you, look them up before you take them, no Tylenol! It is harder on your loved ones than you, you can kill them with their worry. That is not your responsibility, so if you want to continue your suicide just admit it to them and get your stuff in order to die, you can die responsibly, even if you can't live responsibly. I did some ahuaysca this weekend and the first powerful message was prepare to die. That means clean up your mess, write a new song, tell someone you love them, forgive them, look at a sunset, you really think that death is bad, it is freedom. You should be ready to die at any moment if you are an adult. How long can you live with stage 4, longer now than ever. Unless you are doing or have tried all the things I mention here, don't even post a negative doubting comment.
My doctor tell me I have stage 4 cirrhosis is that the last stage before end stage and if so how long will it be before I reach end stage.I have hep c
i have a end stage liver disease but i dont have money to buy the medications, now im still working even its very hard for me i live in a country that liver transplantation is very expensive.now im waiting for my time looking to the stars maybe some of them will help me but i know its not gonna happen..maybe even miracles cant save me now..im thinking to make the suffering much less i dont really know what to do..well im young and life is good for me this past years and thats all i can remember thank you for the experience all i can say.
My dad had a triple bypass last year, and now he has scarring to his liver and a lump in one of his kidneys. I thought everything was ok after the operation but all this started happening. I really dont know what to do but pray its not serious. He is going to do a biospy soon to check whether its Cirrhosis or liver cancer. But lucky we saw it sooner and his age is 74 years but still strong.
I'm not paulwall, obviously but before my transplant I saw an herbalist who was also an MD.
She suggested a long list of supplements to help with the symptoms but never claimed they would reverse liver damage.
Among them were ALA ( alpha lipoic acid) and milk thistle.
I also took turmeric, omega 3 fish oil and ashwaganda.
Did they help ? Who knows ?
I do know my liver continued to deteriorate. I didn't have many of the problems that other people do prior to my liver transplant but there is no way I can say for certain it was because of any of the supplements I took.
She suggested a long list of supplements to help with the symptoms but never claimed they would reverse liver damage.
Among them were ALA ( alpha lipoic acid) and milk thistle.
I also took turmeric, omega 3 fish oil and ashwaganda.
Did they help ? Who knows ?
I do know my liver continued to deteriorate. I didn't have many of the problems that other people do prior to my liver transplant but there is no way I can say for certain it was because of any of the supplements I took.
Hi I see that you are have researched natural remedies but do you actually know anyone who has tried these?
Thank you so much for helpful information. I've read my journals to get some better understanding of my condition and have an appointment in a few weeks.. I'm not in denial, it's just hard to realize how bad it really is.
My files said that I'm too healthy at the moment to consider transplant but my doctor has been in contact with the transplant team before my tests improved. I don't really understand the child scale, is it recalculated? I was a C at the time of diagnosis and would now be a B, does that say anything about condition and prognosis or just mean that it's temporarely better?
Thanks, J
My files said that I'm too healthy at the moment to consider transplant but my doctor has been in contact with the transplant team before my tests improved. I don't really understand the child scale, is it recalculated? I was a C at the time of diagnosis and would now be a B, does that say anything about condition and prognosis or just mean that it's temporarely better?
Thanks, J
Dear Jessica, I have no answers, Hectors has given you the best answer.
I was in denial as to my condition, Hector helped me to understand
I wanted to say how sorry I am that at such a young age you are suffering with this
God bless you
Dee
I was in denial as to my condition, Hector helped me to understand
I wanted to say how sorry I am that at such a young age you are suffering with this
God bless you
Dee
Jessica a combination of r-alpha lipoic acid, milk thistle extract and n-acetyl cysteine has been shown to reverse very severe liver disease, even among people that doctors have said need liver transplants. The substances are very cheap, and you can get them from your local health store. There is no risk in taking them, as they are natural substances that are very healthy for you. In a study I read somewhere a long time ago, as high as 90% of people who needed liver transplants were able to restore liver function. Its worth giving it a shot.
Hector has given you excellent information.
I had no idea I had ESLD until my belly got swollen from ascites.
I never had liver pain.
There is no time limit on your new liver after transplantation.
I believe the oldest one to date has lasted over 40 years.
Good luck going forward.
I had no idea I had ESLD until my belly got swollen from ascites.
I never had liver pain.
There is no time limit on your new liver after transplantation.
I believe the oldest one to date has lasted over 40 years.
Good luck going forward.
COMMUNITY LEADER
If you have End-Stage Liver Disease and you mean Child-Pugh class C cirrhosis the damage to your liver is irreversible. In time you will need a liver transplant to continue to live.
I do not know the medical system of Denmark but I would assume it is similar to other European countries.
You must abstain from alcohol for a period of time. Usually 6 or 12 months before you can be considered to be listed for a transplant. Since livers are in such short supply transplant centers will not give a liver to someone who abuses their liver with alcohol or drugs. Because the patient will end up dying if they continue their lifestyle after a transplant.
Are you going to a liver transplant center for your treatment? You must if you want to continue to live. If your doctors won't give you the answers you need ask for a second opinion or change doctors. You should have the right to know how ill you are so you can make appropriate choices and plans.
"I feel and look healthy apart from severe pain from the liver area from time to time and I tend to bleed easily. I'm on a lot of medications and they take blood tests every second month."
* Don't be fooled into being in denial of your liver disease. End-Stage Liver Disease is a terminal illness. That is why it is call "End-Stage". There are many complications that can occur in persons with advanced cirrhosis that can be fatal. Ascites can get infected. You could vomit blood and lose most of your blood. If you have hepatic encephalopathy you could go into a coma. Any type of infection can also be fatal. This is why you must be monitored closely by a doctor that treats patients with cirrhosis on a daily basis.
"I know it's probably hard to tell but what would be reasonable to assume? Is the only way a transplant in the long run or can I go on living like this? "
* As I said. End-Stage Liver Disease means just that, End-Stage. The last phase in the course of a progressive disease. How long you have to live. No one can predict that.
"As it is now I can only rely on what different medical sources online says. I'm only 28 and need to know.. can I be healthy for another year, 3, 5 years? Will I ever live to be old?"
* No one can predict what and when it will happen. Each person is unique and responds to disease differently.
"As I understand it a new liver has it's expiration date as well if I ever were to get one."
* That is not true and is irrelevant. When you liver fails if you don't have a transplant your life will be over. If you get a transplant then every day you are alive after that is a day you were never suppose to have. I know people who have lived for 10 years and even 20 years after their transplants and these are people that were much older than you are. So the choice is simple when your liver fails progressively either you get a transplant or death is certain. No one can live without a functioning liver.
So you need to be under the care of a transplant center from now on. So you can be listed for a liver transplant and monitored for signs of liver failure. I hope you are being monitored every 6 months for liver cancer as persons with liver disease caused by alcohol abuse have an increased risk for developing liver cancer.
Good luck to you!
Hector
I do not know the medical system of Denmark but I would assume it is similar to other European countries.
You must abstain from alcohol for a period of time. Usually 6 or 12 months before you can be considered to be listed for a transplant. Since livers are in such short supply transplant centers will not give a liver to someone who abuses their liver with alcohol or drugs. Because the patient will end up dying if they continue their lifestyle after a transplant.
Are you going to a liver transplant center for your treatment? You must if you want to continue to live. If your doctors won't give you the answers you need ask for a second opinion or change doctors. You should have the right to know how ill you are so you can make appropriate choices and plans.
"I feel and look healthy apart from severe pain from the liver area from time to time and I tend to bleed easily. I'm on a lot of medications and they take blood tests every second month."
* Don't be fooled into being in denial of your liver disease. End-Stage Liver Disease is a terminal illness. That is why it is call "End-Stage". There are many complications that can occur in persons with advanced cirrhosis that can be fatal. Ascites can get infected. You could vomit blood and lose most of your blood. If you have hepatic encephalopathy you could go into a coma. Any type of infection can also be fatal. This is why you must be monitored closely by a doctor that treats patients with cirrhosis on a daily basis.
"I know it's probably hard to tell but what would be reasonable to assume? Is the only way a transplant in the long run or can I go on living like this? "
* As I said. End-Stage Liver Disease means just that, End-Stage. The last phase in the course of a progressive disease. How long you have to live. No one can predict that.
"As it is now I can only rely on what different medical sources online says. I'm only 28 and need to know.. can I be healthy for another year, 3, 5 years? Will I ever live to be old?"
* No one can predict what and when it will happen. Each person is unique and responds to disease differently.
"As I understand it a new liver has it's expiration date as well if I ever were to get one."
* That is not true and is irrelevant. When you liver fails if you don't have a transplant your life will be over. If you get a transplant then every day you are alive after that is a day you were never suppose to have. I know people who have lived for 10 years and even 20 years after their transplants and these are people that were much older than you are. So the choice is simple when your liver fails progressively either you get a transplant or death is certain. No one can live without a functioning liver.
So you need to be under the care of a transplant center from now on. So you can be listed for a liver transplant and monitored for signs of liver failure. I hope you are being monitored every 6 months for liver cancer as persons with liver disease caused by alcohol abuse have an increased risk for developing liver cancer.
Good luck to you!
Hector
Hi Jessica!
Welcome to the Forum! I am sort of new here too.If you could let Us know a little more about your Condition it will help the others on here that can Help you more than I can.I have had Hep C 27 yrs.. which is what caused my Cirrhosis. There are alot of Knowledgeable people on this Forum that will be along soon..The more info you can give the more they can help answer your Q's..We are not Doctors here,just people that are going through the same as you.
- Are you seeing a Hepatologist @ a Transplant Center?
- What are your Lab results?
Best Wishes!
~Country~
Welcome to the Forum! I am sort of new here too.If you could let Us know a little more about your Condition it will help the others on here that can Help you more than I can.I have had Hep C 27 yrs.. which is what caused my Cirrhosis. There are alot of Knowledgeable people on this Forum that will be along soon..The more info you can give the more they can help answer your Q's..We are not Doctors here,just people that are going through the same as you.
- Are you seeing a Hepatologist @ a Transplant Center?
- What are your Lab results?
Best Wishes!
~Country~
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A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
The score employs five clinical measures of liver disease. Each measure is scored 1-3, with 3 indicating most severe derangement.
Total bilirubin
Serum albumin
PT INR
Ascites
Hepatic encephalopathy
To calculate your CPT score...
http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/
"I was a C at the time of diagnosis and would now be a B, does that say anything about condition and prognosis or just mean that it's temporarely better? "
Points Class One year survival Two year survival
5-6 A 100% 85%
7-9 B 81% 57%
10-15 C 45% 35%
NOTE: Everyone is different so these numbers can't predict your progression.
The Model for End-Stage Liver Disease (MELD) is used increasingly to assess patients for liver transplantation, although both scores seem to be more or less equivalent.
The MELD score is perhaps a more accurate assessment of peri- operative mortality in patients with hepatic dysfunction. The score is derived from a linear regression model based on serum bilirubin, creatinine levels, and the international normalized ratio (INR). It is more accurate than the Child classification in that it is objective, gives weights to each variable, and does not rely on arbitrary cut-off values.
So your MELD score will tell you how close to transplant you are. Depending on knowing the MELD score that the center normally transplants at.
Remember that your condition can change at any time either suddenly or progressively. As patients get more ill they can suffer liver failure at any time. That is why the MELD score is calculated on a periodic bases. TO monitor a patients with End-Stage Liver Disease health status.
Best of luck to you.
Hector