Aa
question to all with comp/decomp.cirrhosis
hi there,
i would to ask all with advanced liver disease how does your life looks like.
do you still work?
do you have nausea all day long?
do you have severe pain in the back, the muscles and stomach?
do you have muscle twitches everywhere?
do you feel like your just a shadow of you once was?
do you have wishes of death to release from the 24/7 suffering?
how do you handle this all and not going nuts?
apreciate some answers from others
marc
i would to ask all with advanced liver disease how does your life looks like.
do you still work?
do you have nausea all day long?
do you have severe pain in the back, the muscles and stomach?
do you have muscle twitches everywhere?
do you feel like your just a shadow of you once was?
do you have wishes of death to release from the 24/7 suffering?
how do you handle this all and not going nuts?
apreciate some answers from others
marc
thanks so much for all the insight of your situation.i guess its like in other deseases,every people reacts diffrent,has diffrent symptoms,wich not always correlate to blood labs,or any score(meld,or child)
i have to talk to my hepatologist and ask for help to chlarify what symptoms are from the liver and what symptomes coming from my depression/anxiety.
marc
i have to talk to my hepatologist and ask for help to chlarify what symptoms are from the liver and what symptomes coming from my depression/anxiety.
marc
Sunru and Heart, thanks so much for sharing your experiences, both of you. Wow, Sunru, you have so many physiological symptoms for early compensated Cirrhosis. I pray every day for a new treatment to be available for non responders and partial responders. I hope it will come soon. Heart, as always, I am amazed at how well you are doing given your stage of liver disease.
Marc, have faith. Never give up hope. You have achieved SVR and your liver is healing itself. Now you have to work to recover your joy for life.
Best wishes to all.
Advocate1955
Marc, have faith. Never give up hope. You have achieved SVR and your liver is healing itself. Now you have to work to recover your joy for life.
Best wishes to all.
Advocate1955
"i would to ask all with advanced liver disease how does your life looks like." = Not like I expected it to be. I am a doer, not a sitter, usually go-go all the time...do not like waiting. On TP list, Stage 4 ESLD decomp 0% viable liver, moderate level. Still have HCV 1 Million+viral load. Starting on new two drug trial prior to TP to irradiated the HCV. To some my life would look bleak...to me, the family and friends who know me, this looks like a challenge that just won't stop.
"do you still work?" = Would love to...thought I'd be working until the day I died...but because of testing, and trials and adverse reaction have not been able to since my division was outsized to national company. Have to go into new employer looking for a job honestly. I can't lie well. And reallyif you were the employer and I said to you, "oh by the way, next week or two months from now I will be off work for 6 - 9 months because I am having a liver transplant." would you hire me. Probably not.
"do you have nausea all day long?" = No. If I ever am nauseous I will drink a coke and it settles my stomach.
"do you have severe pain in the back, the muscles and stomach?" = Yes at times...back pain from fatty liver when my liver was alive...plus back pain from old motorcycle injury and wearing 6 in high heels for over 30 years....that's why my knees and feet are in pain a lot. Do have shoulder pain ...could be from playing baseball for dozens of years, being a EMT and lifting people on to gurneys or could be from medications.....had bad, really bad stomach pain...blamed it on the liver only to find out I had really, really bad ulcers. / Old age or liver...... Illness or life style and past experiences.....hmmmm......that is always the question. Can't blame everything on the liver.
"do you have muscle twitches everywhere?" = NO. But do have charlie horses in my legs...usually when I let my potassium get low and haven't drunk enough water to stay hydrated.
"do you feel like your just a shadow of you once was?" = Again...old age or the liver. Really, at 66 could I play softball, dance on a bar top, bartend to dawn, salsa dance until I dropped, cook and feed people like a maniac, sail my boat by myself, or go hiking and traveling throughout most of whole like I did in my 30 & 40's? Work 100 hour weeks and still be on the go. Yes, I am a shadow of that person but I had a realistic expectation that I would be. Do I like it...no.....getting old is sad.....BUT it is an adventure all by itself. If you were active before you got ill or aged then you have a better chance of being that way again.
"do you have wishes of death to release from the 24/7 suffering?" = NO. I will not take my own life...I will live it to the fullest. If one night I go to sleep and do not wake, so be it. At least I know I have given it my all. When I worked in the ER I witnessed many suicide victims but it was the families who were in the most pain. I will not do that to my kids or my grandkids. I want them to think of me with a smile and a laugh...I am known as the "fun" grandma....the "fun" mom.....because I make them know every day what blessing they are to me and the world.
"how do you handle this all and not going nuts?" = You stay as active as you can. You search for ways to help others in the same situation. You think beyond yourself. You educate yourself as much as you can. You stay busy. Get out. If you can't do that get on websites and start making friends. If you can, walk. I am fortunate to have a little dog who drives me crazy at times but is my best little friend...get's me out and going.
I have always said that if my time comes, it comes. I have lived an adventurous life full of drama, trauma, ups and downs, laughter and sadness but in the end....I lived. The second we are born we are assured we will die. This is the one fact that we know for our whole life. When, who knows. From this disease? Or something random. Who knows. That's why you tell everyone you love you love them....and you find a peace within yourself.
An old boss once told me that a person is either a can do or a can't do person. He asked me which I was. I said, can do. He said, then do it. Live life, believe in the impossible, believe in yourself, have faith and find a way to come to grips and peace with what is going on in your life. I have friends who wha-wha about the silliest things and I tell them to go sit in the lobby of the nearest children's hospital for a day.....odd how it puts things in perspective.
I am not saying it is easy....and each of us is different. All I know is I have a 89 year old mother who is healthy as a horse and sits non stop in her recliner by the window stating she wants to die...that is how she want to finish out her life. THAT WILL NOT BE ME. NO WAY. Who was it that sang "pain is but pleasure".....Freddie Mercury I think....I don't agree with that 100% but defeating the pain is a pleasure....and that I intend to do.
"do you still work?" = Would love to...thought I'd be working until the day I died...but because of testing, and trials and adverse reaction have not been able to since my division was outsized to national company. Have to go into new employer looking for a job honestly. I can't lie well. And reallyif you were the employer and I said to you, "oh by the way, next week or two months from now I will be off work for 6 - 9 months because I am having a liver transplant." would you hire me. Probably not.
"do you have nausea all day long?" = No. If I ever am nauseous I will drink a coke and it settles my stomach.
"do you have severe pain in the back, the muscles and stomach?" = Yes at times...back pain from fatty liver when my liver was alive...plus back pain from old motorcycle injury and wearing 6 in high heels for over 30 years....that's why my knees and feet are in pain a lot. Do have shoulder pain ...could be from playing baseball for dozens of years, being a EMT and lifting people on to gurneys or could be from medications.....had bad, really bad stomach pain...blamed it on the liver only to find out I had really, really bad ulcers. / Old age or liver...... Illness or life style and past experiences.....hmmmm......that is always the question. Can't blame everything on the liver.
"do you have muscle twitches everywhere?" = NO. But do have charlie horses in my legs...usually when I let my potassium get low and haven't drunk enough water to stay hydrated.
"do you feel like your just a shadow of you once was?" = Again...old age or the liver. Really, at 66 could I play softball, dance on a bar top, bartend to dawn, salsa dance until I dropped, cook and feed people like a maniac, sail my boat by myself, or go hiking and traveling throughout most of whole like I did in my 30 & 40's? Work 100 hour weeks and still be on the go. Yes, I am a shadow of that person but I had a realistic expectation that I would be. Do I like it...no.....getting old is sad.....BUT it is an adventure all by itself. If you were active before you got ill or aged then you have a better chance of being that way again.
"do you have wishes of death to release from the 24/7 suffering?" = NO. I will not take my own life...I will live it to the fullest. If one night I go to sleep and do not wake, so be it. At least I know I have given it my all. When I worked in the ER I witnessed many suicide victims but it was the families who were in the most pain. I will not do that to my kids or my grandkids. I want them to think of me with a smile and a laugh...I am known as the "fun" grandma....the "fun" mom.....because I make them know every day what blessing they are to me and the world.
"how do you handle this all and not going nuts?" = You stay as active as you can. You search for ways to help others in the same situation. You think beyond yourself. You educate yourself as much as you can. You stay busy. Get out. If you can't do that get on websites and start making friends. If you can, walk. I am fortunate to have a little dog who drives me crazy at times but is my best little friend...get's me out and going.
I have always said that if my time comes, it comes. I have lived an adventurous life full of drama, trauma, ups and downs, laughter and sadness but in the end....I lived. The second we are born we are assured we will die. This is the one fact that we know for our whole life. When, who knows. From this disease? Or something random. Who knows. That's why you tell everyone you love you love them....and you find a peace within yourself.
An old boss once told me that a person is either a can do or a can't do person. He asked me which I was. I said, can do. He said, then do it. Live life, believe in the impossible, believe in yourself, have faith and find a way to come to grips and peace with what is going on in your life. I have friends who wha-wha about the silliest things and I tell them to go sit in the lobby of the nearest children's hospital for a day.....odd how it puts things in perspective.
I am not saying it is easy....and each of us is different. All I know is I have a 89 year old mother who is healthy as a horse and sits non stop in her recliner by the window stating she wants to die...that is how she want to finish out her life. THAT WILL NOT BE ME. NO WAY. Who was it that sang "pain is but pleasure".....Freddie Mercury I think....I don't agree with that 100% but defeating the pain is a pleasure....and that I intend to do.
Hello, I have early compensated cirrhosis. My GI doctor at Kaiser kept emailing and calling me to try to encourage me to get treated. Since I'm a gt1a and non responder to interferon/rbv I wasn't interested in going thru that again so kept my labs checked over the years. Doctor called me again and said he wanted to see me in the office. So I went, he said he thought I had early cirrhosis without me having a biopsy he could tell by the blood tests. I asked if he would order a fibrosure test ...he did and results came back stage 2-3 fibrosis. He called me in to his office againg and said the fibrosure or fibroscan can't remember ...he said, I think the results are an "underestimate"
of what is really going on. He did not ask me to do a biopsy but I volunteered to have it done to get a comparison or confirm. Results were as he predicted, early cirrhosis stage 4. I have moderate ascites and swelling, bile acids worsening (have to take cholestramyne to stop the severe itching from bile acids) and much more.
i would to ask all with advanced liver disease how does your life looks like.
do you still work? No, had to quit work due to constant respiratory infections and to go on tx.
do you have nausea all day long? No but probably would if I hadn't started eating healthier foods. If I ate too much sugar or let my blood sugar get low - it would cause constant nausea. Now I have to eat several meals a day to keep blood sugar balanced.
do you have severe pain in the back, the muscles and stomach? Yes, I have had moderate to severe back pain since 8 months ago for unknown reason.
do you have muscle twitches everywhere? yes, muscle twitches and cramps in hands and legs including terrifying nocturnal leg and foot cramps until discovering that infared heat stops cramps within 2 minutes.
do you feel like your just a shadow of you once was? At times I feel down about the unknown but I just don't allow mild depression to get worse so I take SamE and exercise more.
do you have wishes of death to release from the 24/7 suffering? Not at all. this depends on ones perspective **the meaning of life. I have found that hcv alone can cause depression, as it has for me over the past 20 years. I'd say I'm more pro-active now about achieving SVR than I used to be. Anything, to stop the cirrhosis from advancing is the best I can do at this pont. You are lucky to have achieved SVR. You don't wan't to have your liver get worse, it is a lot more pain and discomfort. It's hard to imagine, it hits you like a ton of bricks and it can happen really fast.
how do you handle this all and not going nuts? I have found that hcv makes me feel like a hypochondriac. As I look back, on all the worries I used to have on this symptom and that flare up and this test what is going on? I just look back and laugh because it has had that effect on me for such a long time. Now with cirrhosis, everything is just intensified and it really keeps you busy trying to stay alive.
of what is really going on. He did not ask me to do a biopsy but I volunteered to have it done to get a comparison or confirm. Results were as he predicted, early cirrhosis stage 4. I have moderate ascites and swelling, bile acids worsening (have to take cholestramyne to stop the severe itching from bile acids) and much more.
i would to ask all with advanced liver disease how does your life looks like.
do you still work? No, had to quit work due to constant respiratory infections and to go on tx.
do you have nausea all day long? No but probably would if I hadn't started eating healthier foods. If I ate too much sugar or let my blood sugar get low - it would cause constant nausea. Now I have to eat several meals a day to keep blood sugar balanced.
do you have severe pain in the back, the muscles and stomach? Yes, I have had moderate to severe back pain since 8 months ago for unknown reason.
do you have muscle twitches everywhere? yes, muscle twitches and cramps in hands and legs including terrifying nocturnal leg and foot cramps until discovering that infared heat stops cramps within 2 minutes.
do you feel like your just a shadow of you once was? At times I feel down about the unknown but I just don't allow mild depression to get worse so I take SamE and exercise more.
do you have wishes of death to release from the 24/7 suffering? Not at all. this depends on ones perspective **the meaning of life. I have found that hcv alone can cause depression, as it has for me over the past 20 years. I'd say I'm more pro-active now about achieving SVR than I used to be. Anything, to stop the cirrhosis from advancing is the best I can do at this pont. You are lucky to have achieved SVR. You don't wan't to have your liver get worse, it is a lot more pain and discomfort. It's hard to imagine, it hits you like a ton of bricks and it can happen really fast.
how do you handle this all and not going nuts? I have found that hcv makes me feel like a hypochondriac. As I look back, on all the worries I used to have on this symptom and that flare up and this test what is going on? I just look back and laugh because it has had that effect on me for such a long time. Now with cirrhosis, everything is just intensified and it really keeps you busy trying to stay alive.
thanks so for your replies.
the problem is that I have cured my hepc,have no ascites or varies enlarged spleen.in ultrasound everything looks normal and latest fibroscan said F3 alltough its not a biopsy.
blood labs all in norm again.I had a episode where my bilirubin was increased,but in the last checks its normal again.
I've gone to two transplant centers for getting opinions,but both said your liver will improving of at least stay stable.
I still work also but sometimes its hard when having pain and nausea all day along with a nasty body feeling it feels like Ian constant sick but don't know why although I still believe its my liver.
On the other side I can't imagine the 2 hepatologists are both wrong and incompetence as they are both heads of hepatologists in theirs transplant centers.
I just no more know what to do.
the problem is that I have cured my hepc,have no ascites or varies enlarged spleen.in ultrasound everything looks normal and latest fibroscan said F3 alltough its not a biopsy.
blood labs all in norm again.I had a episode where my bilirubin was increased,but in the last checks its normal again.
I've gone to two transplant centers for getting opinions,but both said your liver will improving of at least stay stable.
I still work also but sometimes its hard when having pain and nausea all day along with a nasty body feeling it feels like Ian constant sick but don't know why although I still believe its my liver.
On the other side I can't imagine the 2 hepatologists are both wrong and incompetence as they are both heads of hepatologists in theirs transplant centers.
I just no more know what to do.
I was diagnosed with compensated cirrhosis in 2008. I have Hep C genotype 1a and been treated several times with null response. Currently I have some symptoms had to have varicies banded and take Spironoactlone for edema and a small amount of ascities. Kinda on the border between compensated/decompensated
.
Your questions:.
do you still work?
Yes. Full time and teach a class on night a week. Also I attend a meeting for an organization I belong to 1 night a week
do you have nausea all day long?
No I do not
do you have severe pain in the back, the muscles and stomach?
No
do you have muscle twitches everywhere?
I have some muscle twitching that turn into cramps probably due to the Spironoactlone.
do you feel like your just a shadow of you once was?
Well I am older than I was and I am tired more than I would like
do you have wishes of death to release from the 24/7 suffering?
Absolutely no. All we have is this life and who know what comes after I have only one choice but to live life as long and with as much strength as I can
how do you handle this all and not going nuts?
I keep on trying to fight the good fight and be of service to others through volunteerism. Also hoping the new treatments coming soon may end my infection of hep C and prolong my life there is hope for a cure.
If you are having all these kind of issues have you spoken with your health care provider? They should be able to help you with these problems. I might also suggest if you can find a support group in your community to talk with other people who share our situation and can provide emotional support.
All my best wishes to you hang in there buddy tomorrow is another day
.
Your questions:.
do you still work?
Yes. Full time and teach a class on night a week. Also I attend a meeting for an organization I belong to 1 night a week
do you have nausea all day long?
No I do not
do you have severe pain in the back, the muscles and stomach?
No
do you have muscle twitches everywhere?
I have some muscle twitching that turn into cramps probably due to the Spironoactlone.
do you feel like your just a shadow of you once was?
Well I am older than I was and I am tired more than I would like
do you have wishes of death to release from the 24/7 suffering?
Absolutely no. All we have is this life and who know what comes after I have only one choice but to live life as long and with as much strength as I can
how do you handle this all and not going nuts?
I keep on trying to fight the good fight and be of service to others through volunteerism. Also hoping the new treatments coming soon may end my infection of hep C and prolong my life there is hope for a cure.
If you are having all these kind of issues have you spoken with your health care provider? They should be able to help you with these problems. I might also suggest if you can find a support group in your community to talk with other people who share our situation and can provide emotional support.
All my best wishes to you hang in there buddy tomorrow is another day
My husband has compensated Cirrhosis. He was diagnosed in 2010 with Cirrhosis and has remained well compensated since that time. He still works. He does not have nausea. He doesn't have severe pain in the back, muscles, or stomach. He does not have muscle twitches. He doesn't feel like a shadow of what he once was. He doesn't wish to die. He handles all of this by living his life as fully as he can: taking his medications, keeping his doctor appointments, having regular follow ups with imaging and labwork with hepatologist, eating healthy, avoiding medications that can harm the liver, taking care of other health issues such as diabetes and high blood pressure and sleep apnea, exercising, and being up and about and a part of the family.
Advocate1955
Advocate1955
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