Aa
how to deal with the inevitable
hello everybody,
iam struggling more and more and the anxiety of death is killing me.iam cured of hep-c but i guess my liver wont improve,its the opposite i feel more and more sick and ill.
i know there is one last option,a life saving transplant.
but as donor livers are short i ask myself how to prepare for the worst case.
i just cant accept my fate,its a daily fight with moments of hope and then just turn into absolute hopeless and massive fears of what i have to go thru.
how do you people handle this disease with all his mental and physical complications?
how does your day looks like,how is your mental condition?
how do you find piece with the situation as she is and knowing there is no treatment?
my uncle was recently diagnosed with cancer in his lungs and his peritoneum,death sentence,just a matter of time when he has to go.but i think hes mental condition is better than mine.
i feel so overhelmed with all this and thinking all the time why.why me,iam 40 years and iam so tired of living this life.
i searched for a support group in my area but didnt find anything.
apreciate some insights from other members
regards marc
iam struggling more and more and the anxiety of death is killing me.iam cured of hep-c but i guess my liver wont improve,its the opposite i feel more and more sick and ill.
i know there is one last option,a life saving transplant.
but as donor livers are short i ask myself how to prepare for the worst case.
i just cant accept my fate,its a daily fight with moments of hope and then just turn into absolute hopeless and massive fears of what i have to go thru.
how do you people handle this disease with all his mental and physical complications?
how does your day looks like,how is your mental condition?
how do you find piece with the situation as she is and knowing there is no treatment?
my uncle was recently diagnosed with cancer in his lungs and his peritoneum,death sentence,just a matter of time when he has to go.but i think hes mental condition is better than mine.
i feel so overhelmed with all this and thinking all the time why.why me,iam 40 years and iam so tired of living this life.
i searched for a support group in my area but didnt find anything.
apreciate some insights from other members
regards marc
Thanks Kim and aritzer,I will keep up working with my pcp to find out maybe
some of the reason of my struggle.I will not give up the hope that one day I am out of this.
the hope is what keeps me going forward,going still working every day even when it's very hard sometimes.
sometimes a day feels like a week or a month.
some of the reason of my struggle.I will not give up the hope that one day I am out of this.
the hope is what keeps me going forward,going still working every day even when it's very hard sometimes.
sometimes a day feels like a week or a month.
I know with me I found myself thinking the same thing and worrying a lot and then I realized that all I can do is take care of myself and do as the Dr.
say and just let go of the rest its not easy to do but it is what you need to do to have as high quality of life as you can a person can not be so afraid of getting hit by a bus that they wont go outside they just need to watch and be carful around the road. we can not change the unchangeable and to drive your self crazy with worry will only take up what time we have on this planet. that we could spend in better ways, and vent when you need to and that seems to be working for me. I feel badly and as if I let the people down who love me by becoming sick and possably not being there for them or myself but I have to rember I did not choose this and I can not change it I just have to roll with the punches or get knocked out.
Hope this helps good luck.
say and just let go of the rest its not easy to do but it is what you need to do to have as high quality of life as you can a person can not be so afraid of getting hit by a bus that they wont go outside they just need to watch and be carful around the road. we can not change the unchangeable and to drive your self crazy with worry will only take up what time we have on this planet. that we could spend in better ways, and vent when you need to and that seems to be working for me. I feel badly and as if I let the people down who love me by becoming sick and possably not being there for them or myself but I have to rember I did not choose this and I can not change it I just have to roll with the punches or get knocked out.
Hope this helps good luck.
Marc. Came across this Inspiring thread from a few years back and thought it might be a good time to reread everyones suggestions for you.
We all care about you and want you to have a healthy and happy life. As Randy has said, this is such a great community and you are not alone.
Take care
.....Kim
We all care about you and want you to have a healthy and happy life. As Randy has said, this is such a great community and you are not alone.
Take care
.....Kim
COMMUNITY LEADER
Thank you to everyone that participated in this thread. I think it's really helpful to hear from others on how they deal with the challenges of cirrhosis. It helps us see things in a manner we have not thought of before maybe making this whole thing just a little bit easier. Also let it remind you that you are not alone in this and others here understand and are going through similar circumstances. Such a great community, thank you all!
Randy
Randy
Well here I am just finished triple therapy and was able to clear the Hep C. I have cirrhosis with hyper portal tension and esophageal varices that had to be banded 2 months ago. During my treatment my platelets fell to 2. Despite 3 platelet infusions and 1 IVIG infusion my platelets are still down around 60. Of course my DR. stopped the HCV treatment just after 24 weeks of the 48 week required time frame for treatment. It has now been over 6 months since I stopped treatment and I am still undetectable for the Hep C. My blood work is still out of norm. I just had an ultra sound done and it shows some type of mass on my liver not sure if its cyst or what??? Will be getting MRI done on 9/30/13. Wish me luck!!!
I'm so sorry for your plight. It IS a slap in the face to get the hep c cure and then face cirrhosis. I'm book marking this thread too. It is something that many of us face. I've rang Hector's bell more times than he cares to count probably.
You've heard great and inspirational advice. I look at it like PTSD. My doc and I discussed it just last week. We've been to hell and back. But we're still going.
I hope that you will stay in touch with the forum. We're a tough bunch with tender hearts.
All my best,
xo Karen:)
You've heard great and inspirational advice. I look at it like PTSD. My doc and I discussed it just last week. We've been to hell and back. But we're still going.
I hope that you will stay in touch with the forum. We're a tough bunch with tender hearts.
All my best,
xo Karen:)
COMMUNITY LEADER
You don't have to nor should you accept being depressed. Clinical depression commonly causes physical symptoms, aches, pain, fatigue, nausea and many others. The general public doesn't understand the suffering that a person goes through when they are in a major depressive episode. Depression is the major cause of suicide. Clinical depression is a potential life-threatening illness and should be treated as such.
As will all conditions or diseases we are diagnosed with it is a good idea to understand what the condition or disease is, its symptoms and treatments.
"iam diagnosed with major depression and i take now since 1 week cipralex to ease this condition,"
Cipralex usually begins to work within 2 to 4 weeks and may take longer for the full effect. So you are receiving no help from the med as yet. Hopefully it will start working in a few weeks and your depression will begin to lift. When it does the misery and pain fades and life will become enjoyable again.
"but i still cant belive a depression causes so many symptoms,wich the most i can relate to liver disease.bloating,nausea,muscle/joint pain."
"While the emotional aspects of depression are central to the experience of this condition, physical aspects are common," says Ian A. Cook, MD, associate professor in residence in the department of psychiatry and biobehavioral sciences at the David Geffen School of Medicine at UCLA in Los Angeles and research scientist at the UCLA Neuropsychiatric Institute.
Many people dealing with depression have sleep issues, says Dr. Cook. For some, that means sleeping far too much, while others have insomnia, or trouble falling asleep, at night. Depression can zap your energy, he adds, leaving you feeling exhausted — all of which takes a physical toll.
Another common physical symptom of depression is a change in appetite — either barely picking at your food or, at the other extreme, eating too much and making unhealthy food choices. Digestive problems and painful abdominal cramping are possible depression symptoms, too.
Perhaps the most difficult symptom for someone with depression to manage is pain. You might experience headaches, aches and pains all over your body, or chronic pain that worsens rather than improves. While depression may be at the root of these types of pain, chronic pain can also lead to or worsen depression symptoms. And the more severe the depression, the worse these physical symptoms will feel.
"The volume is turned up on experiences such as back pain or headache," explains Cook. "Some of this likely comes from complex connections between systems in the brain that regulate mood, sleep, energy, appetite, and pain perception."
If you have depression symptoms and don't seek treatment, any existing pain may worsen, adds Cook.
Depression in men can often be overlooked as many of us find it difficult to talk about our feelings. Instead, we tend to focus on the physical symptoms that often accompany depression, such as back pain, headaches, difficulty sleeping, or sexual problems. This can result in the underlying depression going untreated, which can have serious consequences. In fact, men suffering from depression are four times more likely to commit suicide than women. It’s important for any man to seek help with depression before feelings of despair become feelings of suicide.
Gilbert's syndrome is a common, mild liver condition in which the liver doesn't properly process a substance called bilirubin. Bilirubin is produced by the breakdown of red blood cells.
Gilbert's syndrome is a common, hereditary, mild liver condition which is typically harmless and doesn't require treatment. Although it's present from birth, Gilbert's syndrome usually isn't noticed until puberty or later, since bilirubin production increases during puberty. It's more commonly diagnosed in males. It has nothing to do with liver disease caused by hepatitis C.
"sometimes some friends telling me"you looking still good,so you cant be that sick as you telling us".in these situations i could explode and tell them to just shut up,as they cant even imagine how i feel.this ignorance from many poeple around me,including family makes me sometimes helpless,they dont know how much energy every simple day i have to bring up.i try to not show how i feel and i play the happy guy. "
Your experience is a classic experience that many people with depression experience. People with depression learn to act normal to other while inside they can be suffering from thoughts, moods and physical symptoms.
"in 10 days i have my apointment at the transplant center to disscuss my latest results and i will ask them if so,then what could cause my liver to progress despite svr. "
If hep C was the cause of your liver disease then it is obvious that once you have been cured the liver is no longer damaged further (if the disease hasn't progressed to far the liver will heal itself over time). Look at liver enzyme tests, when the are abnormally high they indicate something is damaging your liver. Besides no one can feel their liver disease progressing. It they could then the millions of people who are infected with HCV would think that there is something wrong with there livers as they develop fibrosis over decades. Liver disease is diagnosed using physical exams, blood tests, imaging studies and biopsies. Why waste all the time and money if a patient can determine that they have liver disease and how "bad" it is.
Ask your doctor about depression and its common symptoms. She/he will tell you that what you are experiencing is very typical for people with depression.
Hold on until your depression medication starts to work. When it does you will feel relief from your current thoughts and feeling which are distorted by depression.
To learn more about depression I recommend the National Alliance on Mental Illness brochure - Depression
http://www.nami.org/Template.cfm?Section=Depression&template=contentmanagement/contentdisplay.cfm&ContentID=67727
Hector
As will all conditions or diseases we are diagnosed with it is a good idea to understand what the condition or disease is, its symptoms and treatments.
"iam diagnosed with major depression and i take now since 1 week cipralex to ease this condition,"
Cipralex usually begins to work within 2 to 4 weeks and may take longer for the full effect. So you are receiving no help from the med as yet. Hopefully it will start working in a few weeks and your depression will begin to lift. When it does the misery and pain fades and life will become enjoyable again.
"but i still cant belive a depression causes so many symptoms,wich the most i can relate to liver disease.bloating,nausea,muscle/joint pain."
"While the emotional aspects of depression are central to the experience of this condition, physical aspects are common," says Ian A. Cook, MD, associate professor in residence in the department of psychiatry and biobehavioral sciences at the David Geffen School of Medicine at UCLA in Los Angeles and research scientist at the UCLA Neuropsychiatric Institute.
Many people dealing with depression have sleep issues, says Dr. Cook. For some, that means sleeping far too much, while others have insomnia, or trouble falling asleep, at night. Depression can zap your energy, he adds, leaving you feeling exhausted — all of which takes a physical toll.
Another common physical symptom of depression is a change in appetite — either barely picking at your food or, at the other extreme, eating too much and making unhealthy food choices. Digestive problems and painful abdominal cramping are possible depression symptoms, too.
Perhaps the most difficult symptom for someone with depression to manage is pain. You might experience headaches, aches and pains all over your body, or chronic pain that worsens rather than improves. While depression may be at the root of these types of pain, chronic pain can also lead to or worsen depression symptoms. And the more severe the depression, the worse these physical symptoms will feel.
"The volume is turned up on experiences such as back pain or headache," explains Cook. "Some of this likely comes from complex connections between systems in the brain that regulate mood, sleep, energy, appetite, and pain perception."
If you have depression symptoms and don't seek treatment, any existing pain may worsen, adds Cook.
Depression in men can often be overlooked as many of us find it difficult to talk about our feelings. Instead, we tend to focus on the physical symptoms that often accompany depression, such as back pain, headaches, difficulty sleeping, or sexual problems. This can result in the underlying depression going untreated, which can have serious consequences. In fact, men suffering from depression are four times more likely to commit suicide than women. It’s important for any man to seek help with depression before feelings of despair become feelings of suicide.
Gilbert's syndrome is a common, mild liver condition in which the liver doesn't properly process a substance called bilirubin. Bilirubin is produced by the breakdown of red blood cells.
Gilbert's syndrome is a common, hereditary, mild liver condition which is typically harmless and doesn't require treatment. Although it's present from birth, Gilbert's syndrome usually isn't noticed until puberty or later, since bilirubin production increases during puberty. It's more commonly diagnosed in males. It has nothing to do with liver disease caused by hepatitis C.
"sometimes some friends telling me"you looking still good,so you cant be that sick as you telling us".in these situations i could explode and tell them to just shut up,as they cant even imagine how i feel.this ignorance from many poeple around me,including family makes me sometimes helpless,they dont know how much energy every simple day i have to bring up.i try to not show how i feel and i play the happy guy. "
Your experience is a classic experience that many people with depression experience. People with depression learn to act normal to other while inside they can be suffering from thoughts, moods and physical symptoms.
"in 10 days i have my apointment at the transplant center to disscuss my latest results and i will ask them if so,then what could cause my liver to progress despite svr. "
If hep C was the cause of your liver disease then it is obvious that once you have been cured the liver is no longer damaged further (if the disease hasn't progressed to far the liver will heal itself over time). Look at liver enzyme tests, when the are abnormally high they indicate something is damaging your liver. Besides no one can feel their liver disease progressing. It they could then the millions of people who are infected with HCV would think that there is something wrong with there livers as they develop fibrosis over decades. Liver disease is diagnosed using physical exams, blood tests, imaging studies and biopsies. Why waste all the time and money if a patient can determine that they have liver disease and how "bad" it is.
Ask your doctor about depression and its common symptoms. She/he will tell you that what you are experiencing is very typical for people with depression.
Hold on until your depression medication starts to work. When it does you will feel relief from your current thoughts and feeling which are distorted by depression.
To learn more about depression I recommend the National Alliance on Mental Illness brochure - Depression
http://www.nami.org/Template.cfm?Section=Depression&template=contentmanagement/contentdisplay.cfm&ContentID=67727
Hector
iam just stunned from all the postings.
your are all wonderful people here.thanks alot
me and my psychiatrist discussed this soo many times,same with pcp.they do believe i have all these symptoms but they think i connect them to the wrong place(my liver)
iam diagnosed with major depression and i take now since 1 week cipralex to ease this condition,.venlafaxin did not help.
but i still cant belive a depression causes so many symptoms,wich the most i can relate to liver disease.bloating,nausea,muscle/joint pain.
the elevated bilirubin is another issue wich makes me belive iam dealing from liver desease.alltough my hepa believes its gilbert syndrome,as its only the indirect bilirubin wich is elevated,direct still in norm(upper norm).
they do check this now with genetic test,wich takes some time and my insurance has to give the o.k first as this test is very expensive.
with my current labs my meld is 8,child pugh is 5,but as the bilirubin could be elevated from gilbert syndrome this would falsley decrease my meld.
i know the depression makes things even worse,but iam always thinking they are all wrong(the docs)they see me and think iam a "young man" whos cured from hep-c and this is
but what they dont know is how i feel.
sometimes some friends telling me"you looking still good,so you cant be that sick as you telling us".in these situations i could explode and tell them to just shut up,as they cant even imagine how i feel.this ignorance from many poeple around me,including family makes me sometimes helpless,they dont know how much energy every simple day i have to bring up.i try to not show how i feel and i play the happy guy.
its just my wife who understands and knows how i am.
.
iam usualy not one who complains quickly,but for me i have reached my limit of suffering,and exactly this is the problem.
i thought already before 6 months i reached the limit,thinking things cant get worse,but they did,so my limit was not reached i think-
same as now,i think more nausea,pain,crying i cant handle but i guess i have to,as hector said.one have no choice.
what i will do is try accept it how it is..
in 10 days i have my apointment at the transplant center to disscuss my latest results and i will ask them if so,then what could cause my liver to progress despite svr.
if not, i have to find out if there is realy no physical reason for my symptoms
thank so much to all for your effort and help, and realy hope none takes my complaining as an offense,as i know it could be more worse,much much worse.
your are all wonderful people here.thanks alot
me and my psychiatrist discussed this soo many times,same with pcp.they do believe i have all these symptoms but they think i connect them to the wrong place(my liver)
iam diagnosed with major depression and i take now since 1 week cipralex to ease this condition,.venlafaxin did not help.
but i still cant belive a depression causes so many symptoms,wich the most i can relate to liver disease.bloating,nausea,muscle/joint pain.
the elevated bilirubin is another issue wich makes me belive iam dealing from liver desease.alltough my hepa believes its gilbert syndrome,as its only the indirect bilirubin wich is elevated,direct still in norm(upper norm).
they do check this now with genetic test,wich takes some time and my insurance has to give the o.k first as this test is very expensive.
with my current labs my meld is 8,child pugh is 5,but as the bilirubin could be elevated from gilbert syndrome this would falsley decrease my meld.
i know the depression makes things even worse,but iam always thinking they are all wrong(the docs)they see me and think iam a "young man" whos cured from hep-c and this is
but what they dont know is how i feel.
sometimes some friends telling me"you looking still good,so you cant be that sick as you telling us".in these situations i could explode and tell them to just shut up,as they cant even imagine how i feel.this ignorance from many poeple around me,including family makes me sometimes helpless,they dont know how much energy every simple day i have to bring up.i try to not show how i feel and i play the happy guy.
its just my wife who understands and knows how i am.
.
iam usualy not one who complains quickly,but for me i have reached my limit of suffering,and exactly this is the problem.
i thought already before 6 months i reached the limit,thinking things cant get worse,but they did,so my limit was not reached i think-
same as now,i think more nausea,pain,crying i cant handle but i guess i have to,as hector said.one have no choice.
what i will do is try accept it how it is..
in 10 days i have my apointment at the transplant center to disscuss my latest results and i will ask them if so,then what could cause my liver to progress despite svr.
if not, i have to find out if there is realy no physical reason for my symptoms
thank so much to all for your effort and help, and realy hope none takes my complaining as an offense,as i know it could be more worse,much much worse.
See Rexx...Advocate and Dee have some practical advice for you. Your mental attitude is 100% of everything. 100%. Everyone who survives anything will tell you that. Belief. Determination. Knowledge. They are tools. The more you know, the less you will fear.
Follow the suggestions you've been given from everyone. We all do care about each other here and we want to see each other achieve our goals. Each person has that within themselves. Don't fear the fear or life Rexx, we are right there with you....!!! If you are SVR and don't have cirrhosis then you are so very, very lucky.
Knowledge Rexx....it is the key to overcoming fears. Tell those fears to go away....that you are busy LIVING, FOLLOWING DREAMS & HOPES, LOVING and BEING HAPPY.
Follow the suggestions you've been given from everyone. We all do care about each other here and we want to see each other achieve our goals. Each person has that within themselves. Don't fear the fear or life Rexx, we are right there with you....!!! If you are SVR and don't have cirrhosis then you are so very, very lucky.
Knowledge Rexx....it is the key to overcoming fears. Tell those fears to go away....that you are busy LIVING, FOLLOWING DREAMS & HOPES, LOVING and BEING HAPPY.
As someone at my age I have noticed that it is the loss of hopes unrealized is what one fears most as they age. The hope of a new job, promotion, love, home, vacation, etc. The loss of hope is the most defeating thing as you age. -----------------------------------------------------------------------------------------------
Marc- I agree with Dee, that the responses you have received are profound and inspiring and I hope you will find solace and strength in the words you read.
Hang in there, I think you will be feeling better and reclaiming your life soon, just be patient and kind to yourself and look to others, because it is what happens between you and the others in your life that really counts in a quality life.
Marc- I agree with Dee, that the responses you have received are profound and inspiring and I hope you will find solace and strength in the words you read.
Hang in there, I think you will be feeling better and reclaiming your life soon, just be patient and kind to yourself and look to others, because it is what happens between you and the others in your life that really counts in a quality life.
Hi marc,
I wrote a response to this thread late last night, but wasn't able to send it. I'll try again! You haven't yet been diagnosed with Cirrhosis, so there is still a chance that you are f3 and your liver is regenerating and getting healthier since you obtained SVR after triple therapy. Even if you did progress to Cirrhosis, it is beginning Cirrhosis. Your labs and imaging do not demonstrate advanced Cirrhosis or End Stage Liver Disease. My husband has had Hep C for almost 40 years. He has treated and failed treatment three times. There are currently no treatment options for him, but hopefully there will be soon. In 2010 he was diagnosed with Cirrhosis, and he does everything possible to take care of his liver, but the Hep C virus continues to attack his liver daily. He has remained at beginning Cirrhosis since 2010, despite still having Hep C. His MELD is 7, it's been very stable for 3 years. He has no ascites, no HE, and no varices. He is monitored every 6 months by his hepatologist and she is very confident that he's very stable. He has regular ultrasounds or CT scans, regular colonoscopies and endoscopies, and regular lab work. She is so confident that he is stable and well monitored that she cleared him for surgery on his lumbar spine, which he had to have for quality of life (severe degenerative disc disease causing severe radiating pain to one leg/foot/toe and affecting mobility), two weeks ago, and he did fine. No bad effects on his liver from anesthesia, steroids, or pain medications from surgery. They did choose medications that would be less toxic for his liver as much as possible, but I wanted to share with you how confident his hepatologist felt that his beginning Cirrhosis is stable enough to withstand a necessary surgery, despite the fact that his Hep C virus has continued to cause damage to his liver every day since his 2010 diagnosis by biopsy of Cirrhosis. You are SVR, nothing is damaging your liver, and you have not yet been diagnosed by your hepatologist with Cirrhosis. You are in a very good place. Please, please do the work that you need to do to change your complex thought patterns that cause you to go to fear. Your irrational thoughts make you afraid, which increases your anxiety, and exacerbates your depression. Talking about and thinking about not living anymore is a sign of depression, perhaps even a major depressive episode. Again, I am not a professional, I am just giving you my thoughts as a friend. I know you have a psychiatrist, and I believe you've posted before about anti anxiety meds and anti depressant meds, but I don't know if you have a therapist. If you don't, or if you don't feel your therapy is effective, please, please, please consider therapy. It would very likely be helpful for you to learn some tools to help interrupt your obsessive thoughts and challenge your own thought patterns. Again, I'm not saying this to be judgmental or critical in any way. Your quality of life seems to be very much impacted by your obsessive thoughts, fears, and anxieties, which are very likely causing significant depression. It is amazing what the mind can do, in terms of making us feel physiological symptoms. I'm not denying that you feel sick and have pain, but if your docs have ruled out all physiological reasons, then it is your thinking pattern that is causing your pain. We care about you, we don't want you to be in pain. We can't change your thinking pattern other than to acknowledge and affirm your feelings, but you can change your thinking pattern, reduce your anxiety, and treat your depression. Part of the answer is the psychiatrist and the meds, but a big part of the answer is the work that you very likely need to do with a good therapist to learn the tools and strategies that you need to change the quality of your life.
Advocate1955
I wrote a response to this thread late last night, but wasn't able to send it. I'll try again! You haven't yet been diagnosed with Cirrhosis, so there is still a chance that you are f3 and your liver is regenerating and getting healthier since you obtained SVR after triple therapy. Even if you did progress to Cirrhosis, it is beginning Cirrhosis. Your labs and imaging do not demonstrate advanced Cirrhosis or End Stage Liver Disease. My husband has had Hep C for almost 40 years. He has treated and failed treatment three times. There are currently no treatment options for him, but hopefully there will be soon. In 2010 he was diagnosed with Cirrhosis, and he does everything possible to take care of his liver, but the Hep C virus continues to attack his liver daily. He has remained at beginning Cirrhosis since 2010, despite still having Hep C. His MELD is 7, it's been very stable for 3 years. He has no ascites, no HE, and no varices. He is monitored every 6 months by his hepatologist and she is very confident that he's very stable. He has regular ultrasounds or CT scans, regular colonoscopies and endoscopies, and regular lab work. She is so confident that he is stable and well monitored that she cleared him for surgery on his lumbar spine, which he had to have for quality of life (severe degenerative disc disease causing severe radiating pain to one leg/foot/toe and affecting mobility), two weeks ago, and he did fine. No bad effects on his liver from anesthesia, steroids, or pain medications from surgery. They did choose medications that would be less toxic for his liver as much as possible, but I wanted to share with you how confident his hepatologist felt that his beginning Cirrhosis is stable enough to withstand a necessary surgery, despite the fact that his Hep C virus has continued to cause damage to his liver every day since his 2010 diagnosis by biopsy of Cirrhosis. You are SVR, nothing is damaging your liver, and you have not yet been diagnosed by your hepatologist with Cirrhosis. You are in a very good place. Please, please do the work that you need to do to change your complex thought patterns that cause you to go to fear. Your irrational thoughts make you afraid, which increases your anxiety, and exacerbates your depression. Talking about and thinking about not living anymore is a sign of depression, perhaps even a major depressive episode. Again, I am not a professional, I am just giving you my thoughts as a friend. I know you have a psychiatrist, and I believe you've posted before about anti anxiety meds and anti depressant meds, but I don't know if you have a therapist. If you don't, or if you don't feel your therapy is effective, please, please, please consider therapy. It would very likely be helpful for you to learn some tools to help interrupt your obsessive thoughts and challenge your own thought patterns. Again, I'm not saying this to be judgmental or critical in any way. Your quality of life seems to be very much impacted by your obsessive thoughts, fears, and anxieties, which are very likely causing significant depression. It is amazing what the mind can do, in terms of making us feel physiological symptoms. I'm not denying that you feel sick and have pain, but if your docs have ruled out all physiological reasons, then it is your thinking pattern that is causing your pain. We care about you, we don't want you to be in pain. We can't change your thinking pattern other than to acknowledge and affirm your feelings, but you can change your thinking pattern, reduce your anxiety, and treat your depression. Part of the answer is the psychiatrist and the meds, but a big part of the answer is the work that you very likely need to do with a good therapist to learn the tools and strategies that you need to change the quality of your life.
Advocate1955
Hi there, if I were you I would print out all the wonderful answers you have been given, read them when you feel anxious.
I still think it is possible that what you are feeling are the after effects of treatment. It took me over a year to feel better. In that time I had pain, still do but I look at my blood work where everything is within range, not low or high in the range with liver enzymes that are lower than they have been in years so know I am improving and continue to improve. I hope the pain is just that I could not do much for a long time so my body is not toned and is suffering from that.
Maybe you should keep this post with your blood work to remind yourself that everything is looking good.
Have you had your thyroid tested? HCV and the tx can affect your thyroid. I had a post somewhere, the article is called the "Swinging Thyroid" it was informative.
Have you had any general tests to see if you might have arthritis?
I have anxiety as well however I also have my PCR that shows me UND and even better SVR.
Are you taking anything for your anxiety? Just the fact that you have good days are encouraging that you are recovering.
It takes time, please hang in there.
Dee
I still think it is possible that what you are feeling are the after effects of treatment. It took me over a year to feel better. In that time I had pain, still do but I look at my blood work where everything is within range, not low or high in the range with liver enzymes that are lower than they have been in years so know I am improving and continue to improve. I hope the pain is just that I could not do much for a long time so my body is not toned and is suffering from that.
Maybe you should keep this post with your blood work to remind yourself that everything is looking good.
Have you had your thyroid tested? HCV and the tx can affect your thyroid. I had a post somewhere, the article is called the "Swinging Thyroid" it was informative.
Have you had any general tests to see if you might have arthritis?
I have anxiety as well however I also have my PCR that shows me UND and even better SVR.
Are you taking anything for your anxiety? Just the fact that you have good days are encouraging that you are recovering.
It takes time, please hang in there.
Dee
I agree with the above posts...Hector, Advocate, Rival and several others have been helping me get through with the knowledge part of this which has been very helpful. All are inspirational people. And I find others like experiences inspirational.
I noticed that you are about 44/45? In today's world that is pretty young. I have had HCV for a long time. Was a social drinker so we figured I got HCV from transfusion, working in ER or unknown. Am a non-responder. Am 65, Stage 4 ESLD with decompensated liver at moderate level with low Meld and high HCV load. I am almost on transplant list. What Hector wrote above is beautiful.....he has been an inspiration as have others. There are many here who have had transplants and some have amazing stories.
You can always talk to me about death. I am very pragmatic and spiritual about it though. The second we take our first breath of life, death is the only thing that we are guaranteed. It's what we do in between the two that is important.
I have literally, clinically been pronounced dead 3 times and fought my way back each time. I'll be darn if I let a virus kill me. I have worked in the ER and traveled enough that I have held death in my hands and watched the last ember of life go. I have never been afraid of death. Never.
I have lost those so close to me, and in the ER those who I didn't even know. Children, babies, they were the worst. I worked in a city sector where we had to wear vests and wait for the police to come to protect us as we responded to a crisis.
I find people are more afraid they will not have the time to do all the things they want to do. That is why you simply must overcome your fears. As Hector said, find a group to talk to. You don't think you psychiatrist is helping you, find a different one. Don't live on the "what if's"...they will drive you crazy. Put one foot in front of the other and go forward. You can't go backward in any of this.
When I go to my transplant appointments I look at the crowded waiting room and more than half the people look like death warmed over. The other day I was walking down the hall and this young girl got off the elevator at the same time. She was yellow. I said, are you going to the transplant unit area. She said cheerfully, yes, how did you know. I didn't tell her it was because of her coloring I just said I had hoped so because I was kinda of lost. I wasn't but.... We sat next to each other after checking in. She was 27. She has had HCV since she was 8. Where does she get her courage. Where did she get it as a child. She thanked me for making her feel so much better as we sat and talked, exchanged email addresses.
So it is important that you get a complete health assessment from your hepatologist so you can calm your fears, It is important to know what state your liver is in, but in the meantime, make alterations to your daily diet, (( not that the diet cures HCV or liver disease but being healthy can give you more energy and focus )) Do not drink, smoke, eat red meat, watch sugar and sodium intake. Get out of your home and walk, walk, walk. And drink plenty of water. Eliminate carbonated beverages but you can have coffee and tea. Feeling better physically can help you feel better mentality.
I know what you mean about that apartment you want to buy with your wife. At your age, I would say yes, do it. As someone at my age I have noticed that it is the loss of hopes unrealized is what one fears most as they age. The hope of a new job, promotion, love, home, vacation, etc. The loss of hope is the most defeating thing as you age.
I use to see properties and sometimes buy them, call in a crew of guys that I know can flip the house and then re-sell it. I saw a house the other day and just shook my head mentality because I know I don't have the physical energy right now at the stage I am at to chase everyone down and oversee it. So to me, not being able to follow up on new challenges is sad. It is a loss of hope for now. But not forever if I don't give up trying.
I lost the love of my life in an unexpected horrendous auto accident that I saw and held his hand as he died along with a dozen other people, men, women, children. His grip on my hand was so strong. I owe it to him and my sister who died at 50 and my best friend who died at 39 to keep on living. All unexpected deaths of the 3 most important people in my life over the last few years. With death of a loved one you never can get through it, you just learn to deal with it. And dealing with it comes with the fears of living. But they are always with me.
If your circumstances do prove dire, you have to find some way to come to peace with death but you don't have to just accept it. You need to fight your fears. Knowledge is the best defense. The more you know, the more you can handle.
Everyday lately I, at any given time, I can fall in to a coma like sleep. I drift and float. I told someone the other day that even if I die I will still be here...I'll be the breathe of lilacs in the Springs, the warmth of summer heat on your skin in the dead of winter and the hand that is laid on your shoulder to give you strength. I truly believe that.
I have that in my life everyday....just when I feel that it's just too much I'll get a PM message from someone on this webpage, or I'll smell the scent of a rose perfume my sister would wear. Sometime I feel the warmth of arms around me and the summer scent of Jon's hair and skin. At night or when I fall asleep I would swear I am be spooned/cradled/held as I sleep. I am not alone...
Fear of death is just having to come to grips of your FEAR OF LIFE. Don't be afraid to live. Live it with gusto. Find new interests. Hold close those who are important to you. Find out what is REALLY important. Kiss and hug your wife everyday and let her know how important she is to you. Embrace life. Do what you can do everyday. When you can't, you can't. Rest, then try again.
Feel free to PM to me....I am not as learned as Hector, Advocate, Rival , Orphanedhawk and many others, etc., etc. but I can share life experiences. I have traveled a major portion of the world and have seen many things....some I even would question, but know they were true.
Maybe because as a kid I was a the little runt that got knocked down and always had to fight to get back up. Don't know why there were never any little girls in the neighborhood. But had to hold my own against those bully boys. Grew up that way, and my constitution refuses to give up. Fear...it's normal in all it's forms. Overcome it. If you don't, it makes you it's hostage.
I noticed that you are about 44/45? In today's world that is pretty young. I have had HCV for a long time. Was a social drinker so we figured I got HCV from transfusion, working in ER or unknown. Am a non-responder. Am 65, Stage 4 ESLD with decompensated liver at moderate level with low Meld and high HCV load. I am almost on transplant list. What Hector wrote above is beautiful.....he has been an inspiration as have others. There are many here who have had transplants and some have amazing stories.
You can always talk to me about death. I am very pragmatic and spiritual about it though. The second we take our first breath of life, death is the only thing that we are guaranteed. It's what we do in between the two that is important.
I have literally, clinically been pronounced dead 3 times and fought my way back each time. I'll be darn if I let a virus kill me. I have worked in the ER and traveled enough that I have held death in my hands and watched the last ember of life go. I have never been afraid of death. Never.
I have lost those so close to me, and in the ER those who I didn't even know. Children, babies, they were the worst. I worked in a city sector where we had to wear vests and wait for the police to come to protect us as we responded to a crisis.
I find people are more afraid they will not have the time to do all the things they want to do. That is why you simply must overcome your fears. As Hector said, find a group to talk to. You don't think you psychiatrist is helping you, find a different one. Don't live on the "what if's"...they will drive you crazy. Put one foot in front of the other and go forward. You can't go backward in any of this.
When I go to my transplant appointments I look at the crowded waiting room and more than half the people look like death warmed over. The other day I was walking down the hall and this young girl got off the elevator at the same time. She was yellow. I said, are you going to the transplant unit area. She said cheerfully, yes, how did you know. I didn't tell her it was because of her coloring I just said I had hoped so because I was kinda of lost. I wasn't but.... We sat next to each other after checking in. She was 27. She has had HCV since she was 8. Where does she get her courage. Where did she get it as a child. She thanked me for making her feel so much better as we sat and talked, exchanged email addresses.
So it is important that you get a complete health assessment from your hepatologist so you can calm your fears, It is important to know what state your liver is in, but in the meantime, make alterations to your daily diet, (( not that the diet cures HCV or liver disease but being healthy can give you more energy and focus )) Do not drink, smoke, eat red meat, watch sugar and sodium intake. Get out of your home and walk, walk, walk. And drink plenty of water. Eliminate carbonated beverages but you can have coffee and tea. Feeling better physically can help you feel better mentality.
I know what you mean about that apartment you want to buy with your wife. At your age, I would say yes, do it. As someone at my age I have noticed that it is the loss of hopes unrealized is what one fears most as they age. The hope of a new job, promotion, love, home, vacation, etc. The loss of hope is the most defeating thing as you age.
I use to see properties and sometimes buy them, call in a crew of guys that I know can flip the house and then re-sell it. I saw a house the other day and just shook my head mentality because I know I don't have the physical energy right now at the stage I am at to chase everyone down and oversee it. So to me, not being able to follow up on new challenges is sad. It is a loss of hope for now. But not forever if I don't give up trying.
I lost the love of my life in an unexpected horrendous auto accident that I saw and held his hand as he died along with a dozen other people, men, women, children. His grip on my hand was so strong. I owe it to him and my sister who died at 50 and my best friend who died at 39 to keep on living. All unexpected deaths of the 3 most important people in my life over the last few years. With death of a loved one you never can get through it, you just learn to deal with it. And dealing with it comes with the fears of living. But they are always with me.
If your circumstances do prove dire, you have to find some way to come to peace with death but you don't have to just accept it. You need to fight your fears. Knowledge is the best defense. The more you know, the more you can handle.
Everyday lately I, at any given time, I can fall in to a coma like sleep. I drift and float. I told someone the other day that even if I die I will still be here...I'll be the breathe of lilacs in the Springs, the warmth of summer heat on your skin in the dead of winter and the hand that is laid on your shoulder to give you strength. I truly believe that.
I have that in my life everyday....just when I feel that it's just too much I'll get a PM message from someone on this webpage, or I'll smell the scent of a rose perfume my sister would wear. Sometime I feel the warmth of arms around me and the summer scent of Jon's hair and skin. At night or when I fall asleep I would swear I am be spooned/cradled/held as I sleep. I am not alone...
Fear of death is just having to come to grips of your FEAR OF LIFE. Don't be afraid to live. Live it with gusto. Find new interests. Hold close those who are important to you. Find out what is REALLY important. Kiss and hug your wife everyday and let her know how important she is to you. Embrace life. Do what you can do everyday. When you can't, you can't. Rest, then try again.
Feel free to PM to me....I am not as learned as Hector, Advocate, Rival , Orphanedhawk and many others, etc., etc. but I can share life experiences. I have traveled a major portion of the world and have seen many things....some I even would question, but know they were true.
Maybe because as a kid I was a the little runt that got knocked down and always had to fight to get back up. Don't know why there were never any little girls in the neighborhood. But had to hold my own against those bully boys. Grew up that way, and my constitution refuses to give up. Fear...it's normal in all it's forms. Overcome it. If you don't, it makes you it's hostage.
COMMUNITY LEADER
Trust me you don't want me in your head! haha
When I first saw my hepatologist I told her that I want to unvarnished truth so I can make the best decisions for myself based on the facts. I tell them everything and I expect the same in return. It is a matter of mutual respect. Respect me enough to know I can handle whatever comes my way. I would never have a doctor who I didn't trust as I have also known that my cirrhosis could be fatal. I value my life and demand a lot from my doctors just like I demand a lot from myself. Honesty and trust come high on my list of essentials. My hematologist has always told me all that she knows good, bad or indifferent. My transplant hospital get the sickest of the sick in the San Francisco Bay Area. When another hospital can no longer care for a patient they are often transferred to our hospital. Sadly not everyone can be saved. Just in the transplant department we see many people that arrive too late and can't be saved. We who are involved at the transplant center see their families crying and some of the trauma that families go through. It is horrible but it is the doctor in charge of that patient that have to tell the loved ones either the patient is too ill to survive or has died. It is not something I could ever imagine how a doctor does this on a regular basis. I guess they focus on all the lives they have saved and will continue to save.
Hepatologists loose patients all the time. Not all people survive liver failure of liver cancer. Death is something they must deal with as part of their practice. Just as other specialist who deal with potentially fatal disease must do. Their is nothing to be gained by deceiving a patient. It is pointless. If someone is going to die most patients know it already.
I can tell you that when I run out of options and their is nothing they can do for me my doctor will tell me I should prepare to die. We have a very close relationship and hope that I never hear those words but if I do I want to her it from her. At that time I will ask her to help me die the way I want to die. I have already discuss this and been assured that my transplant center will continue to take care of me until I die if that is what I choose.
It is unethical for a psychiatrist in the US to deceive a patient by telling them something that can cause serious mental issues as they could tell a patient someone that could make them suicidal. Lying to a person who is terminal is of course unethical because many people who are terminal seeks psychiatric help learning to come to terms with their pending death.
Gotta run. Seeing Radiation Oncologist tomorrow morning.
You are stronger than you know.
Howie
When I first saw my hepatologist I told her that I want to unvarnished truth so I can make the best decisions for myself based on the facts. I tell them everything and I expect the same in return. It is a matter of mutual respect. Respect me enough to know I can handle whatever comes my way. I would never have a doctor who I didn't trust as I have also known that my cirrhosis could be fatal. I value my life and demand a lot from my doctors just like I demand a lot from myself. Honesty and trust come high on my list of essentials. My hematologist has always told me all that she knows good, bad or indifferent. My transplant hospital get the sickest of the sick in the San Francisco Bay Area. When another hospital can no longer care for a patient they are often transferred to our hospital. Sadly not everyone can be saved. Just in the transplant department we see many people that arrive too late and can't be saved. We who are involved at the transplant center see their families crying and some of the trauma that families go through. It is horrible but it is the doctor in charge of that patient that have to tell the loved ones either the patient is too ill to survive or has died. It is not something I could ever imagine how a doctor does this on a regular basis. I guess they focus on all the lives they have saved and will continue to save.
Hepatologists loose patients all the time. Not all people survive liver failure of liver cancer. Death is something they must deal with as part of their practice. Just as other specialist who deal with potentially fatal disease must do. Their is nothing to be gained by deceiving a patient. It is pointless. If someone is going to die most patients know it already.
I can tell you that when I run out of options and their is nothing they can do for me my doctor will tell me I should prepare to die. We have a very close relationship and hope that I never hear those words but if I do I want to her it from her. At that time I will ask her to help me die the way I want to die. I have already discuss this and been assured that my transplant center will continue to take care of me until I die if that is what I choose.
It is unethical for a psychiatrist in the US to deceive a patient by telling them something that can cause serious mental issues as they could tell a patient someone that could make them suicidal. Lying to a person who is terminal is of course unethical because many people who are terminal seeks psychiatric help learning to come to terms with their pending death.
Gotta run. Seeing Radiation Oncologist tomorrow morning.
You are stronger than you know.
Howie
i think i should fire my psychiatrist and hire you instead.
thanks so much for helping me in this hard time.
i dont know how it is in the usa,but did one of you ever seen or expirenced that a doc did not tell you the truth about your desease/prognosis just to not make you more worry that you are anyway?
i talked once to my pysychiatrist that i have sometimes the feeling that the docs know very well were iam at but keep telling me not to worry as they believe my liver will improve.
he said absolute impossible as they are not allowed to hide any infos from you as its each patient right to know all the facts and results,no matter how bad they are.
thanks so much for helping me in this hard time.
i dont know how it is in the usa,but did one of you ever seen or expirenced that a doc did not tell you the truth about your desease/prognosis just to not make you more worry that you are anyway?
i talked once to my pysychiatrist that i have sometimes the feeling that the docs know very well were iam at but keep telling me not to worry as they believe my liver will improve.
he said absolute impossible as they are not allowed to hide any infos from you as its each patient right to know all the facts and results,no matter how bad they are.
Your entire post was awesome, but this excerpt makes me just want to give you the hug of all hugs.
Beautifully said, Howie.
"We are not our afflictions. We are still human being with the same desires and needs as everyone else. Because I maybe be terminal doesn't make me any lesser or greater human being. We all have challenges in our lives. We either chance things for the better, except our limitations or stick our heads in the sand. We all have a choice how we choose to live and how we choose to die despite our external experiences."
Beautifully said, Howie.
"We are not our afflictions. We are still human being with the same desires and needs as everyone else. Because I maybe be terminal doesn't make me any lesser or greater human being. We all have challenges in our lives. We either chance things for the better, except our limitations or stick our heads in the sand. We all have a choice how we choose to live and how we choose to die despite our external experiences."
COMMUNITY LEADER
Marc
"other members here looking so strong handle this all.but i am just not strong enough to deal with this anymore.thats when dead wishes arriving altough i love the life with all the beautifull things.so much. "
I feel exactly the why you do about like. But I think you are selling yourself short regarding your strength. There is a saying "You only know how strong you are when you have no other choice but to be strong". Do you think any of us is prepared for illness, tough treatments, cirrhosis or liver cancer? Nobody is. There is no way to prepare for these things. Do you think I could ever imagined that my cancer would have gotten out of control and I am ineligible to receive the only cure for liver cancer, a liver transplant? Believe me it is a struggle most days. No one is prepared to be disabled, have limbs amputated, be diagnosed with stage 4 cancer. But these things happen. And either we learn to live with them as best we can or throw in the towel. The will to live is a very strong natural force that keeps most of us fighting and believing we can overcome our condition or learn to live with it. We are not our afflictions. We are still human being with the same desires and needs as everyone else. Because I maybe be terminal doesn't make me any lesser or greater human being. We all have challenges in our lives. We either chance things for the better, except our limitations or stick our heads in the sand. We all have a choice how we choose to live and how we choose to die despite our external experiences.
“would one see in ultrasound if a liver is decompensated or failing?”
No. An ultrasound will show a doctor if you have full cirrhosis or not as regenerative nodules will appear on the liver and portal hypertension can be measured. Also liver masses can be seen on an ultrasound and that is why it is used to screen for HCC.
would you recomendent to do a biopsy? or do you also think it will show anyway cirrhosis and would be a waste of time?
No. Since you already know you have cirrhosis the biopsy will tell you nothing more than that. I biopsy can’t tell the difference between early cirrhosis and ESLD. It can only differentiate between collagen buildup (fibrosis) in different parts of the liver lobule (between the central vein and its portal triads).
Cirrhosis is measure by the MELD score (which uses 3 blood tests), Childs Pugh scale (blood tests and degree of complications) and a patient’s complications from there cirrhosis such as ascites, HE and degree of varices. Any good hepatologist can easily distinguish how ill a patient is using blood tests and physical observation. I have met doctors who could diagnose my cirrhosis using only a stethoscope and a physical exam. Unfortunately many people only see gastroenterologist who are not experts in liver disease so the have to go through many tests for the doctor to diagnose them with cirrhosis.
Yes, please talk to your hepatologist. Express your concerns and fears and get them to respond to each one. Hepatologist at transplant center are experienced working with terminally ill patients. It is part of the job. They should be able to speak to you about your fears of death or refer you to someone who will. I speak from experience. Every now an then I have to have a heart to heart with my doctor about what the odds of me surviving are. Although I am not happy with my poor chances at least I know were I stand and then I can make my own choices. I fear the unknown more than bad news personally.
“everthing normal,no enlarged spleen,no ascites etc etc. but why i keep feeling like my liver is failing.”
Well that really is the question to be answered.
Patients who’s livers are failing are patients with ESLD. That is why it is called end-stage. Only a liver transplant can save them from dying in the near future. I have meet hundreds of patients who have had ESLD. When they talk about their experiences they don’t talk about “feeling like they are dying” they talk about the life-threatening complications of ESLD. Vomiting blood, HE comas, having their fluid buildup drain on a weekly or bi-weekly basis, being treated in ICU. “Feeling like dying” is a feeling/thought that arises in the mind and is not necessarily connected to reality. Many people who suffer from serious clinical depression have feel physically sick (pains, aches, fatigue) and thoughts/feelings that they are dying, rotting inside. I suffered with major clinical depression for many years and had these thoughts and feelings constantly. I went to doctors who could find nothing physically wrong with me. It was only when I got help for my depression did those thoughts and feelings go away. I am not a doctor and can not diagnose someone with clinical depression but what I am trying to say it that how we feel is not necessarily in sync with reality.
Many of us go through the rollercoaster of moods as we have or good days and bad. When I am in pain and suffering I am not a happy camper believe me. I have been ill in one way or another for the last 4 years and truthfully have no idea what it is like to feel normal and healthy but that doesn’t prevent me from enjoying life and the times I feel better. Suffering is very difficult but manageable. It is up to each person to find there own path to inner peace and contentment with things as they are not how we would like them to be. It is a long and twisted journey finding inner peace and it takes time. Sometimes years and it is an ongoing process for those of us who are progressively becoming gravely ill.
According to info you provided you have early cirrhosis at the worse. There are many people in the same condition as yourself. As you now have cured your hepatitis C you liver will heal itself over time. You are extremely lucky to have cured the cause of your liver disease before it became reversible. You should have a normal lifespan.
I am not sure why you say “I may not have that long on the planet” as there is no medical basis for thinking that your health will improve over time.
Medical speaking for the info you have provided they is no reason you won't have a normal lifespan and because you are so young you have many decades of life to live. I won't have a normal life span ahead of me in the best of circumstances. I know that and I accept that. For me life is about quality not quantity. That I would live until old age is fine with me. I don't want to become weak and feeble and have multiple heath issues as my body breaks down due to old age frankly. I feel that I appreciate life more knowing it is limited and knowing there is no better time than know to enjoy every minute of it as best I can whether everything is perfect and great or I am suffering. For me I rather be alive and suffering than be dead and not suffering.
Sometimes the darkest night is just before dawn.
Howie
"other members here looking so strong handle this all.but i am just not strong enough to deal with this anymore.thats when dead wishes arriving altough i love the life with all the beautifull things.so much. "
I feel exactly the why you do about like. But I think you are selling yourself short regarding your strength. There is a saying "You only know how strong you are when you have no other choice but to be strong". Do you think any of us is prepared for illness, tough treatments, cirrhosis or liver cancer? Nobody is. There is no way to prepare for these things. Do you think I could ever imagined that my cancer would have gotten out of control and I am ineligible to receive the only cure for liver cancer, a liver transplant? Believe me it is a struggle most days. No one is prepared to be disabled, have limbs amputated, be diagnosed with stage 4 cancer. But these things happen. And either we learn to live with them as best we can or throw in the towel. The will to live is a very strong natural force that keeps most of us fighting and believing we can overcome our condition or learn to live with it. We are not our afflictions. We are still human being with the same desires and needs as everyone else. Because I maybe be terminal doesn't make me any lesser or greater human being. We all have challenges in our lives. We either chance things for the better, except our limitations or stick our heads in the sand. We all have a choice how we choose to live and how we choose to die despite our external experiences.
“would one see in ultrasound if a liver is decompensated or failing?”
No. An ultrasound will show a doctor if you have full cirrhosis or not as regenerative nodules will appear on the liver and portal hypertension can be measured. Also liver masses can be seen on an ultrasound and that is why it is used to screen for HCC.
would you recomendent to do a biopsy? or do you also think it will show anyway cirrhosis and would be a waste of time?
No. Since you already know you have cirrhosis the biopsy will tell you nothing more than that. I biopsy can’t tell the difference between early cirrhosis and ESLD. It can only differentiate between collagen buildup (fibrosis) in different parts of the liver lobule (between the central vein and its portal triads).
Cirrhosis is measure by the MELD score (which uses 3 blood tests), Childs Pugh scale (blood tests and degree of complications) and a patient’s complications from there cirrhosis such as ascites, HE and degree of varices. Any good hepatologist can easily distinguish how ill a patient is using blood tests and physical observation. I have met doctors who could diagnose my cirrhosis using only a stethoscope and a physical exam. Unfortunately many people only see gastroenterologist who are not experts in liver disease so the have to go through many tests for the doctor to diagnose them with cirrhosis.
Yes, please talk to your hepatologist. Express your concerns and fears and get them to respond to each one. Hepatologist at transplant center are experienced working with terminally ill patients. It is part of the job. They should be able to speak to you about your fears of death or refer you to someone who will. I speak from experience. Every now an then I have to have a heart to heart with my doctor about what the odds of me surviving are. Although I am not happy with my poor chances at least I know were I stand and then I can make my own choices. I fear the unknown more than bad news personally.
“everthing normal,no enlarged spleen,no ascites etc etc. but why i keep feeling like my liver is failing.”
Well that really is the question to be answered.
Patients who’s livers are failing are patients with ESLD. That is why it is called end-stage. Only a liver transplant can save them from dying in the near future. I have meet hundreds of patients who have had ESLD. When they talk about their experiences they don’t talk about “feeling like they are dying” they talk about the life-threatening complications of ESLD. Vomiting blood, HE comas, having their fluid buildup drain on a weekly or bi-weekly basis, being treated in ICU. “Feeling like dying” is a feeling/thought that arises in the mind and is not necessarily connected to reality. Many people who suffer from serious clinical depression have feel physically sick (pains, aches, fatigue) and thoughts/feelings that they are dying, rotting inside. I suffered with major clinical depression for many years and had these thoughts and feelings constantly. I went to doctors who could find nothing physically wrong with me. It was only when I got help for my depression did those thoughts and feelings go away. I am not a doctor and can not diagnose someone with clinical depression but what I am trying to say it that how we feel is not necessarily in sync with reality.
Many of us go through the rollercoaster of moods as we have or good days and bad. When I am in pain and suffering I am not a happy camper believe me. I have been ill in one way or another for the last 4 years and truthfully have no idea what it is like to feel normal and healthy but that doesn’t prevent me from enjoying life and the times I feel better. Suffering is very difficult but manageable. It is up to each person to find there own path to inner peace and contentment with things as they are not how we would like them to be. It is a long and twisted journey finding inner peace and it takes time. Sometimes years and it is an ongoing process for those of us who are progressively becoming gravely ill.
According to info you provided you have early cirrhosis at the worse. There are many people in the same condition as yourself. As you now have cured your hepatitis C you liver will heal itself over time. You are extremely lucky to have cured the cause of your liver disease before it became reversible. You should have a normal lifespan.
I am not sure why you say “I may not have that long on the planet” as there is no medical basis for thinking that your health will improve over time.
Medical speaking for the info you have provided they is no reason you won't have a normal lifespan and because you are so young you have many decades of life to live. I won't have a normal life span ahead of me in the best of circumstances. I know that and I accept that. For me life is about quality not quantity. That I would live until old age is fine with me. I don't want to become weak and feeble and have multiple heath issues as my body breaks down due to old age frankly. I feel that I appreciate life more knowing it is limited and knowing there is no better time than know to enjoy every minute of it as best I can whether everything is perfect and great or I am suffering. For me I rather be alive and suffering than be dead and not suffering.
Sometimes the darkest night is just before dawn.
Howie
thanks again for all the great support,
it feels so good to know that there are some poeple with such a great heart and character out there who care and know what iam going thru.even i never met one of you in real life.
for me its helpfull to know that there are poeple fighting the same battle.
when i look back the last months i often wonder how i made it to get up every day again knowing it will be another day of darkness and crying.
but there are some days where i feel good,no pain,,no bloating,no nausea even have some appetite.
when these rare moments arrive i taste every minute of it,knowing the next day would be likely a 180 degree turn.
its sometimes just so gruelling living like that,and i often think life could be so beautiful.
sometimes when i see people on the streets or elsewhere i think to myself "how happy must they are ,living a life without a serious desease"
i know one can not see if someone is sick or not,maybe some of these poeple i see carry a bigger burden as i do.
it feels so good to know that there are some poeple with such a great heart and character out there who care and know what iam going thru.even i never met one of you in real life.
for me its helpfull to know that there are poeple fighting the same battle.
when i look back the last months i often wonder how i made it to get up every day again knowing it will be another day of darkness and crying.
but there are some days where i feel good,no pain,,no bloating,no nausea even have some appetite.
when these rare moments arrive i taste every minute of it,knowing the next day would be likely a 180 degree turn.
its sometimes just so gruelling living like that,and i often think life could be so beautiful.
sometimes when i see people on the streets or elsewhere i think to myself "how happy must they are ,living a life without a serious desease"
i know one can not see if someone is sick or not,maybe some of these poeple i see carry a bigger burden as i do.
what i forgot to ask is,do you still plan your life as you would have normal lifespan in front of you? --------------------------------------------------------------------
A resounding Yes! What we feel is not necessarily reality. You will likely be here for a very long time. Put your stake down and claim your life.
I am familiar with the death wishes as well as the fear. I think most of us have experienced the fear and dread you write about.
I do believe in your case much of this depression is a result of the interferon you were on.
See if you can find a knowledgeable, experienced therapist who can help you through this time. You are not alone.
All the best to you
A resounding Yes! What we feel is not necessarily reality. You will likely be here for a very long time. Put your stake down and claim your life.
I am familiar with the death wishes as well as the fear. I think most of us have experienced the fear and dread you write about.
I do believe in your case much of this depression is a result of the interferon you were on.
See if you can find a knowledgeable, experienced therapist who can help you through this time. You are not alone.
All the best to you
Wow, I'm bookmarking this thread as a keeper. I am just blown away by the wisdom and insight that Howie and Randy reveal in these responses. You two should collaborate and write a book on this subject - I'm serious. You may not have the energy at this point, but goodness knows you have the knowledge, the personal experience, and a clear, cogent way of expressing these very important points. Like Marc, I tend to be a worrier - and your replies to Marc have helped me today more than I can express. But thank you nonetheless!
what i forgot to ask is,do you still plan your life as you would have normal lifespan in front of you?
me and my wife looking already for a while to buy an appartement but i dont know if should beause i think i will be not that long around this planet.
but i dont want to block my wifes life and plans we/she have.
marc
me and my wife looking already for a while to buy an appartement but i dont know if should beause i think i will be not that long around this planet.
but i dont want to block my wifes life and plans we/she have.
marc
hector,
thank you so much for your view on these things.it all sounds so understandable what you are writing and i think i never seen poeple with more inner strenght and spirit as you have.
also other members here looking so strong handle this all.but i am just not strong enough to deal with this anymore.thats when dead wishes arriving altough i love the life with all the beautifull things.so much.
for me its always a change from hope and hopelessness.when i feel fine one day iam sometimes euphoric how good it feels to just feel normal.
but when i have the pains and nausea the anxiety is eating me up and i feel like a little piece of misery..
i guess i realy have to talk to my hepatologist at the transplant center to know whats going on,
sometimes i think they know exactly whats happen with me but wont tell me for not make me even more scared,but as far as i know they are not allowed to hide facts they know from you.
my last us,showed everthing normal,no enlarged spleen,no ascites etc etc.
but why i keep feeling like my liver is failing.
would one see in ultrasound if a liver is decompensated or failing?
would you recomendent to do a biopsy?or do you also think it will show anyway cirrhosis and would be a waste of time?
thanks for all the help
marc
thank you so much for your view on these things.it all sounds so understandable what you are writing and i think i never seen poeple with more inner strenght and spirit as you have.
also other members here looking so strong handle this all.but i am just not strong enough to deal with this anymore.thats when dead wishes arriving altough i love the life with all the beautifull things.so much.
for me its always a change from hope and hopelessness.when i feel fine one day iam sometimes euphoric how good it feels to just feel normal.
but when i have the pains and nausea the anxiety is eating me up and i feel like a little piece of misery..
i guess i realy have to talk to my hepatologist at the transplant center to know whats going on,
sometimes i think they know exactly whats happen with me but wont tell me for not make me even more scared,but as far as i know they are not allowed to hide facts they know from you.
my last us,showed everthing normal,no enlarged spleen,no ascites etc etc.
but why i keep feeling like my liver is failing.
would one see in ultrasound if a liver is decompensated or failing?
would you recomendent to do a biopsy?or do you also think it will show anyway cirrhosis and would be a waste of time?
thanks for all the help
marc
COMMUNITY LEADER
Hi marc.
I am very sorry you are going through this difficult period. Please hold on until a better day comes along. Luckily our emotions come and go like waves. Not according to our timing unfortunately but they do come and go which makes life bearable. We can't live in constant fear/anxiety about death. It drains us We have defense systems that come to our aid when we are overwhelmed. There is nothing wrong with having our defenses creating denial, distractions, anger and many other things to soften the impact of our fears and worries.
The first thing I would say is that death from liver disease NOT inevitable. Liver transplant is the last resort for those with liver disease but it is highly effective and people go on afterwards to live full and happy lives. While it is true there is a serious shortage of donor livers the vast majority of patients with liver failure do receive transplants if they are on the waiting list. In fact only about 10% of patients on transplant waiting lists die waiting for a liver that doesn't come in time. Fear of not receiving a transplant is just not something that someone should even worry about. So the reality is very different for the worse case scenarios we conjure up in our minds about the unknown. Fear feeds on the unknown. Once we know that facts we realize that there have never been better odds of surviving liver disease then today.
The best thing anyone with cirrhosis can do is be under the care of a transplant center. They will be give preventative treatments and monitor patients constantly so if issues such as complications of cirrhosis arise they be treated early and stopped before they become more serious. This is the same type of care anyone with a potentially life-threatening illness needs. There are many options available patients whatever their situation before they become terminal. Transplant centers focus on keep patients as healthy as possible for as long as possible. Surveillance for HCC is implemented as many patients develop HCC before their cirrhosis becomes advanced. HCC has its own development and prognosis that is different then those with liver disease only. With liver disease it is only when a patient develops ESLD that life-threatening complications of cirrhosis appear. It is only when a patient develops ascites, bleeding varices, etc. and patients have MELD scores typically in the upper 20s of 30 do they have an increased risk of dying. Patients with compensated cirrhosis have little increased risk of death.
Another problem that I see often at my transplant center is that the vast majority of folks with cirrhosis listed at transplant centers have never even met a person who has had a liver transplant. So they don't understand what everyone who has had a transplant goes through and how really ill people have to be to get a transplant and then how a person after transplant has a second chance at life and can have a full and happy life.
If you were to ever be close to death there are many things a person can do to manage the feelings and thoughts that arise in that situation.
For myself and some of my friends with terminal stage 4 cancers we all find the best ways that work for us. Everyone is different and has their own concept of what death means to them. Since I have been ineligible for a liver transplant since March of this year and had 4 failed cancer treatments for my HCC I know the odds against me living must longer are very high. But that doesn't mean I stop living or roll up in a ball and wait for death. As long as I have any options I will try them in hope that something may work and save me. Hope is separate from the cold facts. We can have hope even if things look bleak. No thing or person can ever make you lose hope. It is an internal thing that we can find within us when need it. For those that suffer much, hope my be all that they have. People do find a way to carry on under the most daunting of circumstances. In situations far worse than mine that I can even imagine.
Here is some of the resources that I have found helpful for me in dealing with my own mortally.
Death is not a subject that I find can be talked about with my friends or others who have not either cared for dying patients are have faced death themselves. So I have looked elsewhere to get support. I have a therapist who has worked with many dying patients so I can talk about my fears about dying. She has been supportive throughout the last 6 years since I developed cirrhosis and the last 26 months since I was diagnosed with HCC.
I am also a member of a cancer support group where most of us are facing death in the near term. Most of the folks have stage 4 cancers of various parts of their bodies. Being in a group where everyone understands what you are going through is very liberating and we are all very close and try to help who ever it going through the tough turn of events that can happen from week to week. I really can say enough about support groups of folk who are in the same boat. It has been life-changing and one of the best and most profound experiences of my life. I feel honored to know such brave and wise people.
There are also many books I death and dying that I found helpful when I first realize that this may be the final chapter of my life.
Then there are the practical steps that anyone who is potentially terminal should do. Do your will, fill out a DNR (Do Not Resuscitate) hospital form if that is your choice, decide to be an organ/tissue donor so others won't have to die needlessly, and prepare what you want done with your body (funeral arrangements, cremation, etc). Of course each patient must have a primary care giver and make sure that your wishes are known to at least them so you choices who will speak for you when you are unable to and who will make sure that your wishes upon your death will be fulfilled.
I guess what I am saying is that our fear of death can be dealt with at least to some degree. Yes the fear, terror, loss, sadness, anger is still there but it takes some of the weight of death off our shoulders. That way we can feel grateful for everyday we are alive even when we are in pain, physical or mental. Personally facing death has taught me more about life then I ever could have imagined. It has also freed me from all of the petty worries I used to have about things that really don't matter. It has a way of teaching you who you are deep down, what your values are and how lucky we are me every moment of life. For me and many others that I know who are facing death in the near-term our illness have not been all bad. We know who we loved and who loves us despite our illnesses. We are not or illness. We are people doing the best we can under the circumstances just like most people. We all have challenges in life because we have a fatal illness doesn't make us different then anyone else. We have the same thoughts, feelings, desires and hopes as everyone else.
Please find a way to share your fears with someone you trust and find out what the reality of the situation is. Your doctor should tell you what your medical prognosis is, so ask. Most of our fears are unfounded so getting the facts is very important and usually a relief when we find out things are as bad as we have imagined. In most cares liver disease is not fatal as long as a person is receiving proper medical care at a transplant center. Most transplant centers have mental health services of some sort for patients facing death. So that is another resource that is available for waiting-list patients.
I hope you find something that might be helpful to you above.
If there is any way I can help please feel free to contact me. I will share all I know from my own experience and my friends who have faced death.
Hang in there.
Howie
I am very sorry you are going through this difficult period. Please hold on until a better day comes along. Luckily our emotions come and go like waves. Not according to our timing unfortunately but they do come and go which makes life bearable. We can't live in constant fear/anxiety about death. It drains us We have defense systems that come to our aid when we are overwhelmed. There is nothing wrong with having our defenses creating denial, distractions, anger and many other things to soften the impact of our fears and worries.
The first thing I would say is that death from liver disease NOT inevitable. Liver transplant is the last resort for those with liver disease but it is highly effective and people go on afterwards to live full and happy lives. While it is true there is a serious shortage of donor livers the vast majority of patients with liver failure do receive transplants if they are on the waiting list. In fact only about 10% of patients on transplant waiting lists die waiting for a liver that doesn't come in time. Fear of not receiving a transplant is just not something that someone should even worry about. So the reality is very different for the worse case scenarios we conjure up in our minds about the unknown. Fear feeds on the unknown. Once we know that facts we realize that there have never been better odds of surviving liver disease then today.
The best thing anyone with cirrhosis can do is be under the care of a transplant center. They will be give preventative treatments and monitor patients constantly so if issues such as complications of cirrhosis arise they be treated early and stopped before they become more serious. This is the same type of care anyone with a potentially life-threatening illness needs. There are many options available patients whatever their situation before they become terminal. Transplant centers focus on keep patients as healthy as possible for as long as possible. Surveillance for HCC is implemented as many patients develop HCC before their cirrhosis becomes advanced. HCC has its own development and prognosis that is different then those with liver disease only. With liver disease it is only when a patient develops ESLD that life-threatening complications of cirrhosis appear. It is only when a patient develops ascites, bleeding varices, etc. and patients have MELD scores typically in the upper 20s of 30 do they have an increased risk of dying. Patients with compensated cirrhosis have little increased risk of death.
Another problem that I see often at my transplant center is that the vast majority of folks with cirrhosis listed at transplant centers have never even met a person who has had a liver transplant. So they don't understand what everyone who has had a transplant goes through and how really ill people have to be to get a transplant and then how a person after transplant has a second chance at life and can have a full and happy life.
If you were to ever be close to death there are many things a person can do to manage the feelings and thoughts that arise in that situation.
For myself and some of my friends with terminal stage 4 cancers we all find the best ways that work for us. Everyone is different and has their own concept of what death means to them. Since I have been ineligible for a liver transplant since March of this year and had 4 failed cancer treatments for my HCC I know the odds against me living must longer are very high. But that doesn't mean I stop living or roll up in a ball and wait for death. As long as I have any options I will try them in hope that something may work and save me. Hope is separate from the cold facts. We can have hope even if things look bleak. No thing or person can ever make you lose hope. It is an internal thing that we can find within us when need it. For those that suffer much, hope my be all that they have. People do find a way to carry on under the most daunting of circumstances. In situations far worse than mine that I can even imagine.
Here is some of the resources that I have found helpful for me in dealing with my own mortally.
Death is not a subject that I find can be talked about with my friends or others who have not either cared for dying patients are have faced death themselves. So I have looked elsewhere to get support. I have a therapist who has worked with many dying patients so I can talk about my fears about dying. She has been supportive throughout the last 6 years since I developed cirrhosis and the last 26 months since I was diagnosed with HCC.
I am also a member of a cancer support group where most of us are facing death in the near term. Most of the folks have stage 4 cancers of various parts of their bodies. Being in a group where everyone understands what you are going through is very liberating and we are all very close and try to help who ever it going through the tough turn of events that can happen from week to week. I really can say enough about support groups of folk who are in the same boat. It has been life-changing and one of the best and most profound experiences of my life. I feel honored to know such brave and wise people.
There are also many books I death and dying that I found helpful when I first realize that this may be the final chapter of my life.
Then there are the practical steps that anyone who is potentially terminal should do. Do your will, fill out a DNR (Do Not Resuscitate) hospital form if that is your choice, decide to be an organ/tissue donor so others won't have to die needlessly, and prepare what you want done with your body (funeral arrangements, cremation, etc). Of course each patient must have a primary care giver and make sure that your wishes are known to at least them so you choices who will speak for you when you are unable to and who will make sure that your wishes upon your death will be fulfilled.
I guess what I am saying is that our fear of death can be dealt with at least to some degree. Yes the fear, terror, loss, sadness, anger is still there but it takes some of the weight of death off our shoulders. That way we can feel grateful for everyday we are alive even when we are in pain, physical or mental. Personally facing death has taught me more about life then I ever could have imagined. It has also freed me from all of the petty worries I used to have about things that really don't matter. It has a way of teaching you who you are deep down, what your values are and how lucky we are me every moment of life. For me and many others that I know who are facing death in the near-term our illness have not been all bad. We know who we loved and who loves us despite our illnesses. We are not or illness. We are people doing the best we can under the circumstances just like most people. We all have challenges in life because we have a fatal illness doesn't make us different then anyone else. We have the same thoughts, feelings, desires and hopes as everyone else.
Please find a way to share your fears with someone you trust and find out what the reality of the situation is. Your doctor should tell you what your medical prognosis is, so ask. Most of our fears are unfounded so getting the facts is very important and usually a relief when we find out things are as bad as we have imagined. In most cares liver disease is not fatal as long as a person is receiving proper medical care at a transplant center. Most transplant centers have mental health services of some sort for patients facing death. So that is another resource that is available for waiting-list patients.
I hope you find something that might be helpful to you above.
If there is any way I can help please feel free to contact me. I will share all I know from my own experience and my friends who have faced death.
Hang in there.
Howie
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