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Husband diagnosed with esld 3 years ago, no treatment or testing since.
I believe that he feels either untreatable or unworthy due to our addiction. He seems to have little to no problems with fatigue or pain, he performs relatively physical tasks daily and is self motivated. The only outstanding symptoms are his memory and some issues with motor skills. He loses everything, this could be attributed to daily meth use or smoking Marijuana. He has been observed dropping items somewhat more than normal, that seems to be the only motor impairment.
I have urged him to see a doctor, I suspect that our substance abuse is why he refuses to seek treatment. The obvious solution is treating our addiction, but I don't think that alone is a reason that he would be denied treatment. I would expect to be urged to address our peripheral issues, and if he is given some hope that treatment for his illness gives him a reasonable expectation of improvement in his quality of life, that he may be willing to consider the options for taking better care of himself and us. I have read that it may be possible to have a few good years, even dying from unrelated or natural causes. His lifestyle has more risk factors than substance abuse and esld, although they are probably the most damaging and urgent. We are approaching our senior years, so I don't need a sermon, nor do I expect miracles. I'm aware that a transplant is not an option. From what I've read, transplants go to those who are most likely to be successful, whose circumstances and reliability are ideal.
At the very least, I think he needs to be re-evaluated, misdiagnosis is a possibility, albeit not likely. What I'm seeking here is a voice that he may be willing to listen to, words from others who may have been where we are, that he can and should see a doctor. Is there a reasonable expectation that he will be treated, even while actively using? If this is a possibility he may give it a chance, opening the door to other positive changes. And be honest, if there are limitations based on what we are doing today, let us know what to expect so we may consider our options and know what we have to do to proceed. A surprise roadblock could mean the last and only attempt to change our lives, so I need to have the truth if I want to avoid a point of failure.
Please understand that I know meth is probably the worst thing for esld. We are addicts and we know that this issue must also be addressed as well. Success depends on treating both problems. I get all of that. Without hope I don't expect there to be incentive to change. Too much assertion about the addiction component won't be helpful. If that's all you can offer for advice, it will be counterproductive. If treatment is not possible under the circumstances, just say so.
Thank you for reading my long winded request for information.
I have urged him to see a doctor, I suspect that our substance abuse is why he refuses to seek treatment. The obvious solution is treating our addiction, but I don't think that alone is a reason that he would be denied treatment. I would expect to be urged to address our peripheral issues, and if he is given some hope that treatment for his illness gives him a reasonable expectation of improvement in his quality of life, that he may be willing to consider the options for taking better care of himself and us. I have read that it may be possible to have a few good years, even dying from unrelated or natural causes. His lifestyle has more risk factors than substance abuse and esld, although they are probably the most damaging and urgent. We are approaching our senior years, so I don't need a sermon, nor do I expect miracles. I'm aware that a transplant is not an option. From what I've read, transplants go to those who are most likely to be successful, whose circumstances and reliability are ideal.
At the very least, I think he needs to be re-evaluated, misdiagnosis is a possibility, albeit not likely. What I'm seeking here is a voice that he may be willing to listen to, words from others who may have been where we are, that he can and should see a doctor. Is there a reasonable expectation that he will be treated, even while actively using? If this is a possibility he may give it a chance, opening the door to other positive changes. And be honest, if there are limitations based on what we are doing today, let us know what to expect so we may consider our options and know what we have to do to proceed. A surprise roadblock could mean the last and only attempt to change our lives, so I need to have the truth if I want to avoid a point of failure.
Please understand that I know meth is probably the worst thing for esld. We are addicts and we know that this issue must also be addressed as well. Success depends on treating both problems. I get all of that. Without hope I don't expect there to be incentive to change. Too much assertion about the addiction component won't be helpful. If that's all you can offer for advice, it will be counterproductive. If treatment is not possible under the circumstances, just say so.
Thank you for reading my long winded request for information.
Hi and welcome.
I am so sorry to hear about your difficult situation.
When you are asking about treatment do you mean for his cirrhosis? Do you know the cause of his cirrhosis does he have hepatitis c for example?
For those with cirrhosis the first thing to be done if possible is to prevent further liver damage by eliminated the cause. For those who have cirrhosis from alcohol abuse for example the patient will do themself a world of good by stopping drinking. For those whose cirrhosis is caused by hep c they can be treated and cured of hep c preventing further damage. In either situation this will allow the liver to heal but how much healing can occur will depend in how much damage is already present and if there are other causes like being obese can also cause liver damage.
Can his cirrhosis be treated even if he is using I should think so but he would likely be advised to stop using and be offered counseling to help. If his cirrhosis is very advanced and he needs a liver transplant to survive he would not be eligible to be on the transplant while using. I believe the requirement is 6 months clean.
Treatment for cirrhosis is basically treating symptoms as they arise. There is no treatment for cirrhosis itself. The only hope is to eliminate the cause and hope for improvement with time assuming there is enough functioning liver remaining.
If he has hep c there is treatment available to cure most patients but whether his insurance will allow treatment for someone who is using that varies between insurance plans.
Has he had an upper endoscopy to check for esophageal varicies? Those are enlarged blood vessels in the swallowing tube that can enlarge to the point they can burst and the person can bleed to death it is one of the ways cirrhosis can end life.
There is another complication of cirrhosis called hepatic encephalopathy.
Symptoms may include:
Cognitive: confusion or memory loss
Also common: fatigue, flapping hand tremor, sleepiness, breath with sweet or musty odor, irritability, or slurred speech.
You asked can he be treated for cirrhosis while using. I believe they have to treat him for his symptoms and perform testing to determine the extent of damage. There is no treatment for cirrhosis only eliminated the cause if possible.
If he has hep c will they treat him if he is using? That is a harder question to answer the only way to know is to ask.
Just to add I was diagnosed in Jan 2008 with cirrhosis caused by hep c. I was cured of hep c in May 2015 but I still have cirrhosis. Now with cure hopefully I won't get worse and I may be able to improve with time especially if I take care of my health with diet and exercise.
I guess the bottom line is does he want to live and is he willing to do what he needs to do to save his own life.
I hope this helps,
Lynn
I am so sorry to hear about your difficult situation.
When you are asking about treatment do you mean for his cirrhosis? Do you know the cause of his cirrhosis does he have hepatitis c for example?
For those with cirrhosis the first thing to be done if possible is to prevent further liver damage by eliminated the cause. For those who have cirrhosis from alcohol abuse for example the patient will do themself a world of good by stopping drinking. For those whose cirrhosis is caused by hep c they can be treated and cured of hep c preventing further damage. In either situation this will allow the liver to heal but how much healing can occur will depend in how much damage is already present and if there are other causes like being obese can also cause liver damage.
Can his cirrhosis be treated even if he is using I should think so but he would likely be advised to stop using and be offered counseling to help. If his cirrhosis is very advanced and he needs a liver transplant to survive he would not be eligible to be on the transplant while using. I believe the requirement is 6 months clean.
Treatment for cirrhosis is basically treating symptoms as they arise. There is no treatment for cirrhosis itself. The only hope is to eliminate the cause and hope for improvement with time assuming there is enough functioning liver remaining.
If he has hep c there is treatment available to cure most patients but whether his insurance will allow treatment for someone who is using that varies between insurance plans.
Has he had an upper endoscopy to check for esophageal varicies? Those are enlarged blood vessels in the swallowing tube that can enlarge to the point they can burst and the person can bleed to death it is one of the ways cirrhosis can end life.
There is another complication of cirrhosis called hepatic encephalopathy.
Symptoms may include:
Cognitive: confusion or memory loss
Also common: fatigue, flapping hand tremor, sleepiness, breath with sweet or musty odor, irritability, or slurred speech.
You asked can he be treated for cirrhosis while using. I believe they have to treat him for his symptoms and perform testing to determine the extent of damage. There is no treatment for cirrhosis only eliminated the cause if possible.
If he has hep c will they treat him if he is using? That is a harder question to answer the only way to know is to ask.
Just to add I was diagnosed in Jan 2008 with cirrhosis caused by hep c. I was cured of hep c in May 2015 but I still have cirrhosis. Now with cure hopefully I won't get worse and I may be able to improve with time especially if I take care of my health with diet and exercise.
I guess the bottom line is does he want to live and is he willing to do what he needs to do to save his own life.
I hope this helps,
Lynn
2 Comments
Thank you for your honest answers. I just found the information i had noted about this site, that's why i haven't acknowledged your answer.
Yes, he has hep c and he knows about Harvoni. He shows no interest in knowing anything about his illness or the many ways he could die or suffer. I believe that he does have hepatic encephalopathy. He forgets- everything in his short term memory. Its constant.. And he becomes agitated by the slightest annoyances. Some of his symptoms are more difficult pin down as drug or illness related. Its nearly impossible to discuss anything with him unless it's favorable to him, as in praise or compliments. His organization methods are those of a person that has short circuited their brain.
It's been 3 1/2 years since the doctor said he had end stage liver disease. He hasn't seen a doctor since, so no enzyme tests, no way to know the progression of the damage to his liver. I don't know his exact bmi, but hes not overweight. I am aware of portal hypertension, the varicies hemmoraging. I also know that he could suddenly slip into a coma due to an infected brain.
Since you're the only one who responded I assume that without some aggressive changes, there is almost no hope. I think he's given up, and i have been suffering from depression for a long time, unable to function productively for over 10 years. I'm not suicidal at all but my quality of life is poor. I am also waiting for the merciful end to my suffering. I wish I could give my life to a worthy soul who enjoys life. I don't.
We're just another tragic statistic at the bottom of the food chan.
You sound positive, wanting life and willing to fight for it. I hope things go well for you. Thank you for the generous gift of your time.
Yes, he has hep c and he knows about Harvoni. He shows no interest in knowing anything about his illness or the many ways he could die or suffer. I believe that he does have hepatic encephalopathy. He forgets- everything in his short term memory. Its constant.. And he becomes agitated by the slightest annoyances. Some of his symptoms are more difficult pin down as drug or illness related. Its nearly impossible to discuss anything with him unless it's favorable to him, as in praise or compliments. His organization methods are those of a person that has short circuited their brain.
It's been 3 1/2 years since the doctor said he had end stage liver disease. He hasn't seen a doctor since, so no enzyme tests, no way to know the progression of the damage to his liver. I don't know his exact bmi, but hes not overweight. I am aware of portal hypertension, the varicies hemmoraging. I also know that he could suddenly slip into a coma due to an infected brain.
Since you're the only one who responded I assume that without some aggressive changes, there is almost no hope. I think he's given up, and i have been suffering from depression for a long time, unable to function productively for over 10 years. I'm not suicidal at all but my quality of life is poor. I am also waiting for the merciful end to my suffering. I wish I could give my life to a worthy soul who enjoys life. I don't.
We're just another tragic statistic at the bottom of the food chan.
You sound positive, wanting life and willing to fight for it. I hope things go well for you. Thank you for the generous gift of your time.
Hi sorry just saw this.
If he wants to live he has to help himself. That would be first getting treated for hep c and cured to stop the damage to his liver from hepatitis c.
He also has to stop self harm to his liver and drug or alcohol use. He still has time to live a longer life if he takes the actions that he needs to do.
Cirrhosis is ESLD end stage liver disease. ESLD does no mean end of life it means you have reached the highest levels of live damage at cirrhosis there is no higher level so "end stage". Patients are further divided by compensated ESLD those with less damaged livers that are able to perform the livers essential functions and decompensated ESLD where the liver is to badly damaged and can no longer cope with the normal work load of the liver and the system begins to break down.
People can live for many years with ESLD especially with care. I was diagnosed with cirrhosis or ESLD in Jan 2008 so 9.5 years ago and am still hanging in there.
To be honest if he wants to live he needs to be treated for hep c to stop that damage and live clean no drugs or alcohol, see a hepatologist and follow that doctors recommendations. It is up to him how he wants this to go.
I hope he choses to fight for his life, if not dying from liver disease can be a long protracted decline to eventual loss of life after many years in decline.
Sending my best to you. You sound like a good person I hope you find peace.
If he wants to live he has to help himself. That would be first getting treated for hep c and cured to stop the damage to his liver from hepatitis c.
He also has to stop self harm to his liver and drug or alcohol use. He still has time to live a longer life if he takes the actions that he needs to do.
Cirrhosis is ESLD end stage liver disease. ESLD does no mean end of life it means you have reached the highest levels of live damage at cirrhosis there is no higher level so "end stage". Patients are further divided by compensated ESLD those with less damaged livers that are able to perform the livers essential functions and decompensated ESLD where the liver is to badly damaged and can no longer cope with the normal work load of the liver and the system begins to break down.
People can live for many years with ESLD especially with care. I was diagnosed with cirrhosis or ESLD in Jan 2008 so 9.5 years ago and am still hanging in there.
To be honest if he wants to live he needs to be treated for hep c to stop that damage and live clean no drugs or alcohol, see a hepatologist and follow that doctors recommendations. It is up to him how he wants this to go.
I hope he choses to fight for his life, if not dying from liver disease can be a long protracted decline to eventual loss of life after many years in decline.
Sending my best to you. You sound like a good person I hope you find peace.
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