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Cirrohis and my son
Hello, My son is 36 and is in end stage Liver Failure. He was homeless for 6 years after many attempts at Rehab and sober living, we finally had to practice tough love. However, now I cannot turn my back on him. He is at our home now. It is scary to leave him but no money or ins and can;t afford to quit work to stay home. We are trying to figure out what to do. He needs to me monitored. He is so weak and fatigued. His belly is very swollen but still soft. He is jaundiced and he is not the same person. Repeatedly ask him not to smoke in our house and he does all night long. May have to take them away or risk losing him and our home to fire. Can;'t get him to shower either. Is this all typical at end stage? We have been to a county Dr. and trying to get him better care. Going to apply for SSI and Medi-Cal for him. I am nervous all the time and don't know when time to take him to a hospital.
Thank you for listening
Thank you for listening
For me the choice to DRInk wasn't a choice...I am a recovering alcholicwith stage two chirosis.. and hep c...I continued to drink even though I knew it would kill me...I stopped in time lots can't...take your son to count hospitals or teaching hospitals see if you can locate any home services...the resources are out there its just a lot of work to get them....you are a mother who loves her son ....I would check out alcoholic anonymous and ala non as well..BLESS YOU
What a good mom. You've heard from the best answerers. I will offer my thoughts and prayers to you tonight. I know you love your son and this is painful for you. Please take care of yourself as well.
xo Karen:)
xo Karen:)
COMMUNITY LEADER
Hello Kat and welcome to MedHelp.
I am very sorry to hear about your sons condition. The symptoms you describe " His belly is very swollen but still soft. He is jaundiced and he is not the same person" are symptoms of decompensated liver cirrhosis, Ascites, Jaundice and possibly Hepatic Encephalopathy (HE).
Let me explain to you how liver disease works, the short version.. Everything we ingest kills off liver cells but this is okay because this is how the liver works and it has an amazing ability to heal itself. Problem is when we abuse alcohol it kills off massive amounts of liver cells and the liver cannot produce new ones quick enough so scar tissue begins to form. We first call this fibrosis and in more severe cases cirrhosis. I cannot stress to you enough how important it is for your son to maintain his sobriety for the rest of his life with no exceptions. Otherwise his disease will continue to advance. Remove the cause and the liver can begin to heal, how much it can heal is unpredictable.
As everyone has pointed out it is very sad your son is so young with advanced liver disease. At the time of my diagnosis I was 38. I was diagnosed with alcoholic cirrhosis 3 years ago. I had symptoms of decompensation just as your son does, jaundice, ascites and HE. Today I am no longer jaundice and treat my remaining symptoms. My liver function test have greatly improved. Though managing my health is not always easy my quality of life has never been better. I hope your son can also find this also.
Please keep in mind we are not doctors but we speak from our personal experiences and what we have learned, none of us is qualified to give your son's prognosis only his doctor can do that. His medical treatment and sobriety are critical to his survival. You are on the right track to finding him the help that he needs. I wish you all the best, take care.
Randy
I am very sorry to hear about your sons condition. The symptoms you describe " His belly is very swollen but still soft. He is jaundiced and he is not the same person" are symptoms of decompensated liver cirrhosis, Ascites, Jaundice and possibly Hepatic Encephalopathy (HE).
Let me explain to you how liver disease works, the short version.. Everything we ingest kills off liver cells but this is okay because this is how the liver works and it has an amazing ability to heal itself. Problem is when we abuse alcohol it kills off massive amounts of liver cells and the liver cannot produce new ones quick enough so scar tissue begins to form. We first call this fibrosis and in more severe cases cirrhosis. I cannot stress to you enough how important it is for your son to maintain his sobriety for the rest of his life with no exceptions. Otherwise his disease will continue to advance. Remove the cause and the liver can begin to heal, how much it can heal is unpredictable.
As everyone has pointed out it is very sad your son is so young with advanced liver disease. At the time of my diagnosis I was 38. I was diagnosed with alcoholic cirrhosis 3 years ago. I had symptoms of decompensation just as your son does, jaundice, ascites and HE. Today I am no longer jaundice and treat my remaining symptoms. My liver function test have greatly improved. Though managing my health is not always easy my quality of life has never been better. I hope your son can also find this also.
Please keep in mind we are not doctors but we speak from our personal experiences and what we have learned, none of us is qualified to give your son's prognosis only his doctor can do that. His medical treatment and sobriety are critical to his survival. You are on the right track to finding him the help that he needs. I wish you all the best, take care.
Randy
Hi I am so sorry for your pain, I think what you are saying is that you can't stay home from work to take care of your son. So...he is there alone and you are afraid he is going to burn your home down.
You want to get help for him through Social Security, etc
My husband applied for disability SS and just made it. The judge said that you have to have worked in the past 3 years and you have to have enough quarters to qualify for SS disability.
I may be completely wrong, maybe there is another segment of SS that you are talking about. In order to apply for social security there will need to be doctors who can say how sick he is. There are many many forms. We had to hire Binder and Binder to help us. He will have to write down his day, what he does from hour to hour. Social Security, many times, will turn a person down the first time. It took us 18 months to get approved. SS turned him down but a judge over rode the decision to help.
I think that Hector may be right about the way your son is acting...like a drug addict.
How do you know that he has end stage liver disease? I mean Hector has it and cancer; he is on this board every day helping others all the time. 36 is very very young to have end stage liver disease.
Is it possible that he has let you think he is very sick so that he can come back in to your home?
Again I am so sorry for your pain. I do not know what I would do if I were in your circumstance. On the one hand he is your son, you love him, however he is not doing anything to help himself. He is waiting for you to do it
I hope you can find help...a solution.
You want to get help for him through Social Security, etc
My husband applied for disability SS and just made it. The judge said that you have to have worked in the past 3 years and you have to have enough quarters to qualify for SS disability.
I may be completely wrong, maybe there is another segment of SS that you are talking about. In order to apply for social security there will need to be doctors who can say how sick he is. There are many many forms. We had to hire Binder and Binder to help us. He will have to write down his day, what he does from hour to hour. Social Security, many times, will turn a person down the first time. It took us 18 months to get approved. SS turned him down but a judge over rode the decision to help.
I think that Hector may be right about the way your son is acting...like a drug addict.
How do you know that he has end stage liver disease? I mean Hector has it and cancer; he is on this board every day helping others all the time. 36 is very very young to have end stage liver disease.
Is it possible that he has let you think he is very sick so that he can come back in to your home?
Again I am so sorry for your pain. I do not know what I would do if I were in your circumstance. On the one hand he is your son, you love him, however he is not doing anything to help himself. He is waiting for you to do it
I hope you can find help...a solution.
COMMUNITY LEADER
I am sorry this is happening to your son. The issue is unfortunately only your son can save his own life. And he doesn't seem to want to live.
As long as he smokes he will not be listed for a liver transplant. Your son is very young for someone with advanced liver disease. Do you know what caused his liver disease? Is he abusing drugs or alcohol? Usually it is one or both. He will have to stop the drug use if he wants to live and get a transplant. And he will have to do what the doctor tell him to do. Drugs and alcohol are toxic to the liver and will cause his disease to progress more rapidly then in people that don't abuse substances, The only doctors that can help someone in his condition is a liver transplant center. They are usually located in large cities in teaching hospitals. No one else can help someone with such advanced liver disease and he needs specialist care at this point. Since you are in California LA and San Francisco are where the transplant centers are located.
Unfortunately since your son is working by definition he is not disabled and therefore is not qualified for SSI.
WHO IS ELIGIBLE FOR SSI?
Anyone who is:
(age 65 or older);
blind; or
disabled.
And, who:
has limited income; and
has limited resources
WHAT DOES “DISABLED” MEAN FOR AN ADULT?
If you are age 18 or older we may consider you “disabled” if you have a medically determinable physical or mental impairment (including an emotional or learning problem) which:
results in the inability to do any substantial gainful activity; and
can be expected to result in death; or
has lasted or can be expected to last for a continuous period of not less than 12 months.
SSA has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. The Compassionate Allowances (CAL) initiative allows Social Security to target the most obviously disabled individuals for claims approval based on objective medical information that we can obtain quickly. Fifty medical conditions were initially selected for this initiative. Since that time we have added 150 additional conditions bringing the total number of conditions to 200. The list may expand over time. A complete list of CAL conditions may be viewed online at: http://www.socialsecurity.gov/compassionateallowances/conditions.htm.
He should either stop working and say he is disabled or he should sign up with "Covered California" to get health insurance or Medi-Cal starting January 1, 2014.
http://www.coveredca.com/
Covered California will help you find out if you are eligible for the sliding scale financial assistance that helps to reduce your health care costs. If your income is very limited, you may be eligible for free coverage through Medi-Cal.
Do I have to buy health insurance?
If you don't have health insurance, you should. Health insurance is an important way to make sure we have access to medical care when we need it. Starting in January 2014, most people will be required to have health insurance or pay a penalty if they don't. Coverage can include employer-provided insurance, coverage you buy on your own, Medicare or Medi-Cal.
The penalty phases in over three years and becomes increasingly severe. In 2014, the penalty will be 1 percent of annual income or $95, whichever is greater. By 2016, the penalty will be 2.5 percent of income or $695. This means that if you do not have coverage in 2014, you will be required to pay a penalty when you file your taxes at the end of the year.
"Repeatedly ask him not to smoke in our house and he does all night long. May have to take them away or risk losing him and our home to fire. Can;'t get him to shower either. Is this all typical at end stage? "
This is typical behavior of a drug abuser and has nothing to do with his liver disease.
"I am nervous all the time and don't know when time to take him to a hospital."
Some complications of cirrhosis are the need to have fluid drained from his abdomen as he should be on a low sodium diet and taking diuretics.
He may vomit or defecate blood. This can lead to massive blood lose.
He can become comatose from hepatic encephalopathy and will require ER care.
Any one of these and many others life-threatening complications are the results of advanced cirrhosis of the liver which your son has. Unfortunately it appears he may need a liver transplant to remain alive in the next few years in order to stay alive. Since he doesn't appear to care if he lives or dies his chances are not good.
You should be prepared for what is coming.
Best of luck to you.
Hector
As long as he smokes he will not be listed for a liver transplant. Your son is very young for someone with advanced liver disease. Do you know what caused his liver disease? Is he abusing drugs or alcohol? Usually it is one or both. He will have to stop the drug use if he wants to live and get a transplant. And he will have to do what the doctor tell him to do. Drugs and alcohol are toxic to the liver and will cause his disease to progress more rapidly then in people that don't abuse substances, The only doctors that can help someone in his condition is a liver transplant center. They are usually located in large cities in teaching hospitals. No one else can help someone with such advanced liver disease and he needs specialist care at this point. Since you are in California LA and San Francisco are where the transplant centers are located.
Unfortunately since your son is working by definition he is not disabled and therefore is not qualified for SSI.
WHO IS ELIGIBLE FOR SSI?
Anyone who is:
(age 65 or older);
blind; or
disabled.
And, who:
has limited income; and
has limited resources
WHAT DOES “DISABLED” MEAN FOR AN ADULT?
If you are age 18 or older we may consider you “disabled” if you have a medically determinable physical or mental impairment (including an emotional or learning problem) which:
results in the inability to do any substantial gainful activity; and
can be expected to result in death; or
has lasted or can be expected to last for a continuous period of not less than 12 months.
SSA has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. The Compassionate Allowances (CAL) initiative allows Social Security to target the most obviously disabled individuals for claims approval based on objective medical information that we can obtain quickly. Fifty medical conditions were initially selected for this initiative. Since that time we have added 150 additional conditions bringing the total number of conditions to 200. The list may expand over time. A complete list of CAL conditions may be viewed online at: http://www.socialsecurity.gov/compassionateallowances/conditions.htm.
He should either stop working and say he is disabled or he should sign up with "Covered California" to get health insurance or Medi-Cal starting January 1, 2014.
http://www.coveredca.com/
Covered California will help you find out if you are eligible for the sliding scale financial assistance that helps to reduce your health care costs. If your income is very limited, you may be eligible for free coverage through Medi-Cal.
Do I have to buy health insurance?
If you don't have health insurance, you should. Health insurance is an important way to make sure we have access to medical care when we need it. Starting in January 2014, most people will be required to have health insurance or pay a penalty if they don't. Coverage can include employer-provided insurance, coverage you buy on your own, Medicare or Medi-Cal.
The penalty phases in over three years and becomes increasingly severe. In 2014, the penalty will be 1 percent of annual income or $95, whichever is greater. By 2016, the penalty will be 2.5 percent of income or $695. This means that if you do not have coverage in 2014, you will be required to pay a penalty when you file your taxes at the end of the year.
"Repeatedly ask him not to smoke in our house and he does all night long. May have to take them away or risk losing him and our home to fire. Can;'t get him to shower either. Is this all typical at end stage? "
This is typical behavior of a drug abuser and has nothing to do with his liver disease.
"I am nervous all the time and don't know when time to take him to a hospital."
Some complications of cirrhosis are the need to have fluid drained from his abdomen as he should be on a low sodium diet and taking diuretics.
He may vomit or defecate blood. This can lead to massive blood lose.
He can become comatose from hepatic encephalopathy and will require ER care.
Any one of these and many others life-threatening complications are the results of advanced cirrhosis of the liver which your son has. Unfortunately it appears he may need a liver transplant to remain alive in the next few years in order to stay alive. Since he doesn't appear to care if he lives or dies his chances are not good.
You should be prepared for what is coming.
Best of luck to you.
Hector
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