Aa
is it too late for treatment?
i am writing for my boyfriend.He has hepatitis c and has never been told what stage he is in.He is 58 yrs old and has had hep c for 30 years plus.He also has cancerous polyps in his liver and cirrhosis. They are considering a liver transplant(if hes accepted). Would the interferon treatment be helpful at this stage.thankyou kk430
Hector thank you once again for the knowledge. I have been reading everything I can get my eyes on but this is outstanding information.My boyfriend and I have a long distance relationship so Im not there to go to
appointments with him.He has his daughter.But I do know he has had alot of those pretransplant tests.He hasnt been in a coma and youd never know he was sick with anything.Im just collecting information to email him.
Also, I have Hep C as well but no symptoms yet as I contracted it in 2004.I want to know everything. Thank you KK
appointments with him.He has his daughter.But I do know he has had alot of those pretransplant tests.He hasnt been in a coma and youd never know he was sick with anything.Im just collecting information to email him.
Also, I have Hep C as well but no symptoms yet as I contracted it in 2004.I want to know everything. Thank you KK
Continued......
What is the waiting list?
The federal government created a national computerized network called UNOS (United Network of Organ Sharing) which regulates the distribution of all organs in the United States. All patients are listed according to a national point system and their blood type. The points are determined by the severity of the liver disease and the amount of time on the waiting list.
For more information about wait lists and transplants you can go to the UNOS website at www.UNOS.org
What is MELD?
The Model for End-Stage Liver Disease (MELD) is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill), used for liver transplant candidates age 12 and older. It gives each person a ‘score’ (number) based on how urgently he or she needs a liver transplant within the next three months. The number is calculated by a formula using three
routine lab test results:
Bilirubin, w • hich measures how effectively the liver excretes bile
• INR (prothrombin time), which measures the liver’s ability to make blood clotting factors
• Creatinine, which measures kidney function (Impaired kidney function is often associated
with severe liver disease.)
For additional information on MELD scoring you may go to www.UNOS.org
Factors affecting transplant wait time:
The time you must wait for a transplant depends on your MELD score, blood type, availability of suitable organs in our donation service area and your compliance to get new lab work done when requested.
The time spent waiting can be the most stressful phase of the transplant for both the patient and the caregivers because there is so much uncertainty. You could wait for several months or several years. We cannot predict how long you will have to wait for a suitable liver to become available. Remember, you may feel very bad and still have a low MELD score. The score is based on you lab work results only and does not always reflect how bad you feel.'
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Hector
What is the waiting list?
The federal government created a national computerized network called UNOS (United Network of Organ Sharing) which regulates the distribution of all organs in the United States. All patients are listed according to a national point system and their blood type. The points are determined by the severity of the liver disease and the amount of time on the waiting list.
For more information about wait lists and transplants you can go to the UNOS website at www.UNOS.org
What is MELD?
The Model for End-Stage Liver Disease (MELD) is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill), used for liver transplant candidates age 12 and older. It gives each person a ‘score’ (number) based on how urgently he or she needs a liver transplant within the next three months. The number is calculated by a formula using three
routine lab test results:
Bilirubin, w • hich measures how effectively the liver excretes bile
• INR (prothrombin time), which measures the liver’s ability to make blood clotting factors
• Creatinine, which measures kidney function (Impaired kidney function is often associated
with severe liver disease.)
For additional information on MELD scoring you may go to www.UNOS.org
Factors affecting transplant wait time:
The time you must wait for a transplant depends on your MELD score, blood type, availability of suitable organs in our donation service area and your compliance to get new lab work done when requested.
The time spent waiting can be the most stressful phase of the transplant for both the patient and the caregivers because there is so much uncertainty. You could wait for several months or several years. We cannot predict how long you will have to wait for a suitable liver to become available. Remember, you may feel very bad and still have a low MELD score. The score is based on you lab work results only and does not always reflect how bad you feel.'
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Hector
Here is an overview of the process to get listed for a Liver Transplant.
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'You have been referred for a liver transplant assessment because you’re experiencing some symptoms of liver failure.
The first visit to the transplant center will give you a chance to meet your Transplant Nurse Coordinator, a Transplant Surgeon, and the Transplant Clinic staff. It is a good time to have your questions about transplant and
your disease answered. Usually, the only thing we will have you do other than meet with us is have your blood drawn to determine your blood type, your liver and immune system function, and screens for infectious diseases, which will include Hepatitis and HIV. Occasionally, when you live a long distance away, we will schedule your first visit along with a full evaluation. This would take three to four days and is done for your convenience. At the end of your first visit, you will generally know if we will be proceeding with the liver transplant evaluation. We will arrange a series of appointments for you. The evaluation is primarily done on an outpatient basis, so you and your support people will need to stay locally for 3 to 4 days. During this time, you will meet several members of the Transplant Team as well as have some medical tests. Our staff will talk with you about your illness, and you will have the opportunity to ask the Liver Transplant Team more about the program at Transplant Center. Please discuss the dates you will be available to come for this evaluation during your first visit at the Transplant Center.
Pre-Transplant Evaluation
When you receive your appointment letter, you may be surprised by the number of exams scheduled. These tests are important because they help us learn more about your general health, as well as discover any potential
problems you may be facing. Since we have a very tight appointment schedule, it is very important that you be on time to and keep all of your appointments. The more appointments that you miss, reschedule or cancel, the longer it will be before we can place you on the transplant list. If you miss or cancel appointments repeatedly, this is a sign that you may not be fully committed to a liver transplant. You must be aware that the transplant committee weighs heavily your commitment towards a liver transplant. After you complete your examinations and we review the
results, we can determine if transplantation is an option for you.
You may have many of the following exams and consults:
The evaluation process is very tiring and can be especially confusing; therefore we expect that you be accompanied by someone for support. You will be given a great amount of information during this time, and it helps to have someone else to help remember what was said. It is mandatory to have your family member or caregiver with you during the social work consult.
• Chest x-• ray helps determine if your lungs and heart are healthy.
• Electrocardiogram (EKG or ECG) provides us an electrical rhythm of your heart.
• Cardiac stress test is a test where your heart rate is increased (by medicine or exercise) and shows how well your
heart works under stress.
• Echocardiogram is an ultrasound of your heart that will show how well your heart “pumps.”
• CT (CAT) scan is a computerized image showing the size and shape of your liver and major blood vessels.
• MRI (magnetic resonance imaging) also lets us see inside your abdomen to evaluate your liver and vessels.
• Pulmonary Function Tests (PFTs) are breathing tests which reveal how well your lungs are working.
• Upper Endoscopy is a scope which looks at your esophagus and your stomach.
• Colonoscopy is a scope which examines your rectum and colon.
• Liver biopsy is when a small piece of your liver is removed with a needle (not always performed).
• Extensive lab work including drug and alcohol screening.
• Dental consult to make sure any source of infection is cleared before transplant (this service may or may not be
covered by your insurance).
• Cardiologist consult to review all of your heart tests to make sure transplant surgery is safe for you.
• Social Work consult to determine if you and your family are ready for transplant.
• Psychiatric consult as needed or recommended by the Transplant Team.
• Dietary consult to help you plan for proper food choices and any dietary restrictions your disease may require.
Alcohol and Drugs
Alcohol and illegal drug use in persons with liver disease can cause further damage to the liver and is unhealthy. Because of this, we perform random drug and alcohol screening on ALL patients. If you test positive for alcohol
and/or illegal drugs, you will not be considered for a liver transplant evaluation until you are drug free for six months. If you are on the liver transplant waiting list and test positive for alcohol or illegal drugs, you will be placed on inactive status or removed from the liver transplant waiting list for six months and you will lose any time you have accumulated. You will be required to attend counseling for drug and alcohol abuse, and we will continue to perform random drug tests throughout the transplant process. If you are called to submit a random drug and alcohol screening, you will have 24 hours to complete the needed test, or it will be assumed it is positive and needed actions will be taken.
Results of Assessment
After the assessment, you will return home. The Transplant Team will review your test results and determine the risks and benefits of transplantation for you at a selection meeting. A decision will be made if this is the right time for your name to be placed on the waiting list or if recommendation for additional testing or information is needed
to make a decision. You will be informed of this decision within ten days of the committee meeting. Your referring physician will continue to monitor you and will receive the summary and outcome of your assessment. He or she will keep the Liver Transplant Team informed about your condition. Some patients are too well for transplant, and they will be reassessed if their condition changes. It is also possible to have medical problems, such as severe heart disease, large tumors, or significant obesity, which make transplantation too risky. If transplantation is recommended, you will have the final decision on whether your name is added to the waiting list.
How do I get on the transplant list?
After the committee has decided you are a good candidate your medical records will be sent to your insurance carrier for final approval. Once the insurance has consented to fund your transplant, you will be notified to have lab work drawn. Your lab results will determine your place on the transplant list.
hector
--------------------------------------------------------------------------
'You have been referred for a liver transplant assessment because you’re experiencing some symptoms of liver failure.
The first visit to the transplant center will give you a chance to meet your Transplant Nurse Coordinator, a Transplant Surgeon, and the Transplant Clinic staff. It is a good time to have your questions about transplant and
your disease answered. Usually, the only thing we will have you do other than meet with us is have your blood drawn to determine your blood type, your liver and immune system function, and screens for infectious diseases, which will include Hepatitis and HIV. Occasionally, when you live a long distance away, we will schedule your first visit along with a full evaluation. This would take three to four days and is done for your convenience. At the end of your first visit, you will generally know if we will be proceeding with the liver transplant evaluation. We will arrange a series of appointments for you. The evaluation is primarily done on an outpatient basis, so you and your support people will need to stay locally for 3 to 4 days. During this time, you will meet several members of the Transplant Team as well as have some medical tests. Our staff will talk with you about your illness, and you will have the opportunity to ask the Liver Transplant Team more about the program at Transplant Center. Please discuss the dates you will be available to come for this evaluation during your first visit at the Transplant Center.
Pre-Transplant Evaluation
When you receive your appointment letter, you may be surprised by the number of exams scheduled. These tests are important because they help us learn more about your general health, as well as discover any potential
problems you may be facing. Since we have a very tight appointment schedule, it is very important that you be on time to and keep all of your appointments. The more appointments that you miss, reschedule or cancel, the longer it will be before we can place you on the transplant list. If you miss or cancel appointments repeatedly, this is a sign that you may not be fully committed to a liver transplant. You must be aware that the transplant committee weighs heavily your commitment towards a liver transplant. After you complete your examinations and we review the
results, we can determine if transplantation is an option for you.
You may have many of the following exams and consults:
The evaluation process is very tiring and can be especially confusing; therefore we expect that you be accompanied by someone for support. You will be given a great amount of information during this time, and it helps to have someone else to help remember what was said. It is mandatory to have your family member or caregiver with you during the social work consult.
• Chest x-• ray helps determine if your lungs and heart are healthy.
• Electrocardiogram (EKG or ECG) provides us an electrical rhythm of your heart.
• Cardiac stress test is a test where your heart rate is increased (by medicine or exercise) and shows how well your
heart works under stress.
• Echocardiogram is an ultrasound of your heart that will show how well your heart “pumps.”
• CT (CAT) scan is a computerized image showing the size and shape of your liver and major blood vessels.
• MRI (magnetic resonance imaging) also lets us see inside your abdomen to evaluate your liver and vessels.
• Pulmonary Function Tests (PFTs) are breathing tests which reveal how well your lungs are working.
• Upper Endoscopy is a scope which looks at your esophagus and your stomach.
• Colonoscopy is a scope which examines your rectum and colon.
• Liver biopsy is when a small piece of your liver is removed with a needle (not always performed).
• Extensive lab work including drug and alcohol screening.
• Dental consult to make sure any source of infection is cleared before transplant (this service may or may not be
covered by your insurance).
• Cardiologist consult to review all of your heart tests to make sure transplant surgery is safe for you.
• Social Work consult to determine if you and your family are ready for transplant.
• Psychiatric consult as needed or recommended by the Transplant Team.
• Dietary consult to help you plan for proper food choices and any dietary restrictions your disease may require.
Alcohol and Drugs
Alcohol and illegal drug use in persons with liver disease can cause further damage to the liver and is unhealthy. Because of this, we perform random drug and alcohol screening on ALL patients. If you test positive for alcohol
and/or illegal drugs, you will not be considered for a liver transplant evaluation until you are drug free for six months. If you are on the liver transplant waiting list and test positive for alcohol or illegal drugs, you will be placed on inactive status or removed from the liver transplant waiting list for six months and you will lose any time you have accumulated. You will be required to attend counseling for drug and alcohol abuse, and we will continue to perform random drug tests throughout the transplant process. If you are called to submit a random drug and alcohol screening, you will have 24 hours to complete the needed test, or it will be assumed it is positive and needed actions will be taken.
Results of Assessment
After the assessment, you will return home. The Transplant Team will review your test results and determine the risks and benefits of transplantation for you at a selection meeting. A decision will be made if this is the right time for your name to be placed on the waiting list or if recommendation for additional testing or information is needed
to make a decision. You will be informed of this decision within ten days of the committee meeting. Your referring physician will continue to monitor you and will receive the summary and outcome of your assessment. He or she will keep the Liver Transplant Team informed about your condition. Some patients are too well for transplant, and they will be reassessed if their condition changes. It is also possible to have medical problems, such as severe heart disease, large tumors, or significant obesity, which make transplantation too risky. If transplantation is recommended, you will have the final decision on whether your name is added to the waiting list.
How do I get on the transplant list?
After the committee has decided you are a good candidate your medical records will be sent to your insurance carrier for final approval. Once the insurance has consented to fund your transplant, you will be notified to have lab work drawn. Your lab results will determine your place on the transplant list.
hector
This is the most Ive found out in a long time Hector thank you so much.I know that he has fluid retention and that the polyps are inside the liver but I will have him try to get the other information.Within the next two weeks he will find out whether he is considered for transplant.
Hello. Thank you for writing and posting your questions.
I would need some more information in order to give you good advice geared toward your boyfriend's condition so here are some questions I have.
Questions:
--------------------------------------------------------------------------------------------
You say your boyfriend has cirrhosis. There are 3 stages of cirrhosis.
How severe is his cirrhosis? Do you know his MELD score?
Does he have complications from his cirrhosis such as....
* Ascites - fluid retention in his abdomen.
* Hepatic Encephalopathy - Poor concentration, poor memory, changes and strange behaviors. Has he ever gone into a coma?
* Varices - has he ever vomited or defecated large amounts of blood requiring hospitalization.
You say he has 'cancerous polyps'. Do you mean he has primary liver cancer also known as HCC (hepatocellular carcinoma)?
Is he being considered for transplant because of his liver disease or cancer?
Has he received MELD cancer exception points for his liver cancer or is he now being evaluated to be listed for transplant?
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The hepatologist is the one to ask about treating his hepatitis C as the doctor is aware of your boyfriend actual liver status and overall health.
Basically just to let you know that your boyfriend's hepatitis C is a minor issue now that he has cancer. Unless his liver disease is so advanced that he is being hospitalized on a regular basis for life-threatening complications of his liver disease, even his liver disease should not be his primary concern. The greatest danger to him is his liver cancer. Liver cancer is a very deadly cancer and if too many tumors develop or the cancer spreads outside the liver then any patient who is listed for transplant will be taken off the transplant list as there is no chance they will survive even with a transplant. That is the main issue. For him to get listed and get a transplant as soon as he is able before the cancer becomes unmanageable. I don't say this to scare you but this is the reality and you will learn this is the case sooner or later. The sooner you know the sooner you can understand what is at stake and you can plan accordingly. His doctor should really explain all this to both of you. So worrying about hepatitis C is not something to spend time thinking about really unless the doctor decides to treat the hep C. With liver cancer the main focus for the patient is staying alive until they can receive a life saving transplant. That is plenty to handle believe me. Fighting cancer is a daily battle and is all consuming.
Talk to his doctor he is the only one qualified to help your boyfriend at this stage of illness. He is about to go through a life changing experience that nobody is prepared for. Try to support him through the ups and downs and learn all you can about liver disease and transplant. It is a very difficult process but it is the only thing that can save his life if he has liver cancer. The transplant center should have materials for both you and your boyfriend to learn about what will be happening before, during and after transplant.
**** I also have cirrhosis and liver cancer and am waiting for a transplant in the next 6-9 months in hopes of saving my life. So I am writing about my own experiences with hepatitis C, cirrhosis and liver cancer. ****
Best of luck to you both!
Hang in there!
Hector
I would need some more information in order to give you good advice geared toward your boyfriend's condition so here are some questions I have.
Questions:
--------------------------------------------------------------------------------------------
You say your boyfriend has cirrhosis. There are 3 stages of cirrhosis.
How severe is his cirrhosis? Do you know his MELD score?
Does he have complications from his cirrhosis such as....
* Ascites - fluid retention in his abdomen.
* Hepatic Encephalopathy - Poor concentration, poor memory, changes and strange behaviors. Has he ever gone into a coma?
* Varices - has he ever vomited or defecated large amounts of blood requiring hospitalization.
You say he has 'cancerous polyps'. Do you mean he has primary liver cancer also known as HCC (hepatocellular carcinoma)?
Is he being considered for transplant because of his liver disease or cancer?
Has he received MELD cancer exception points for his liver cancer or is he now being evaluated to be listed for transplant?
--------------------------------------------------------------------------------------------------
The hepatologist is the one to ask about treating his hepatitis C as the doctor is aware of your boyfriend actual liver status and overall health.
Basically just to let you know that your boyfriend's hepatitis C is a minor issue now that he has cancer. Unless his liver disease is so advanced that he is being hospitalized on a regular basis for life-threatening complications of his liver disease, even his liver disease should not be his primary concern. The greatest danger to him is his liver cancer. Liver cancer is a very deadly cancer and if too many tumors develop or the cancer spreads outside the liver then any patient who is listed for transplant will be taken off the transplant list as there is no chance they will survive even with a transplant. That is the main issue. For him to get listed and get a transplant as soon as he is able before the cancer becomes unmanageable. I don't say this to scare you but this is the reality and you will learn this is the case sooner or later. The sooner you know the sooner you can understand what is at stake and you can plan accordingly. His doctor should really explain all this to both of you. So worrying about hepatitis C is not something to spend time thinking about really unless the doctor decides to treat the hep C. With liver cancer the main focus for the patient is staying alive until they can receive a life saving transplant. That is plenty to handle believe me. Fighting cancer is a daily battle and is all consuming.
Talk to his doctor he is the only one qualified to help your boyfriend at this stage of illness. He is about to go through a life changing experience that nobody is prepared for. Try to support him through the ups and downs and learn all you can about liver disease and transplant. It is a very difficult process but it is the only thing that can save his life if he has liver cancer. The transplant center should have materials for both you and your boyfriend to learn about what will be happening before, during and after transplant.
**** I also have cirrhosis and liver cancer and am waiting for a transplant in the next 6-9 months in hopes of saving my life. So I am writing about my own experiences with hepatitis C, cirrhosis and liver cancer. ****
Best of luck to you both!
Hang in there!
Hector
Hi. I am very sorry for you and your boyfriend. What does the Doctor say about Hep. C treatment at this stage? I think he or she is the only one who can answer that question.
Apart from that you might try a personal message to HectorSF on this forum as he can inform you on the ins and outs of this journey.
Keep us informed. I wish you both all the best
Apart from that you might try a personal message to HectorSF on this forum as he can inform you on the ins and outs of this journey.
Keep us informed. I wish you both all the best
Well you have already answered what stage he is, being he's cirrhotic then its stage 4. Maybe your talking about his genotype? If he's being considered for a liver TP then he must be seeing a hepaologist at a transplant center, only they would know if he's stable enough to do treatment. Chances are that he would be, if so he would need to be watched carefully. Again only by a hepatologist... Best to you both.
BTW, Hector thats a member here should be by and can help guide you along.
BTW, Hector thats a member here should be by and can help guide you along.
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We will help you both through the process.
There is a lot to learn and it is a steep learning curve but in time you will become an expert. So don't worry. Like anything new practice makes perfect.
You may want to bring a writing pad or laptop with questions when you see the doctors. In the heat of the moment we tend to forget our questions or the answers the doctors give so it is always a good idea to write everything done.
If the doctor mentions something you don't understand as him/her to explain it in terms you understand. You can always ask questions here too but your boyfriends docs are the one with the answers that are particular to your boyfriend's exact condition which we can only generalize about.
Another very important thing. Your boyfriend should make it absolutely clear that he wants a transplant and will do everything he is asked to do to get a transplant. Attitude counts for a lot. It is the patients with the will to live and go through hell if they must in order to get a transplant that have the best outcomes. If will influence the committee that decides if he should be listed. Sometimes it can even override of negative factors (health issues, history of drug abuse, etc.) when they make their decision. Be positive, eager and willing to be compliant with everything the transplant center wants.
Good luck in getting listed!!!
Hector