Aa
on my third Dr.
I changed Dr.s and my new Dr after reviewing my labs has refered me to Baylor college of Medicene. I am what they are calling a super responder because my viral load went from 768,000 to less than 43 in the first 2 weeks of treatment. This was very good news but then what the first Dr. thought was 2 false positive one was for auto immune hepatitis and the other was for primary billy cirrosis. My new dr. refered me to Baylor because he felt I should be under the care of someone who is specialized in the field and would be better diagnosing and treating a multi symptom liver diseases and after seeing the Dr. at Baylor they found out the test results are not false. So she started me on a bile thinner that I will be on for the rest of my life. She will also keep a close watch on the auto immune hep as long as my labs stay normal she will continue the tx for the hep c. My first dr. did not explain to me very well about my cirrosis I thought she said stage 2 but my new dr. explained it in a lot more detail that I actualy my liver biopsy should that I have stage 4 cirrosis and if all goes well with the tx of the hep c and later the tx for the auto immune and the bile medicine and following my new diet my liver should last me about 15 years before I will need a transplant. I am staying very positve about all of this and feel that I am with the right dr. and have a great support team with my family. My question is has anyone else had the same or similar diagnose and what was the out come. Thanks Mia
Mia,
It is all overwhelming at first. Just take to slow. In time you will learn more about the liver and liver disease then you can ever imagine.
I am sorry you have seen only the worst side of liver disease. Progress is been made every year, so knowledge and treatments will continue to get better and better.
At our liver transplant support group (yes I am listed at 2 transplant centers) I see all kinds of people with various types of liver disease. There are some common symptoms we all have and there are things that are particular to the particular cause of the liver disease. It is a great group. I must say I have learned more from this group then all the reading I have done. When you see someone who looks more dead then alive one week and then they get a transplant I sometimes don't even recognize them at first. The difference is that dramatic. And I have seen dozens come back from the edge to have a second chance at life. I never use the word "miracle" but it is truly amazing. The medical expertise at my local transplant center is world-class and their caring and compassion is truly amazing. Two of my friends are alive today despite huge odds against them because of the care they received. I can't imagine my life without them. I am grateful everyday we are together. Although it might sound depressing to some, it actually is one of the most uplifting experiences I have ever had. Yes, there are meetings where we all are crying but most weeks we make jokes about the disease, our symptoms and our universal hatred of lactulose. ;-)
This disease can be a real roller coaster. One day your up the next is another life threatening crises. But in time you learn to pick yourself up and keep fighting to live another day. What else can we do? Give up? No way! Yes it is emotional for those needing a transplant to live. So much of ESLD is keeping your head together. Which is not always easy. All we can do is do the best we can. No one is perfect.
ESLD is a worse case outcome of hepatitis C. Luckily most people with hep C never progress to cirrhosis. And with the new meds about to come out, more people will be able to be cured before their livers becomes cirrhotic.
14 tubes of blood is a typical full blood workup to assessment of your health. They will look at all the tests to determine your MELD score. Look at the AFP marker for liver cancer, look at your platelet count, electrolytes, antibodies, ALT, AST, ferritin etc. All are useful for assessing the health of your liver. Blood draws to monitor advanced liver disease is part of the routine to track illness. There are done periodically from pre to post transplant. It is a life-long requirement to continually monitor the liver. By this point both of my arms are shot, so now they are using my wrists and hands at this point. My good post transplant friend says.."Wait tell they start using your feet!". Gee I can't wait. And I am needle phobic! I don't recommend mixing cirrhosis and needle needle phobia. Actually I don't recommend cirrhosis to anyone. But then again there are many worse things. So it is all about how you choose to perceive it. I've had cancer too recently. I prefer liver disease. If "prefer" is the correct word.
Best of luck with everything! Keep your head up.
Waiting to hear good news when you get the results. Ask for a copy of the report. It should be 3-4 pages long. That way we can go over all the results with the exact data. Not just high and low or good and bad.
Hectorsf
It is all overwhelming at first. Just take to slow. In time you will learn more about the liver and liver disease then you can ever imagine.
I am sorry you have seen only the worst side of liver disease. Progress is been made every year, so knowledge and treatments will continue to get better and better.
At our liver transplant support group (yes I am listed at 2 transplant centers) I see all kinds of people with various types of liver disease. There are some common symptoms we all have and there are things that are particular to the particular cause of the liver disease. It is a great group. I must say I have learned more from this group then all the reading I have done. When you see someone who looks more dead then alive one week and then they get a transplant I sometimes don't even recognize them at first. The difference is that dramatic. And I have seen dozens come back from the edge to have a second chance at life. I never use the word "miracle" but it is truly amazing. The medical expertise at my local transplant center is world-class and their caring and compassion is truly amazing. Two of my friends are alive today despite huge odds against them because of the care they received. I can't imagine my life without them. I am grateful everyday we are together. Although it might sound depressing to some, it actually is one of the most uplifting experiences I have ever had. Yes, there are meetings where we all are crying but most weeks we make jokes about the disease, our symptoms and our universal hatred of lactulose. ;-)
This disease can be a real roller coaster. One day your up the next is another life threatening crises. But in time you learn to pick yourself up and keep fighting to live another day. What else can we do? Give up? No way! Yes it is emotional for those needing a transplant to live. So much of ESLD is keeping your head together. Which is not always easy. All we can do is do the best we can. No one is perfect.
ESLD is a worse case outcome of hepatitis C. Luckily most people with hep C never progress to cirrhosis. And with the new meds about to come out, more people will be able to be cured before their livers becomes cirrhotic.
14 tubes of blood is a typical full blood workup to assessment of your health. They will look at all the tests to determine your MELD score. Look at the AFP marker for liver cancer, look at your platelet count, electrolytes, antibodies, ALT, AST, ferritin etc. All are useful for assessing the health of your liver. Blood draws to monitor advanced liver disease is part of the routine to track illness. There are done periodically from pre to post transplant. It is a life-long requirement to continually monitor the liver. By this point both of my arms are shot, so now they are using my wrists and hands at this point. My good post transplant friend says.."Wait tell they start using your feet!". Gee I can't wait. And I am needle phobic! I don't recommend mixing cirrhosis and needle needle phobia. Actually I don't recommend cirrhosis to anyone. But then again there are many worse things. So it is all about how you choose to perceive it. I've had cancer too recently. I prefer liver disease. If "prefer" is the correct word.
Best of luck with everything! Keep your head up.
Waiting to hear good news when you get the results. Ask for a copy of the report. It should be 3-4 pages long. That way we can go over all the results with the exact data. Not just high and low or good and bad.
Hectorsf
I think I will start with the link for Hep C first and work my way through the other links. Trying not to overwhelm myself. I have received a lot of information from the Dr. and still processing all of it. It will be good for some late night reading on the weekends.
You are fortunate to have friends that are survivors. I myself have seen only the worst of this disease. I have buried two ex-husbands and my best friend that have past from cirrosis caused by HCV. I believe this is where my positiveness comes from because I am positivly determined to do everything right for my overall health. I believe the human brain is our motherboard and we upload data that is essential for our bodies to heal themselves.
If I tell myself that my body is healing, and getting stronger everyday and that everything I consume, be it nutrition, or knowledge, or spritualness even my medications that I take everyday. My health will improve.
Have you seen the movie "The Secret"?
I just want to say thank you for responding to my post. I means alot to me.
Are you waiting on a transplant you mentions that you are in a support group?
BCM took 14 tubes of blood from me on the first visit and I will have the results on the 31st, my next appt. So I will post again after that.
Thanks again,
Keep on Sailing
Mia
You are fortunate to have friends that are survivors. I myself have seen only the worst of this disease. I have buried two ex-husbands and my best friend that have past from cirrosis caused by HCV. I believe this is where my positiveness comes from because I am positivly determined to do everything right for my overall health. I believe the human brain is our motherboard and we upload data that is essential for our bodies to heal themselves.
If I tell myself that my body is healing, and getting stronger everyday and that everything I consume, be it nutrition, or knowledge, or spritualness even my medications that I take everyday. My health will improve.
Have you seen the movie "The Secret"?
I just want to say thank you for responding to my post. I means alot to me.
Are you waiting on a transplant you mentions that you are in a support group?
BCM took 14 tubes of blood from me on the first visit and I will have the results on the 31st, my next appt. So I will post again after that.
Thanks again,
Keep on Sailing
Mia
Hi Mia,
It sounds like you are in the right place getting the right treatment. Congratulations. That is a critical step. You deserve the best healthcare you can get and it looks like you have found it. For anybody with advanced liver disease caused by any illness or condition it is important to be treated by a hepatologist at a liver transplant hospital as these doctors work with people with liver disease and other complications of liver disease on a daily basis. Gastros (although I love mine) should refer their patients with advance disease to a nearby transplant center as yours and mine have done.
I have met a number of women with PBC at the transplant support group I am a member of they were all post transplant patients but unfortunately I know only the basics of the disease.
If your viral load become UND by 4 weeks you have very high odds of SVR so that is excellent news. If you can clear your liver of hepatitis C that will surely relieve your liver from all the assaults it is taking.
PBC is a disease where the bile ducts are slowly destroyed. This can cause a harmful build up of substances in the liver that can in time cause cirrhosis. By the way PBC is is considered an autoimmune disease by many doctors although there may be other factors involved also.
Here is a link to AASLD’s Practice Guidelines for PBC. It is written for a doctor but as you learn more about your illness it will all make sense to you. Plenty of late night reading for you so you can understand your illness. :-)
AASLD is the leading organization of scientists and healthcare professionals committed to preventing and curing liver disease. AASLD has grown to an international society responsible for all aspects of hepatology,
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/PrimaryBillaryCirrhosis7-2009.pdf
Autoimmune hepatitis is caused by the body’s immune system attacking the liver. It can at times be controlled with drugs to suppress the immune system.
Here is a link to AASLD’s Practice Guideline for Autoimmune hepatitis.
http://www.aasld.org/practiceguidelines/Documents/AIH2010.pdf
Last but not least…the Practice Guidelines for Hepatitis C
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Diagnosis_of_HEP_C_Update.Aug%20_09pdf.pdf
No one can say how long your liver may last. Each individual is different but if your doctors feels if found and diagnosed early enough they can reduce the damage of time. The good thing is that liver diseases are slow moving and take many decades to destroy the liver. Except for Fulminant liver failure, where the liver just fails within a period of weeks or months.
You should feel positive. Take it one step at a time. Right now you are battling HCV. You will also be adjusting your life to minimize the impact of PBC and autoimmune hepatitis. You are doing everything you should to manage your health and it appears you have a good medical team supporting you. All this is so important. What happens with our liver we have very little control over. We do our best to follow current best practices and are compliant with our meds. What we do have control over is our attitude. This will be a very valuable life lesson. It will teach you how to appreciate every day we are not in the hospital and suffering as so many others are. You will see the glass as half full instead of have empty. Negative thinking accomplishes nothing. We have enough to deal with without adding more negativity to the situation. I can tell you that I have friends that should not be here today. They were only hours from death. They got transplants and know have a second chance at life. We are so luck not to be in the position at least for now so even on bad days I know things could be a lot worse.
Best of luck! Hang in there.
Let us know how your Hep C treatment goes.
Hectorsf
It sounds like you are in the right place getting the right treatment. Congratulations. That is a critical step. You deserve the best healthcare you can get and it looks like you have found it. For anybody with advanced liver disease caused by any illness or condition it is important to be treated by a hepatologist at a liver transplant hospital as these doctors work with people with liver disease and other complications of liver disease on a daily basis. Gastros (although I love mine) should refer their patients with advance disease to a nearby transplant center as yours and mine have done.
I have met a number of women with PBC at the transplant support group I am a member of they were all post transplant patients but unfortunately I know only the basics of the disease.
If your viral load become UND by 4 weeks you have very high odds of SVR so that is excellent news. If you can clear your liver of hepatitis C that will surely relieve your liver from all the assaults it is taking.
PBC is a disease where the bile ducts are slowly destroyed. This can cause a harmful build up of substances in the liver that can in time cause cirrhosis. By the way PBC is is considered an autoimmune disease by many doctors although there may be other factors involved also.
Here is a link to AASLD’s Practice Guidelines for PBC. It is written for a doctor but as you learn more about your illness it will all make sense to you. Plenty of late night reading for you so you can understand your illness. :-)
AASLD is the leading organization of scientists and healthcare professionals committed to preventing and curing liver disease. AASLD has grown to an international society responsible for all aspects of hepatology,
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/PrimaryBillaryCirrhosis7-2009.pdf
Autoimmune hepatitis is caused by the body’s immune system attacking the liver. It can at times be controlled with drugs to suppress the immune system.
Here is a link to AASLD’s Practice Guideline for Autoimmune hepatitis.
http://www.aasld.org/practiceguidelines/Documents/AIH2010.pdf
Last but not least…the Practice Guidelines for Hepatitis C
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Diagnosis_of_HEP_C_Update.Aug%20_09pdf.pdf
No one can say how long your liver may last. Each individual is different but if your doctors feels if found and diagnosed early enough they can reduce the damage of time. The good thing is that liver diseases are slow moving and take many decades to destroy the liver. Except for Fulminant liver failure, where the liver just fails within a period of weeks or months.
You should feel positive. Take it one step at a time. Right now you are battling HCV. You will also be adjusting your life to minimize the impact of PBC and autoimmune hepatitis. You are doing everything you should to manage your health and it appears you have a good medical team supporting you. All this is so important. What happens with our liver we have very little control over. We do our best to follow current best practices and are compliant with our meds. What we do have control over is our attitude. This will be a very valuable life lesson. It will teach you how to appreciate every day we are not in the hospital and suffering as so many others are. You will see the glass as half full instead of have empty. Negative thinking accomplishes nothing. We have enough to deal with without adding more negativity to the situation. I can tell you that I have friends that should not be here today. They were only hours from death. They got transplants and know have a second chance at life. We are so luck not to be in the position at least for now so even on bad days I know things could be a lot worse.
Best of luck! Hang in there.
Let us know how your Hep C treatment goes.
Hectorsf
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