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25 y/o Male and Diagnosed with Stage 3/early Stage 4 Bridging Fibrosis.
Hello,
I too am new here and would appreciate any feedback! I am a 25 year old, 6'2, 210 pound guy who was just recently diagnosed with stage 3, early stage 4 Bridging Fibrosis/Cirrhosis after recently moving across the country for a new job. Prior to the move, in December 2014, I went to the doctor because I was just not feeling like myself. I was constantly exhausted and nauseous. After some blood work, my primary at the time found my ALT and AST's to be almost 4 times what they should be. Naturally, she told me to cut back on the alcohol, and loose a bit of weight as it is likely NAFLD, something almost 30% of americans have and understandable that me, just finishing 5 years of college might not be the healthiest at the current time. With that, I took the advise, cut back on drinking and managed to lose a bit of wight. Still, I wasn't feeling well and had actually started to get mild/moderate pain/discomfort in my right side. I managed to make the move, only to continue to get worse. Shortly after the move, I saw a GI here in SC where he did a biopsy to see whats going on. With that biopsy, came the results that were a total shock to me. I don't understand how it could have progressed so quick or even at my age. I am not a heavy drinker, however when I went out in college on the weekends, it could be described as "binge drinking".
So I guess my question is, does anyone on the page have a similar experience? My doctor wants to do blood work every two months to monitor the progression but for some reason, that just doesn't feel like enough. Sorry for the long post and thank you in advance for the feedback!
I too am new here and would appreciate any feedback! I am a 25 year old, 6'2, 210 pound guy who was just recently diagnosed with stage 3, early stage 4 Bridging Fibrosis/Cirrhosis after recently moving across the country for a new job. Prior to the move, in December 2014, I went to the doctor because I was just not feeling like myself. I was constantly exhausted and nauseous. After some blood work, my primary at the time found my ALT and AST's to be almost 4 times what they should be. Naturally, she told me to cut back on the alcohol, and loose a bit of weight as it is likely NAFLD, something almost 30% of americans have and understandable that me, just finishing 5 years of college might not be the healthiest at the current time. With that, I took the advise, cut back on drinking and managed to lose a bit of wight. Still, I wasn't feeling well and had actually started to get mild/moderate pain/discomfort in my right side. I managed to make the move, only to continue to get worse. Shortly after the move, I saw a GI here in SC where he did a biopsy to see whats going on. With that biopsy, came the results that were a total shock to me. I don't understand how it could have progressed so quick or even at my age. I am not a heavy drinker, however when I went out in college on the weekends, it could be described as "binge drinking".
So I guess my question is, does anyone on the page have a similar experience? My doctor wants to do blood work every two months to monitor the progression but for some reason, that just doesn't feel like enough. Sorry for the long post and thank you in advance for the feedback!
Hi Hector,
Thank you again for the positive and reinforcing message. I think your right, once i get a full diagnosis and plan of action, mentally I will start to feel better. Unfortunately right now is just waiting for that appointment, which is on January 5th.
I'm working day by day on managing my stress level however, its definitely a struggle between work not being able to get out of my head with all this. We are trying to come up with different scenarios on how to approach this should it taking time off or moving back to CO however only time will tell.
Thank again for the response Hector! I really appreciate it!
Thank you again for the positive and reinforcing message. I think your right, once i get a full diagnosis and plan of action, mentally I will start to feel better. Unfortunately right now is just waiting for that appointment, which is on January 5th.
I'm working day by day on managing my stress level however, its definitely a struggle between work not being able to get out of my head with all this. We are trying to come up with different scenarios on how to approach this should it taking time off or moving back to CO however only time will tell.
Thank again for the response Hector! I really appreciate it!
Hi what does your discomfort feel like on your right side? I've had a bruised feeling that's wraps around to my back and feels uncomfortable to lay on. This had been going on for a year
1 Comments
Hi, I have the same feeling of discomfort. The pain in my bach
COMMUNITY LEADER
Wow this is all great news. You are doing everything that anyone could do in your situation. I am glad your doctor has done all that he could and is now helping you to get further expertise.
I am very sorry you are not feeling well and your ability to do normal things is limited. Unfortunately all this takes time, and when we are feeling ill, waiting can seem like forever. Remind yourself that days and weeks go by, wasn’t it just summer? Things change. You always haven't felt this way and you won't always feel this way. Soon you will get to the bottom of what is going on and then you can take action to deal with it.
From my own experience, once I knew what I was facing, no matter what it was, I felt better mentally because I could put a name on it and then I could do what I needed to do to be as healthy as I could under the circumstances.
From my personal experience the best thing you can do is to try to stay hopeful and positive. Some people may think this is naive or silly and unrealistic. Frankly I have never seen negative thinking do anyone any good. First, it doesn't change the situation, reality is what it is. Secondly, worrying about what "could" happen, only adds additional stress to what we are already dealing with. That is the last thing we need when we are ill. In my opinion negative thinking is a waste of very valuable energy that is much better used for coping with the day to day struggles of not feeling well. I know being positive all the time is easier said than done and we can’t help but worry and feel down sometimes. But we don’t need perfection. Thinking positive is just a goal to aim for and help us focus our mind on. The more energy we can focus on the positive, the better we can deal with whatever challenges come our way.
Hang in there.
Hector
I am very sorry you are not feeling well and your ability to do normal things is limited. Unfortunately all this takes time, and when we are feeling ill, waiting can seem like forever. Remind yourself that days and weeks go by, wasn’t it just summer? Things change. You always haven't felt this way and you won't always feel this way. Soon you will get to the bottom of what is going on and then you can take action to deal with it.
From my own experience, once I knew what I was facing, no matter what it was, I felt better mentally because I could put a name on it and then I could do what I needed to do to be as healthy as I could under the circumstances.
From my personal experience the best thing you can do is to try to stay hopeful and positive. Some people may think this is naive or silly and unrealistic. Frankly I have never seen negative thinking do anyone any good. First, it doesn't change the situation, reality is what it is. Secondly, worrying about what "could" happen, only adds additional stress to what we are already dealing with. That is the last thing we need when we are ill. In my opinion negative thinking is a waste of very valuable energy that is much better used for coping with the day to day struggles of not feeling well. I know being positive all the time is easier said than done and we can’t help but worry and feel down sometimes. But we don’t need perfection. Thinking positive is just a goal to aim for and help us focus our mind on. The more energy we can focus on the positive, the better we can deal with whatever challenges come our way.
Hang in there.
Hector
Hi Hector,
Thank you so much for the informative response. I do live in Charleston and have called my GI to give me a referral to MUSC. I am also working on getting all of the reports for my records. I am now just waiting on a call from MUSC to schedule an appointment.
I was checked for Hep A,B and C and all were negative. So I do know that Hep is not the underlying cause. I believe I was also checked for the genetic associated diseases and all those were negative as well. One thing to note is that I had more iron than normal however it was not severe enough to be labeled as Hemocromotosis.
Managing my situation has definitely been a battle because I just don't feel like the person I used to be. Before all this started I was involved sports, traveled on pretty regular basis including setting up a non-profit in Africa and always one to get friends together for any reason. Now all that just seems exhausting and I barely have any energy/drive to do anything after work. Is that just going to get worse or is that something that will pass?
Thank you again for the response. I read your bio and what you have been through is nothing short of hell. Very happy to hear you made it through and are able to live your life again!
Thank you so much for the informative response. I do live in Charleston and have called my GI to give me a referral to MUSC. I am also working on getting all of the reports for my records. I am now just waiting on a call from MUSC to schedule an appointment.
I was checked for Hep A,B and C and all were negative. So I do know that Hep is not the underlying cause. I believe I was also checked for the genetic associated diseases and all those were negative as well. One thing to note is that I had more iron than normal however it was not severe enough to be labeled as Hemocromotosis.
Managing my situation has definitely been a battle because I just don't feel like the person I used to be. Before all this started I was involved sports, traveled on pretty regular basis including setting up a non-profit in Africa and always one to get friends together for any reason. Now all that just seems exhausting and I barely have any energy/drive to do anything after work. Is that just going to get worse or is that something that will pass?
Thank you again for the response. I read your bio and what you have been through is nothing short of hell. Very happy to hear you made it through and are able to live your life again!
Check also for B or C hepatitis. I have 27 years old, probably infected on birth, discovered 6 month ago, my fibroscan show 10.1 kPa(F3).
Good luck!
Good luck!
hi there
25 and having F3/F4 is a total shock to me, Im stunned. So sorry you have this health issue. Hector has pretty much nailed it already. Your drinking is pretty normal and something I did for 20 years! I have a 4.2kpa Fibroscan and clear ultrasound, bloods all good. So I think its a safe bet that Alcohol is not the cause, so dont feel guilty about the fact you liked to go for some beers, most do. I have heard of a 23 year old who died of cirrhosis, he started drinking at 12 and was daily drinking by 13. At his worst he was drinking 3 bottles of vodka a day, so you see someone your age would have to be a massive drinker for alcohol to be the cause.
What is more likely is fatty liver disease, which you may have had as a child. for some reason some people just get issues with fat building in the Liver, possibly genetic. Bad diets dont help though.
I agree that you need to really manage your medical situation, get to know what the numbers mean and have some discussion with your doctors to push forward as best you can. the first things you can do is to have a Liver friendly diet and light exercise, hopefully you can get rid of some liver fat.
25 and having F3/F4 is a total shock to me, Im stunned. So sorry you have this health issue. Hector has pretty much nailed it already. Your drinking is pretty normal and something I did for 20 years! I have a 4.2kpa Fibroscan and clear ultrasound, bloods all good. So I think its a safe bet that Alcohol is not the cause, so dont feel guilty about the fact you liked to go for some beers, most do. I have heard of a 23 year old who died of cirrhosis, he started drinking at 12 and was daily drinking by 13. At his worst he was drinking 3 bottles of vodka a day, so you see someone your age would have to be a massive drinker for alcohol to be the cause.
What is more likely is fatty liver disease, which you may have had as a child. for some reason some people just get issues with fat building in the Liver, possibly genetic. Bad diets dont help though.
I agree that you need to really manage your medical situation, get to know what the numbers mean and have some discussion with your doctors to push forward as best you can. the first things you can do is to have a Liver friendly diet and light exercise, hopefully you can get rid of some liver fat.
COMMUNITY LEADER
Hi and welcome to the Cirrhosis of the Liver Community.
I absolutely agree with you that something is going on that you need to address now, before whatever it is gets any worse. Liver disease is a progressive disease which only gets worse over time if the underlying cause is not addressed.
First, you need to find out what type of liver disease you have. Is it fatty liver disease or something else? The biopsy report should say. By looking at the liver cells under a microscope the pathologist can tell by the damage to the liver cells, what has caused the damage. I would recommend getting a copy of the biopsy report from the doctor along with all of your blood labs and any other testing that has been done to this point. Also besides the Stage of liver disease, the report will indicate how much inflammation you have. Inflammation is an indication of how rapidly you can expect your liver disease to progress. How much ongoing damage is being done.
The ALT and ALT blood numbers indicate the ongoing damage to the liver. These enzymes are giving off into the blood when liver cells are being damaged. . But it doesn’t tell us what is causing the damage. Further tests need to be performed. Do you have any other blood level abnormalities? What is your platelet count?
A little info on fatty liver disease. While many Americans have some level of fatty liver disease they don’t have the amount of damage you have at your age. Stage 3 liver diseases bordering on stage 4 cirrhosis is a serious health concern. Especially for someone your age. Once you develop cirrhosis you may start to have complications from the cirrhosis which can have a major impact on your life. So that is why I recommend you get to the bottom of what is going on while you still have time to prevent progressing to full blown cirrhosis.
Also as regards to alcohol…it typically takes many decades of alcoholism to develop alcoholic liver disease. The vast majority of people with alcoholic liver disease and cirrhosis are between the ages of 55-65 so I doubt that is the underlying cause of your liver disease.
That said, now that you know you have advanced liver disease, you don’t want to drink or do anything to add further injure your liver so you should not drink or take any drugs that are toxic to the liver as any additional damage will speed up the progression of your liver disease.
I agree you need to do more than just “wait and see”. You need to get a proper, full, diagnosis and then see if there is anything you can do to either stop or slow down the progression of the disease. From my experience the vast majority young people I see with advanced liver disease have a hereditary liver disease which has gone undetected until they start to show signs of advanced disease. Did the GI do blood tests for autoimmune liver diseases, Wilson's disease (a disease of copper over-load), hemochromatosis (iron overload)? He/she should know what type of liver disease you have before taking a wait and see approach. You should get copies of your lab results.
My main suggestion, what I would recommend and insist that my 25 year old nephew do in your shoes, is to go to a major teaching hospital where they have experts in liver disease to get to the bottom of what is going on. Doctors that work every day with people with advanced liver diseases.
I am not sure where exactly you live in SC but I would recommend you go to Medical University of South Carolina, Charleston, SC if at all possible. They have a liver transplant program there and so have the best liver doctors in the state. Not that everyone with liver disease will need a transplant but this is where the best liver disease doctors work. A hepatologist (liver specialist) there would be the person you would want to see as they are familiar with every type of liver disease and they are aware of all of the latest treatments that are available for all liver diseases.
MUSC Health Digestive Disease Center
Call (843) 792-6982 or 1-800-922-5250
8:00a–4:30p (Mon-Fri)
or their Liver Transplant Center
Melissa Hulsey, RN
Liver Coordinator
(843) 876-7218
If you are closer to another large city in another state let me know and I will let you know where a liver transplant center is nearby.
Tell them what is going on and ask for an appointment with a hepatologist to get a full evaluation of your liver disease.
I hope this help you to take the next step in learning and managing you liver disease.
Hector
I absolutely agree with you that something is going on that you need to address now, before whatever it is gets any worse. Liver disease is a progressive disease which only gets worse over time if the underlying cause is not addressed.
First, you need to find out what type of liver disease you have. Is it fatty liver disease or something else? The biopsy report should say. By looking at the liver cells under a microscope the pathologist can tell by the damage to the liver cells, what has caused the damage. I would recommend getting a copy of the biopsy report from the doctor along with all of your blood labs and any other testing that has been done to this point. Also besides the Stage of liver disease, the report will indicate how much inflammation you have. Inflammation is an indication of how rapidly you can expect your liver disease to progress. How much ongoing damage is being done.
The ALT and ALT blood numbers indicate the ongoing damage to the liver. These enzymes are giving off into the blood when liver cells are being damaged. . But it doesn’t tell us what is causing the damage. Further tests need to be performed. Do you have any other blood level abnormalities? What is your platelet count?
A little info on fatty liver disease. While many Americans have some level of fatty liver disease they don’t have the amount of damage you have at your age. Stage 3 liver diseases bordering on stage 4 cirrhosis is a serious health concern. Especially for someone your age. Once you develop cirrhosis you may start to have complications from the cirrhosis which can have a major impact on your life. So that is why I recommend you get to the bottom of what is going on while you still have time to prevent progressing to full blown cirrhosis.
Also as regards to alcohol…it typically takes many decades of alcoholism to develop alcoholic liver disease. The vast majority of people with alcoholic liver disease and cirrhosis are between the ages of 55-65 so I doubt that is the underlying cause of your liver disease.
That said, now that you know you have advanced liver disease, you don’t want to drink or do anything to add further injure your liver so you should not drink or take any drugs that are toxic to the liver as any additional damage will speed up the progression of your liver disease.
I agree you need to do more than just “wait and see”. You need to get a proper, full, diagnosis and then see if there is anything you can do to either stop or slow down the progression of the disease. From my experience the vast majority young people I see with advanced liver disease have a hereditary liver disease which has gone undetected until they start to show signs of advanced disease. Did the GI do blood tests for autoimmune liver diseases, Wilson's disease (a disease of copper over-load), hemochromatosis (iron overload)? He/she should know what type of liver disease you have before taking a wait and see approach. You should get copies of your lab results.
My main suggestion, what I would recommend and insist that my 25 year old nephew do in your shoes, is to go to a major teaching hospital where they have experts in liver disease to get to the bottom of what is going on. Doctors that work every day with people with advanced liver diseases.
I am not sure where exactly you live in SC but I would recommend you go to Medical University of South Carolina, Charleston, SC if at all possible. They have a liver transplant program there and so have the best liver doctors in the state. Not that everyone with liver disease will need a transplant but this is where the best liver disease doctors work. A hepatologist (liver specialist) there would be the person you would want to see as they are familiar with every type of liver disease and they are aware of all of the latest treatments that are available for all liver diseases.
MUSC Health Digestive Disease Center
Call (843) 792-6982 or 1-800-922-5250
8:00a–4:30p (Mon-Fri)
or their Liver Transplant Center
Melissa Hulsey, RN
Liver Coordinator
(843) 876-7218
If you are closer to another large city in another state let me know and I will let you know where a liver transplant center is nearby.
Tell them what is going on and ask for an appointment with a hepatologist to get a full evaluation of your liver disease.
I hope this help you to take the next step in learning and managing you liver disease.
Hector
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