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Old 09-17-2005, 12:22 AM   #1
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Liver Disease??

I had a liver transplant way back in 1990 when I was 9 years old. I am now 24 years old, and about 3 years ago I went to the hospital because I was really sick. They took a blood test and my ALT/AST were really elevated in the 400 range. Prior to this my ALT/AST were always perfect when I had my routine Liver visit. I had to stay 12 days in the hospital. The doctor took a liver biopsy and the results were not good. I ended up having stage 4 cirrhosis of the liver. Since 2002 when this happened. I have a liver biopsy every year. And the results have not changed still stage 4. The doctor said this obviously has been going on along time.

But what I dont understand, as well as the doctor is that my blood tests are perfect, even now they are, except for that stint in the hospital in 2002. I take Prograf, Prednisone, cell cept and Immuran. I had a Liver transplant in 1990, I dont understand what happened to me, should I be having cirrhosis of the liver?? why is the blood work so perfect?? The doctor is puzzled he can't even tell me what happened. I'm hoping someone here will be able to help me. Thanks, Shane.

 
Old 09-18-2005, 01:21 AM   #2
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Re: Liver Disease??

No one can help me?? I'm really not joking.

 
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Old 09-18-2005, 07:23 AM   #3
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Re: Liver Disease??

i know your not,I just haven't had the time here or the energy to respond.Have you actually had a look at the past lab sheets to see just where those numbers actually have been?What exactly caused your liver failure that resulted in the Tx?I do know, just in my personal experience that you can have some major devistation going on in an organ(with me it is my kideys and liver involvement)but until that destruction reaches a certain level, it will not actually show up on any labs.my L kidney is unbelievably huge and covered(inside and out)with some huge polycysts but unbelievably all of my labs are still within the normal ranges and will continue to be until the damage becomes much more severe.Thats why getting routine ultrasounds are really important for someone who has a Dxed medical condition involving abdominal organs.my sons liver labs were actually just slightly out of range when he was first Dxed with congenital hepatic fibrosis back in 99,but after a rather revealing US and full liver work up,he was actually down to only 20% of his liver function left.and believe it or not, he never really even seemed sick.we had absolutely no clue that all of this horrid destruction was even going on up til he actually started vomiting up blood at school one day.Man, talk about the ultimate shock.He ended up getting his lifesaving Tx in 2000.and so far so good.i really am rather suprised that your GI did not notice just what in the heck was going onwith you.i really am rather curious about just what actually caused your liver failure to occur that resulted in your needed tx.I do know that with certain diseases, you can get the same disease back again that already caused you to lose your original liver.i really do think that you need to start seeing a new GI doc,one that would be much more 'hands on"than your current doc.for your cirhosis to have actully have progressed this far pretty much right under his nose,reallyis rather appalling when you consider just what having this happen could do to you and your liver.I really do feel for you.please let me know what happens next here,i really do want to know?If you could also explain what happened with regards to your original liver and what caused you to lose it it would really be appreciated.good luck shane.marcia

 
Old 09-18-2005, 09:39 PM   #4
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Re: Liver Disease??

Thank you very much for the response. I got a little upset because I wrote to alot of message boards and no one would right back to me. They thought I was joking . Anyway when I was about 5 years old my pediatrician found that why liver was unusually big. So he did tests and bloodwork and my ALT/AST were in the 300's. They stayed that way for 4 years until I needed to go on the list. I was diagnosed with congenital hepatic fibrosis-Portal Hypertension. I mean I was sick, I look yellow, I never ate, and I remember this from when I was a kid. So I had my Liver Transplant at the age of 9 in 1990. Everything went good I was always followed up by my Transplant team in Boston up until 1999. then I had to switch over to a new Hepatologist at the Lahey Clinic In Mass. I have always been on cyclosporine and prednisone. However my new Liver Doctor said I didn't need prednisone anymore so he took me off it. My LFT's were always normal like in the 20's. But after in 2002 I was hospatilized and my LFT's were in the 400's. So then he did a biopsy. I thought it was because he took me off prednisone. But he said that with the stage 4 cirrohsis, it was going on for a very long time, possibly ever since the new liver. So he thinks maybe I have Autoimmune hepatits. Do you think so??. Im just so confused. How long does it take to develop this?? He follows we closely and I am due for another biopsy in the next few months. Thanks. Shane

 
Old 09-19-2005, 07:08 AM   #5
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Re: Liver Disease??

Sorry,i am running short on time right now shane but will answer you tomorrow ,K?marcia

 
Old 09-19-2005, 07:59 AM   #6
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Re: Liver Disease??

Wow, sorry to hear about your condition. I can see why you are confused since your blood tests have shown normal enzyme levels for such a long period of time and yet you managed to develop cirrossis. In reality cirrossis is just scar tissue which replaces the normal healthy liver tissue and structure. When enough scar tissue develops and replaces normal tissue, the liver cannot keep up with the demand that your body places upon it everyday and your enzymes will begin to rise. It is possible for this process to occur very slowly as not to elevate your enzymes until there is not enough healthy liver tissue left to keep up with normal liver function and your enzymes will have no choice but to elevate.

The only way to reveal this slow and stealthy degeneration is a liver biopsy (unfortunately). The question for you is: Did you have any liver biopsies from 1990 to 2002? These would likely have revealed the problem sooner.

By the way, you sure are on a lot of anti-rejection drugs. These too can be hard on you liver since they must be metabolized. Are you still on Prograf, cell cept and Immuran because your doctor suspects rejection? Have you always been on this regement? For comparison, I take only 1mg prograf twice a day for my transplant. Have you considered another doctor's opinion about your condition?

Last edited by stud50; 09-19-2005 at 08:13 AM.

 
Old 09-20-2005, 02:42 AM   #7
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Re: Liver Disease??

Quote:
Originally Posted by stud50
Wow, sorry to hear about your condition. I can see why you are confused since your blood tests have shown normal enzyme levels for such a long period of time and yet you managed to develop cirrossis. In reality cirrossis is just scar tissue which replaces the normal healthy liver tissue and structure. When enough scar tissue develops and replaces normal tissue, the liver cannot keep up with the demand that your body places upon it everyday and your enzymes will begin to rise. It is possible for this process to occur very slowly as not to elevate your enzymes until there is not enough healthy liver tissue left to keep up with normal liver function and your enzymes will have no choice but to elevate.

The only way to reveal this slow and stealthy degeneration is a liver biopsy (unfortunately). The question for you is: Did you have any liver biopsies from 1990 to 2002? These would likely have revealed the problem sooner.

By the way, you sure are on a lot of anti-rejection drugs. These too can be hard on you liver since they must be metabolized. Are you still on Prograf, cell cept and Immuran because your doctor suspects rejection? Have you always been on this regement? For comparison, I take only 1mg prograf twice a day for my transplant. Have you considered another doctor's opinion about your condition?
Thanks for the reply Stud50, Actually Im on Prograf-12MG a day, 6 in the morning and six at night. I originally was on Cyclosporine but he changed me to prograf because he said it would treat inflammation better, but I thought 12mg a day was a real high doasge, I guess I was right, your only on 2mg a day?? wow. Im 15 years out and on 12mg. Before the episode I had in 2002, I never had a biopsy. Now I have them every year. I used to take 150mg of sandimmune, 5mg of prednisone, and Bactrim for the liver. Now I have to take Prograf-cellcept-prednisone-immuran-bactrim for the liver. I'm so sick of taking so many pills. So I have a few questions, how possibly could have this occured?? how advanced is stage4 cirrohsis??. I have thought alot about getting another doctor's opinion. But where can I go?? a regular hospital?? am I looking for a GI doctor or a hepatologist?? I also want to have a biospy by another doctor as well to see. But I don't know how to do this. I've never gone anywhere else. Shane

 
Old 09-20-2005, 08:03 AM   #8
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Re: Liver Disease??

Hey dude, glad your back. Here's a short description of the evolution of cirrohssis which can be assessed on degrees of fibrosis and nodule formation (just a fancy way of saying scar tissue and the associated tissue structure). Actual pictures of each stage would give you a better idea of what is involved but I don't know how to get you such pictures in a text only space. The following four stages can be identified with some approximation usually on a needle biopsy specimen:

Stage 1-INCOMPLETE SEPTAL (Incomplete bridging fibrosis, no nodules)

Stage 2-EARLY (Thin bridging fibrosis with dissecting nodules)

Stage 3-MODERATELY ADVANCED (Thick bridging fibrosis with dissecting nodules)

Stage 4-ADVANCED (Wide septa with regenerative hyperplastic nodules)

Now a bit about biopsies. First let me say I am not a big fan of this proceedure. I believe it should be used sparingly and transplant surgeons and many GI's go overboard using this proceedure. That being said, there ARE times when biopsies do make sense. eg At the one year interval after a transplant to make sure that silent rejection is not occuring. The only other time a doctor should consider a biopsy is when rejection, disease or certin other medical conditions are present and the doctor has no other way to diagnose the problem. A biopsy should not be used to monitor the progress of a disease (it is a poor indicator of the condition of the whole liver since it inspects tissue from a localized site only). Since you already know the condition of your liver, I'm not sure what another biopsy could tell your doctor. Remember that there are complications that can occur with a biopsy (to say nothing about the discomfort). At my one year biopsy in Dallas after my transplant (1 year ago this month actually), the doctor ignored my warning that I had a cough and was sneezing a lot from allergies. He assured me that this was not a problem (although I knew better). Against my wishes and on his insistance, he performed the biopsy without incident. On my way home from the procedure I sneezed and coughed several times and began bleeding internally. The resulting hematoma was the size of a small grapefruit and almost burst my liver. I spent more time recovering from this botched procedure than I spent recovering from my transplant. Of course I fired my transplant surgeons (I have no problem firing bad doctors and there are a lot of them out there).

Speaking of doctors, I would suggest finding a hepatologist (although I personally have a GI that I like). Hepatoligists usually see a lot of your type of case and might be more knowledgeable about your treatment (also they usually do better biopsies than a GI - but not always) I am not familiar with any doctors on the east coast that I could reccommend. maybe someone else reading your post could help out with that question. But don't be afraid to seek out the best doctors no matter where they are (there are so few decent doctors from my experience). My first hepatologist (Karon Lindsey) was in LA and I had to fly from Austin to LA once a month just to see her. She was an exceptional doctor and it was worth the extra effort to see her.

Finally, about your meds. I started out taking about 20mg prograf, cel cept, pred., bactrum and a few others. Careful monitoring of the rejection numbers (through blood tests twice a week) allowed me to come down off of this medication and eleminate all but the prograf (2mg/day). This test is a very special test that monitors how much rejection medication is in the bloodstream (Ideally, long term this number should be about 10 but the doctors may keep it much higher after transplant). If the rejection number drops below 10, the liver is not metabolising the medication effeciently enough or you skipped your dose. This is an invitation for tissue rejection. Do you know what your rejection number is? If it is much above 10 you may be over medicated (especially if your enzymes do not indicate rejection). I know how sick you must be from taking all thoes pills. Prograf is especially hard on the kidneys besides all the side effects you must be feeling. If your doctor is not monitoring the rejection number then it may be time to find a specialist who is more in tune with transplant patients.

Good luck bud! Hope this post is not too long.... Bill

Last edited by stud50; 09-20-2005 at 09:51 AM.

 
Old 09-20-2005, 11:38 PM   #9
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Re: Liver Disease??

Quote:
Originally Posted by stud50
Hey dude, glad your back. Here's a short description of the evolution of cirrohssis which can be assessed on degrees of fibrosis and nodule formation (just a fancy way of saying scar tissue and the associated tissue structure). Actual pictures of each stage would give you a better idea of what is involved but I don't know how to get you such pictures in a text only space. The following four stages can be identified with some approximation usually on a needle biopsy specimen:

Stage 1-INCOMPLETE SEPTAL (Incomplete bridging fibrosis, no nodules)

Stage 2-EARLY (Thin bridging fibrosis with dissecting nodules)

Stage 3-MODERATELY ADVANCED (Thick bridging fibrosis with dissecting nodules)

Stage 4-ADVANCED (Wide septa with regenerative hyperplastic nodules)

Now a bit about biopsies. First let me say I am not a big fan of this proceedure. I believe it should be used sparingly and transplant surgeons and many GI's go overboard using this proceedure. That being said, there ARE times when biopsies do make sense. eg At the one year interval after a transplant to make sure that silent rejection is not occuring. The only other time a doctor should consider a biopsy is when rejection, disease or certin other medical conditions are present and the doctor has no other way to diagnose the problem. A biopsy should not be used to monitor the progress of a disease (it is a poor indicator of the condition of the whole liver since it inspects tissue from a localized site only). Since you already know the condition of your liver, I'm not sure what another biopsy could tell your doctor. Remember that there are complications that can occur with a biopsy (to say nothing about the discomfort). At my one year biopsy in Dallas after my transplant (1 year ago this month actually), the doctor ignored my warning that I had a cough and was sneezing a lot from allergies. He assured me that this was not a problem (although I knew better). Against my wishes and on his insistance, he performed the biopsy without incident. On my way home from the procedure I sneezed and coughed several times and began bleeding internally. The resulting hematoma was the size of a small grapefruit and almost burst my liver. I spent more time recovering from this botched procedure than I spent recovering from my transplant. Of course I fired my transplant surgeons (I have no problem firing bad doctors and there are a lot of them out there).

Speaking of doctors, I would suggest finding a hepatologist (although I personally have a GI that I like). Hepatoligists usually see a lot of your type of case and might be more knowledgeable about your treatment (also they usually do better biopsies than a GI - but not always) I am not familiar with any doctors on the east coast that I could reccommend. maybe someone else reading your post could help out with that question. But don't be afraid to seek out the best doctors no matter where they are (there are so few decent doctors from my experience). My first hepatologist (Karon Lindsey) was in LA and I had to fly from Austin to LA once a month just to see her. She was an exceptional doctor and it was worth the extra effort to see her.

Finally, about your meds. I started out taking about 20mg prograf, cel cept, pred., bactrum and a few others. Careful monitoring of the rejection numbers (through blood tests twice a week) allowed me to come down off of this medication and eleminate all but the prograf (2mg/day). This test is a very special test that monitors how much rejection medication is in the bloodstream (Ideally, long term this number should be about 10 but the doctors may keep it much higher after transplant). If the rejection number drops below 10, the liver is not metabolising the medication effeciently enough or you skipped your dose. This is an invitation for tissue rejection. Do you know what your rejection number is? If it is much above 10 you may be over medicated (especially if your enzymes do not indicate rejection). I know how sick you must be from taking all thoes pills. Prograf is especially hard on the kidneys besides all the side effects you must be feeling. If your doctor is not monitoring the rejection number then it may be time to find a specialist who is more in tune with transplant patients.

Good luck bud! Hope this post is not too long.... Bill
Ohh!! Thank you so much for all that info!! it wasn't too long at all. I've been seeking help, I wrote to numerous message boards and no one responded at all. this is great you have been so helpful to me, and I appreciate it very much. I didn't know there was that much risk in having a biopsy, I knew you could develop some bleeding but that's about all I knew. The biopsy however I dont seem to mind them. I have it done with sedation, then I get monitored for about 2 hours after the procedure to make sure no bleeding has occured. So after my transplant I should have gotten a biopsy, Instead of waiting for a problem then getting a biopsy. Now Im upset, This could have been prevented way back in the beginning. The doctor has my regection number at 6. Everytime I get bloodwork he checks my prograf levels and they are around 6. However I only go to get my bloodwork every 3 months. Should I be getting it more often than this??. So about the stage4 is that pretty far advanced?? am I in real danger or is there other stages to go. Thanks Bill. Shane.

 
Old 09-21-2005, 02:43 PM   #10
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Re: Liver Disease??

Shane, for as much prograf and cel cept as you are taking, 6 seems like a rather low rejection number. This may be due to the fact that your liver is in bad shape (yes stage 4 is as bad as it gets) and cannot easily metabolize the anti rejection drugs. This is what that number is measuring. If your liver were in better shape it might be possible to reduce some of those meds and still achieve a better rejection number (at least 10-12) but this is something that a specialist could answer better than I. Your bloodwork every three months is about right (this is how often my blood is monitored also).

Hey bud, I don't know how to ask this but has you doctor discussed another transplant with you? The sad fact is your liver is waring out and you may soon start developing portal hypertension and all the other symptoms associated with a bad liver. Anyway this is something that you may have to face at some point. You are too young still to be having to deal with this kind of health problem and you deserve to have a life free from this burdon.

 
Old 09-21-2005, 11:43 PM   #11
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Re: Liver Disease??

Quote:
Originally Posted by stud50
Shane, for as much prograf and cel cept as you are taking, 6 seems like a rather low rejection number. This may be due to the fact that your liver is in bad shape (yes stage 4 is as bad as it gets) and cannot easily metabolize the anti rejection drugs. This is what that number is measuring. If your liver were in better shape it might be possible to reduce some of those meds and still achieve a better rejection number (at least 10-12) but this is something that a specialist could answer better than I. Your bloodwork every three months is about right (this is how often my blood is monitored also).

Hey bud, I don't know how to ask this but has you doctor discussed another transplant with you? The sad fact is your liver is waring out and you may soon start developing portal hypertension and all the other symptoms associated with a bad liver. Anyway this is something that you may have to face at some point. You are too young still to be having to deal with this kind of health problem and you deserve to have a life free from this burdon.
You have givin me more information in 2 days, than the doctor has in 6 years. You can be my doctor, LOL!!. Actually the doctor has discussed another transplant but briefly. He said down the road later in the years you might need another transplant. If stage 4 is as bad as it gets, how long does he think it will take then. I aksed him and he said the Liver is very slow in the progression of stages in Liver Failure. So with him saying that, I dont know how long it will be until I need another transplant. He said with the medicine he put me on should delay or stop the progression, he said you will always have stage 4. But if we do something now it will stop it from going any further. How can it go any further?? if I am at stage 4. How long do you think it will take for me to need another transplant??. Shane.

 
Old 09-22-2005, 06:26 AM   #12
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Re: Liver Disease??

Hey thanks for the complement. Actually when I discovered that most doctors could not answer any of my questions (and I ask a lot of hard questions) I decided to start doing research about liver desease. After reading all the medical books and talking to several research doctors (the real experts in this field). I realized pretty soon that I can out class most doctors when it came to my condition. I quit asking them questions and just started taking all my test results and drew my own conclusions. I then started telling the doctors how I wanted treatment. If they couldn't give me what I wanted I found another doctor but they usually agreed with my conclusions. My advise to you (and any one else reading this post) "Do your homework, be responsible for (or at least an integral part of) the decission making process with your doctors". It the doctor dosent cooperate, fire him and go get another doctor. Remember you are in charge and he is there to provide a service for you.

To answer your question about a transplant, there is no easy answer to that question. The best thing that I could advise is to wait until your quality of life begins to suffer. This is a choice that you will have to make based upon what's going on with your health. I turned down three opportunities for a transplant before I felt that I was ready to take the plunge. Fortunately I was still healthy enough to recover from the operation very quickly (in fact I was up and walking the next day and out shopping at Walmart within a week of my transplant). Your doctor is mostly correct about the progression of this disease however if rejection sets in, all bets are off. You can be dead in short order. As long as you are keeping tabs on your rejection numbers and liver functions (and taking your meds properly) you should be able to hold out for a while.

Last edited by stud50; 09-22-2005 at 06:30 AM.

 
Old 09-23-2005, 01:09 AM   #13
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Re: Liver Disease??

Quote:
Originally Posted by stud50
Hey thanks for the complement. Actually when I discovered that most doctors could not answer any of my questions (and I ask a lot of hard questions) I decided to start doing research about liver desease. After reading all the medical books and talking to several research doctors (the real experts in this field). I realized pretty soon that I can out class most doctors when it came to my condition. I quit asking them questions and just started taking all my test results and drew my own conclusions. I then started telling the doctors how I wanted treatment. If they couldn't give me what I wanted I found another doctor but they usually agreed with my conclusions. My advise to you (and any one else reading this post) "Do your homework, be responsible for (or at least an integral part of) the decission making process with your doctors". It the doctor dosent cooperate, fire him and go get another doctor. Remember you are in charge and he is there to provide a service for you.

To answer your question about a transplant, there is no easy answer to that question. The best thing that I could advise is to wait until your quality of life begins to suffer. This is a choice that you will have to make based upon what's going on with your health. I turned down three opportunities for a transplant before I felt that I was ready to take the plunge. Fortunately I was still healthy enough to recover from the operation very quickly (in fact I was up and walking the next day and out shopping at Walmart within a week of my transplant). Your doctor is mostly correct about the progression of this disease however if rejection sets in, all bets are off. You can be dead in short order. As long as you are keeping tabs on your rejection numbers and liver functions (and taking your meds properly) you should be able to hold out for a while.
Thanks again for all the information. Now I'm out of questions (LOL). I might think of some more but I feel like I'm bugging you now. Actually I do have a quick question. If you don't mind me asking, what happened with your liver?? what disease do you sucomb too??. How long did you have liver problems before you got your transplant. Hope to hear from you soon. shane.

 
Old 09-23-2005, 06:41 AM   #14
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Re: Liver Disease??

Well long story.... I was born to a mother who was infected with Hep B virus at the time. Since birth is nearlty a 100% effecent transmission route for Hep B, I aquired the disease during birth and before my immune system was fully developed. As a result when my immune system did develop, the virus was fully intrenched and the Immune system did not reccognize the virus as a forien antigen (protien). As a result I was not able to develop antibodies to this virus and I became a chronic Hep B carrier. Finally my liver developed Stage 4 chrissos over the years and necessitated the need for a transplant.

The good news for Hep B carriers is that there is now a partial cure for this virus and represents a new type of treatment for certin viral diseases. This medication is aquired from human blood donations from people who have developed the antibodies through Hep B vaccinations or contracting and clearing this virus through uncontrolled exposure. The antibodies are extracted and then injected into the carrier. The anti bodies activelly seek out the virus and kill it just as a normal immune response would do. This drug is called HBIG (Hepatitis B Immune Globbulin). As a result of this new drug and a succesful transplant I am now perfectly healthy and lead a normal and active life.

Good luck - Bill

PS. If you have any other questions just post them and I will be happy to answer them if I can.

Last edited by stud50; 09-23-2005 at 07:06 AM.

 
Old 09-23-2005, 02:09 PM   #15
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Re: Liver Disease??

did they test you for other liver disorders like AIH?

 
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