Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Mr. Norway (do you have a name)/? and , Mine also came on slowly. I wouldn't say I was sick, aside from deadly fatigue when I had a flare-up for at least 15 yearsafter I was diagnosed., The prednisone was worse than the disease. I never even turned yellow until 1997 and I was Dx in 1982. This is a disease that will sneak up on you. Hang in there and take care, alot of people do go into remission. This group is also a great source of info. Your experience with meat does not strike me as unusual. Livers have to work hard to process healthy meat... forget about sick meat. You will find out lots of ways to stay healthy. Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Monday, May 13, 2002 11:52 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick I had a similar experience with my AIH. I went for a routine physical in October because I had moved back home to Chicago. During last summer I noticed that my fingernails appeared orange and the whites of my eyes were yellowish. I felt fine then and was too busy to take much notice. During the physical the doctor told me that my liver enzymes were extremely elevated, 40 X normal. I felt fine, but was becoming itchy and my urine was becoming very dark. He felt I had a gallstone, so I was sent for an ultrasound of the gallbladder. It did not show a stone. He was really puzzled and sent me to a liver specialist, even tho I did not feel it was necessary and did not want to go. I was just relieved that it wasn’t a gallstone. How naïve I was. The specialist hoped that I merely contracted mono and that the liver enzymes would return to normal. Somehow, I contracted mono but never felt sick from it. How I got it I will never know, but they felt I contracted it from one of my nieces or nephews upon moving back home Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Hi Patty, After I have “adjusted” to having AIH, and carefully explained the illness to my mother, she has started telling everyone that I have AIDS! She just doesn’t understand it and this compounds my frustration. I don’t know who she has told. If I try to explain it again to her she will say she understood the first time. Oh boy! [ ] I`ve got AIH but idon`t feel sick Hi!.in May 2001 I went to see the doctor because of a bad flu. He noticed my eyes were also yellow, so I had to take a blood test.It showed a liver not functioning properly. (my values was more than twice as much than normal) But the doctor could not understand what it was, so he took more blood tests and found out my liver was getting a little bit better, so he told me to wait a while and then come back. The weird thing is that I was not feeling sick at all (aside from the flu). I did come back in july and took another blood test. My doctor said that my liver was getting better and that i should wait another three months, And then check again (he said I probably would be alright by then). In august, I had to go to the army, but I was there for only three days because of my liver.(If i wanted to, I could be there, but i chose not to) When i got back i was very happy because i could start to study instead of wasting a year in the army. And all because of the liver problem wich I didn`t even notice. During this period I also did drink alcohol 1-3 times a week. And even more in the summer.. I almost forgot about my liver problem for a while and in late november I finally went to see another doctor. The new doctor immidiatly wanted me to take more tests at the hospital and was very surprised that i hadn`t done it before. He " transfered " me to a liver-specialist at the local hospital who put me on prednisolone 16. of january (this was before i got diagnosed with aih, but the doctor was almost sure it was aih so he put me on prednisolone (40mg)because my liver got worse. Around this time I was starting to have both yellow skin and eyes, and my urine was very dark.and i was perhaps feeling a bit listless. But i was still not feeling sick. Luckily I responded well to prednisolone and my liver is getting better and better. I am currently taking 15mg prednisolone and 100 mg imuran(started 9.april). What I think is bad is that I`ve had a hard time with the prednisolone, espessially my mental health is not at all what it used to be. I`ve had mood swings, get easily irritated, have sleeping problems, my memory is not at all what it used to be, And I also feel confused and sometimes stressed for no reason. I now also realize that some of my problems has gotten worse because i haven`t talked about it either.Prednisolone has also given me acne on face, neck and chest. Moonface, weight gain (10lbs.almost back to normal now..),headaches, joint pain , Stretchmarks on legs and lower back/butt(had some before prednisolone also, have much more now though). my ankles was also very swullen for a while. I`ve also noticed muscle weakness. The good thing is I`ve still not felt sick ( that means sick like having to stay in bed all day) because of my disease.In march 2001 my stomach started acting up because I ate meat in Brüssel. I remember i had these awful stomach cramps, and when i belched it TASTED like rotten egg...it was disgusting. I can also remember as long ago as in the middle of the year 2000, a friend said i was yellow in the eyes.I don`t even now how long i was yelllow in my eyes, because i can`t remember. I did not know yellow eyes was a symptom for liver disease.. I would really like to know if anyone else have experienced This kind of sneaking aih with no pain. Any Feedback on other things i mention is also very much appreciated A 20 year old male from norway Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 , I know this response is late however I have been out of town and am catching up. One of my favorites is after I went into liver failure, I happened to be at home in Mass at my mothers house. All of my brothers & sisters were home for my father's funeral. I was taken to the in the hospital and the news came back that my liver had failed and I needed a liver transplant. The neighbor across the street was spreading the word I was an alcoholic and therefore killed my liver. When I found out about this I was back in Florida. My mother, who is 73, was upset but did not understand enough about my disease to straighten out the neighbor. I called my sister and asked her to set the woman straight next time she went to visit my mother. I don't know what seh said but apparently the woman never said another word! You gotta have a sense of humor... Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Wednesday, May 15, 2002 8:40 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Hi Patty, After I have “adjusted” to having AIH, and carefully explained the illness to my mother, she has started telling everyone that I have AIDS! She just doesn’t understand it and this compounds my frustration. I don’t know who she has told. If I try to explain it again to her she will say she understood the first time. Oh boy! -----Original Message-----From: J. [mailto:scott_p@...] Sent: Tuesday, May 14, 2002 10:09 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Mr. Norway (do you have a name)/? and , Mine also came on slowly. I wouldn't say I was sick, aside from deadly fatigue when I had a flare-up for at least 15 yearsafter I was diagnosed., The prednisone was worse than the disease. I never even turned yellow until 1997 and I was Dx in 1982. This is a disease that will sneak up on you. Hang in there and take care, alot of people do go into remission. This group is also a great source of info. Your experience with meat does not strike me as unusual. Livers have to work hard to process healthy meat... forget about sick meat. You will find out lots of ways to stay healthy. Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Monday, May 13, 2002 11:52 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick I had a similar experience with my AIH. I went for a routine physical in October because I had moved back home to Chicago. During last summer I noticed that my fingernails appeared orange and the whites of my eyes were yellowish. I felt fine then and was too busy to take much notice. During the physical the doctor told me that my liver enzymes were extremely elevated, 40 X normal. I felt fine, but was becoming itchy and my urine was becoming very dark. He felt I had a gallstone, so I was sent for an ultrasound of the gallbladder. It did not show a stone. He was really puzzled and sent me to a liver specialist, even tho I did not feel it was necessary and did not want to go. I was just relieved that it wasn’t a gallstone. How naïve I was. The specialist hoped that I merely contracted mono and that the liver enzymes would return to normal. Somehow, I contracted mono but never felt sick from it. How I got it I will never know, but they felt I contracted it from one of my nieces or nephews upon moving back home Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 , I can tell you are a relative newby, I don't mind repeating my story but don't want to gross you out... I'll tell you anyway. I had come home on September 11th, 1997 (god, I hadn't realized the date until now when I countred back). I had received a call, my father had decided to check himself out of the hospital and go home on hospice. When my mother called she had been told a max of 72 hours until he filled up with fluid as he was refusing dialysis. I made my plane reservations then called my gasteroenterologist. I knew my liver was in trouble. He told me he understood, I had to go but be careful. I came home, arriving at 2AM in time to have one last conversation with my dad before he died the next day. Anyway I could not sleep for three days, I was wandering the house. I don't recall being weird yet it was a time when weirdness was OK because everyone was zombies. Finally Mon. AM at about 5:00 I had a splitting headache and had not slept for days. It was the day of the wake and I knew I needed sleep. I took 2 advils. Within 2 hours I was vomiting mass quantities of blood. In the ER all I remember was like a TV show them running through the ER with me on a stretcher yelling move! GI bleed. That's the last I remeber for four days. I 'woke'up on Thursday in the ICU. Then I was told I needed a transplant. They kept me for about a week, I stayed another 2 weeks with my mother than back to Miami for transplant eval on Oct 10. It took two months for all the preliminary tests during which time I was in and out of the hospital. I was put on the list Dec 8, 1997 and received the call, my beeper went off Feb 23, 1998. I now have a whole different set of issues related first to technical difficulties with the hepatic artery which led to my new bile ducts disintegrating, but they rebuilt them and now I have a mysterious 'lesion' at L4 which has resulted in a vetebral fracure most likely a lymphoma due to post transplant immunosuppression. But honestly, I basically feel great! Sorry this was probably much more of an answer than you expected. Whew! I get tired listening to me! Patty[ J. ] -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Thursday, May 23, 2002 8:24 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Oh my gosh! What a blabby neighbor she is! People who don’t know much about anything are the ones that talk the most. How did you decide you needed to go to the hospital? Did you suddenly feel bad? Did you have a transplant? How are you doing? I hope very well. -----Original Message-----From: J. [mailto:scott_p@...] Sent: Wednesday, May 22, 2002 9:53 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick , I know this response is late however I have been out of town and am catching up. One of my favorites is after I went into liver failure, I happened to be at home in Mass at my mothers house. All of my brothers & sisters were home for my father's funeral. I was taken to the in the hospital and the news came back that my liver had failed and I needed a liver transplant. The neighbor across the street was spreading the word I was an alcoholic and therefore killed my liver. When I found out about this I was back in Florida. My mother, who is 73, was upset but did not understand enough about my disease to straighten out the neighbor. I called my sister and asked her to set the woman straight next time she went to visit my mother. I don't know what seh said but apparently the woman never said another word! You gotta have a sense of humor... Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Wednesday, May 15, 2002 8:40 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Hi Patty, After I have “adjusted” to having AIH, and carefully explained the illness to my mother, she has started telling everyone that I have AIDS! She just doesn’t understand it and this compounds my frustration. I don’t know who she has told. If I try to explain it again to her she will say she understood the first time. Oh boy! -----Original Message-----From: J. [mailto:scott_p@...] Sent: Tuesday, May 14, 2002 10:09 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Mr. Norway (do you have a name)/? and , Mine also came on slowly. I wouldn't say I was sick, aside from deadly fatigue when I had a flare-up for at least 15 yearsafter I was diagnosed., The prednisone was worse than the disease. I never even turned yellow until 1997 and I was Dx in 1982. This is a disease that will sneak up on you. Hang in there and take care, alot of people do go into remission. This group is also a great source of info. Your experience with meat does not strike me as unusual. Livers have to work hard to process healthy meat... forget about sick meat. You will find out lots of ways to stay healthy. Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Monday, May 13, 2002 11:52 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick I had a similar experience with my AIH. I went for a routine physical in October because I had moved back home to Chicago. During last summer I noticed that my fingernails appeared orange and the whites of my eyes were yellowish. I felt fine then and was too busy to take much notice. During the physical the doctor told me that my liver enzymes were extremely elevated, 40 X normal. I felt fine, but was becoming itchy and my urine was becoming very dark. He felt I had a gallstone, so I was sent for an ultrasound of the gallbladder. It did not show a stone. He was really puzzled and sent me to a liver specialist, even tho I did not feel it was necessary and did not want to go. I was just relieved that it wasn’t a gallstone. How naïve I was. The specialist hoped that I merely contracted mono and that the liver enzymes would return to normal. Somehow, I contracted mono but never felt sick from it. How I got it I will never know, but they felt I contracted it from one of my nieces or nephews upon moving back home Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 , Yep thats me, I am still waiting... I am alot better now thanks Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Friday, May 24, 2002 9:03 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Dear Patty, Oh yes, I remember now. You had the lesion, possibly caused by the immunosuppression. I hope they find out what it is soon, and that it is not a lymphoma. What an awful experience you had in ‘97, I hope you are feeling better now. Take care, AIH ‘02 -----Original Message-----From: J. [mailto:scott_p@...] Sent: Thursday, May 23, 2002 9:01 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick , I can tell you are a relative newby, I don't mind repeating my story but don't want to gross you out... I'll tell you anyway. I had come home on September 11th, 1997 (god, I hadn't realized the date until now when I countred back). I had received a call, my father had decided to check himself out of the hospital and go home on hospice. When my mother called she had been told a max of 72 hours until he filled up with fluid as he was refusing dialysis. I made my plane reservations then called my gasteroenterologist. I knew my liver was in trouble. He told me he understood, I had to go but be careful. I came home, arriving at 2AM in time to have one last conversation with my dad before he died the next day. Anyway I could not sleep for three days, I was wandering the house. I don't recall being weird yet it was a time when weirdness was OK because everyone was zombies. Finally Mon. AM at about 5:00 I had a splitting headache and had not slept for days. It was the day of the wake and I knew I needed sleep. I took 2 advils. Within 2 hours I was vomiting mass quantities of blood. In the ER all I remember was like a TV show them running through the ER with me on a stretcher yelling move! GI bleed. That's the last I remeber for four days. I 'woke'up on Thursday in the ICU. Then I was told I needed a transplant. They kept me for about a week, I stayed another 2 weeks with my mother than back to Miami for transplant eval on Oct 10. It took two months for all the preliminary tests during which time I was in and out of the hospital. I was put on the list Dec 8, 1997 and received the call, my beeper went off Feb 23, 1998. I now have a whole different set of issues related first to technical difficulties with the hepatic artery which led to my new bile ducts disintegrating, but they rebuilt them and now I have a mysterious 'lesion' at L4 which has resulted in a vetebral fracure most likely a lymphoma due to post transplant immunosuppression. But honestly, I basically feel great! Sorry this was probably much more of an answer than you expected. Whew! I get tired listening to me! Patty[ J. ] -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Thursday, May 23, 2002 8:24 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Oh my gosh! What a blabby neighbor she is! People who don’t know much about anything are the ones that talk the most. How did you decide you needed to go to the hospital? Did you suddenly feel bad? Did you have a transplant? How are you doing? I hope very well. -----Original Message-----From: J. [mailto:scott_p@...] Sent: Wednesday, May 22, 2002 9:53 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick , I know this response is late however I have been out of town and am catching up. One of my favorites is after I went into liver failure, I happened to be at home in Mass at my mothers house. All of my brothers & sisters were home for my father's funeral. I was taken to the in the hospital and the news came back that my liver had failed and I needed a liver transplant. The neighbor across the street was spreading the word I was an alcoholic and therefore killed my liver. When I found out about this I was back in Florida. My mother, who is 73, was upset but did not understand enough about my disease to straighten out the neighbor. I called my sister and asked her to set the woman straight next time she went to visit my mother. I don't know what seh said but apparently the woman never said another word! You gotta have a sense of humor... Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Wednesday, May 15, 2002 8:40 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Hi Patty, After I have “adjusted” to having AIH, and carefully explained the illness to my mother, she has started telling everyone that I have AIDS! She just doesn’t understand it and this compounds my frustration. I don’t know who she has told. If I try to explain it again to her she will say she understood the first time. Oh boy! -----Original Message-----From: J. [mailto:scott_p@...] Sent: Tuesday, May 14, 2002 10:09 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Mr. Norway (do you have a name)/? and , Mine also came on slowly. I wouldn't say I was sick, aside from deadly fatigue when I had a flare-up for at least 15 yearsafter I was diagnosed., The prednisone was worse than the disease. I never even turned yellow until 1997 and I was Dx in 1982. This is a disease that will sneak up on you. Hang in there and take care, alot of people do go into remission. This group is also a great source of info. Your experience with meat does not strike me as unusual. Livers have to work hard to process healthy meat... forget about sick meat. You will find out lots of ways to stay healthy. Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Monday, May 13, 2002 11:52 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick I had a similar experience with my AIH. I went for a routine physical in October because I had moved back home to Chicago. During last summer I noticed that my fingernails appeared orange and the whites of my eyes were yellowish. I felt fine then and was too busy to take much notice. During the physical the doctor told me that my liver enzymes were extremely elevated, 40 X normal. I felt fine, but was becoming itchy and my urine was becoming very dark. He felt I had a gallstone, so I was sent for an ultrasound of the gallbladder. It did not show a stone. He was really puzzled and sent me to a liver specialist, even tho I did not feel it was necessary and did not want to go. I was just relieved that it wasn’t a gallstone. How naïve I was. The specialist hoped that I merely contracted mono and that the liver enzymes would return to normal. Somehow, I contracted mono but never felt sick from it. How I got it I will never know, but they felt I contracted it from one of my nieces or nephews upon moving back home Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Dear Patty, Do you think this will happen to me? AIH ‘02 [ ] I`ve got AIH but idon`t feel sick Hi!.in May 2001 I went to see the doctor because of a bad flu. He noticed my eyes were also yellow, so I had to take a blood test.It showed a liver not functioning properly. (my values was more than twice as much than normal) But the doctor could not understand what it was, so he took more blood tests and found out my liver was getting a little bit better, so he told me to wait a while and then come back. The weird thing is that I was not feeling sick at all (aside from the flu). I did come back in july and took another blood test. My doctor said that my liver was getting better and that i should wait another three months, And then check again (he said I probably would be alright by then). In august, I had to go to the army, but I was there for only three days because of my liver.(If i wanted to, I could be there, but i chose not to) When i got back i was very happy because i could start to study instead of wasting a year in the army. And all because of the liver problem wich I didn`t even notice. During this period I also did drink alcohol 1-3 times a week. And even more in the summer.. I almost forgot about my liver problem for a while and in late november I finally went to see another doctor. The new doctor immidiatly wanted me to take more tests at the hospital and was very surprised that i hadn`t done it before. He " transfered " me to a liver-specialist at the local hospital who put me on prednisolone 16. of january (this was before i got diagnosed with aih, but the doctor was almost sure it was aih so he put me on prednisolone (40mg)because my liver got worse. Around this time I was starting to have both yellow skin and eyes, and my urine was very dark.and i was perhaps feeling a bit listless. But i was still not feeling sick. Luckily I responded well to prednisolone and my liver is getting better and better. I am currently taking 15mg prednisolone and 100 mg imuran(started 9.april). What I think is bad is that I`ve had a hard time with the prednisolone, espessially my mental health is not at all what it used to be. I`ve had mood swings, get easily irritated, have sleeping problems, my memory is not at all what it used to be, And I also feel confused and sometimes stressed for no reason. I now also realize that some of my problems has gotten worse because i haven`t talked about it either.Prednisolone has also given me acne on face, neck and chest. Moonface, weight gain (10lbs.almost back to normal now..),headaches, joint pain , Stretchmarks on legs and lower back/butt(had some before prednisolone also, have much more now though). my ankles was also very swullen for a while. I`ve also noticed muscle weakness. The good thing is I`ve still not felt sick ( that means sick like having to stay in bed all day) because of my disease.In march 2001 my stomach started acting up because I ate meat in Brüssel. I remember i had these awful stomach cramps, and when i belched it TASTED like rotten egg...it was disgusting. I can also remember as long ago as in the middle of the year 2000, a friend said i was yellow in the eyes.I don`t even now how long i was yelllow in my eyes, because i can`t remember. I did not know yellow eyes was a symptom for liver disease.. I would really like to know if anyone else have experienced This kind of sneaking aih with no pain. Any Feedback on other things i mention is also very much appreciated A 20 year old male from norway Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 , I wouldn't worry about it. I didn't have ant idea what would happen to me, nor do I believe I could have done anything to prevent it (except not taking the advil). I didn't have as much knowledge about AIH as I have now. I have never heard of someone else having the same type of experiences. There are many people in this group that have done well. Just live as full and healthy and productive life as you can. It is amazing how thisngs work out. There are things you can control, like the way you maximize your health and life, and others you don't. Just be smart and you will do fine. Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Saturday, May 25, 2002 12:28 AM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Dear Patty, Do you think this will happen to me? AIH ‘02 -----Original Message-----From: J. [mailto:scott_p@...] Sent: Friday, May 24, 2002 8:51 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick , Yep thats me, I am still waiting... I am alot better now thanks Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Friday, May 24, 2002 9:03 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Dear Patty, Oh yes, I remember now. You had the lesion, possibly caused by the immunosuppression. I hope they find out what it is soon, and that it is not a lymphoma. What an awful experience you had in ‘97, I hope you are feeling better now. Take care, AIH ‘02 -----Original Message-----From: J. [mailto:scott_p@...] Sent: Thursday, May 23, 2002 9:01 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick , I can tell you are a relative newby, I don't mind repeating my story but don't want to gross you out... I'll tell you anyway. I had come home on September 11th, 1997 (god, I hadn't realized the date until now when I countred back). I had received a call, my father had decided to check himself out of the hospital and go home on hospice. When my mother called she had been told a max of 72 hours until he filled up with fluid as he was refusing dialysis. I made my plane reservations then called my gasteroenterologist. I knew my liver was in trouble. He told me he understood, I had to go but be careful. I came home, arriving at 2AM in time to have one last conversation with my dad before he died the next day. Anyway I could not sleep for three days, I was wandering the house. I don't recall being weird yet it was a time when weirdness was OK because everyone was zombies. Finally Mon. AM at about 5:00 I had a splitting headache and had not slept for days. It was the day of the wake and I knew I needed sleep. I took 2 advils. Within 2 hours I was vomiting mass quantities of blood. In the ER all I remember was like a TV show them running through the ER with me on a stretcher yelling move! GI bleed. That's the last I remeber for four days. I 'woke'up on Thursday in the ICU. Then I was told I needed a transplant. They kept me for about a week, I stayed another 2 weeks with my mother than back to Miami for transplant eval on Oct 10. It took two months for all the preliminary tests during which time I was in and out of the hospital. I was put on the list Dec 8, 1997 and received the call, my beeper went off Feb 23, 1998. I now have a whole different set of issues related first to technical difficulties with the hepatic artery which led to my new bile ducts disintegrating, but they rebuilt them and now I have a mysterious 'lesion' at L4 which has resulted in a vetebral fracure most likely a lymphoma due to post transplant immunosuppression. But honestly, I basically feel great! Sorry this was probably much more of an answer than you expected. Whew! I get tired listening to me! Patty[ J. ] -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Thursday, May 23, 2002 8:24 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Oh my gosh! What a blabby neighbor she is! People who don’t know much about anything are the ones that talk the most. How did you decide you needed to go to the hospital? Did you suddenly feel bad? Did you have a transplant? How are you doing? I hope very well. -----Original Message-----From: J. [mailto:scott_p@...] Sent: Wednesday, May 22, 2002 9:53 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick , I know this response is late however I have been out of town and am catching up. One of my favorites is after I went into liver failure, I happened to be at home in Mass at my mothers house. All of my brothers & sisters were home for my father's funeral. I was taken to the in the hospital and the news came back that my liver had failed and I needed a liver transplant. The neighbor across the street was spreading the word I was an alcoholic and therefore killed my liver. When I found out about this I was back in Florida. My mother, who is 73, was upset but did not understand enough about my disease to straighten out the neighbor. I called my sister and asked her to set the woman straight next time she went to visit my mother. I don't know what seh said but apparently the woman never said another word! You gotta have a sense of humor... Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Wednesday, May 15, 2002 8:40 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Hi Patty, After I have “adjusted” to having AIH, and carefully explained the illness to my mother, she has started telling everyone that I have AIDS! She just doesn’t understand it and this compounds my frustration. I don’t know who she has told. If I try to explain it again to her she will say she understood the first time. Oh boy! -----Original Message-----From: J. [mailto:scott_p@...] Sent: Tuesday, May 14, 2002 10:09 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick Mr. Norway (do you have a name)/? and , Mine also came on slowly. I wouldn't say I was sick, aside from deadly fatigue when I had a flare-up for at least 15 yearsafter I was diagnosed., The prednisone was worse than the disease. I never even turned yellow until 1997 and I was Dx in 1982. This is a disease that will sneak up on you. Hang in there and take care, alot of people do go into remission. This group is also a great source of info. Your experience with meat does not strike me as unusual. Livers have to work hard to process healthy meat... forget about sick meat. You will find out lots of ways to stay healthy. Patty -----Original Message-----From: lisa m skowron [mailto:lsmaxfax@...]Sent: Monday, May 13, 2002 11:52 PM Subject: RE: [ ] I`ve got AIH but idon`t feel sick I had a similar experience with my AIH. I went for a routine physical in October because I had moved back home to Chicago. During last summer I noticed that my fingernails appeared orange and the whites of my eyes were yellowish. I felt fine then and was too busy to take much notice. During the physical the doctor told me that my liver enzymes were extremely elevated, 40 X normal. I felt fine, but was becoming itchy and my urine was becoming very dark. He felt I had a gallstone, so I was sent for an ultrasound of the gallbladder. It did not show a stone. He was really puzzled and sent me to a liver specialist, even tho I did not feel it was necessary and did not want to go. I was just relieved that it wasn’t a gallstone. How naïve I was. The specialist hoped that I merely contracted mono and that the liver enzymes would return to normal. Somehow, I contracted mono but never felt sick from it. How I got it I will never know, but they felt I contracted it from one of my nieces or nephews upon moving back home Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Dear Patty, Thanks so much for your wonderful kind words. I am so glad I asked you. I feel like I’ve been set free from the fear of AIH! You’re right. I will do just fine. I hope you are too. Now I’m off to sweet dreams! AIH ‘02 [ ] I`ve got AIH but idon`t feel sick Hi!.in May 2001 I went to see the doctor because of a bad flu. He noticed my eyes were also yellow, so I had to take a blood test.It showed a liver not functioning properly. (my values was more than twice as much than normal) But the doctor could not understand what it was, so he took more blood tests and found out my liver was getting a little bit better, so he told me to wait a while and then come back. The weird thing is that I was not feeling sick at all (aside from the flu). I did come back in july and took another blood test. My doctor said that my liver was getting better and that i should wait another three months, And then check again (he said I probably would be alright by then). In august, I had to go to the army, but I was there for only three days because of my liver.(If i wanted to, I could be there, but i chose not to) When i got back i was very happy because i could start to study instead of wasting a year in the army. And all because of the liver problem wich I didn`t even notice. During this period I also did drink alcohol 1-3 times a week. And even more in the summer.. I almost forgot about my liver problem for a while and in late november I finally went to see another doctor. The new doctor immidiatly wanted me to take more tests at the hospital and was very surprised that i hadn`t done it before. He " transfered " me to a liver-specialist at the local hospital who put me on prednisolone 16. of january (this was before i got diagnosed with aih, but the doctor was almost sure it was aih so he put me on prednisolone (40mg)because my liver got worse. Around this time I was starting to have both yellow skin and eyes, and my urine was very dark.and i was perhaps feeling a bit listless. But i was still not feeling sick. Luckily I responded well to prednisolone and my liver is getting better and better. I am currently taking 15mg prednisolone and 100 mg imuran(started 9.april). What I think is bad is that I`ve had a hard time with the prednisolone, espessially my mental health is not at all what it used to be. I`ve had mood swings, get easily irritated, have sleeping problems, my memory is not at all what it used to be, And I also feel confused and sometimes stressed for no reason. I now also realize that some of my problems has gotten worse because i haven`t talked about it either.Prednisolone has also given me acne on face, neck and chest. Moonface, weight gain (10lbs.almost back to normal now..),headaches, joint pain , Stretchmarks on legs and lower back/butt(had some before prednisolone also, have much more now though). my ankles was also very swullen for a while. I`ve also noticed muscle weakness. The good thing is I`ve still not felt sick ( that means sick like having to stay in bed all day) because of my disease.In march 2001 my stomach started acting up because I ate meat in Brüssel. I remember i had these awful stomach cramps, and when i belched it TASTED like rotten egg...it was disgusting. I can also remember as long ago as in the middle of the year 2000, a friend said i was yellow in the eyes.I don`t even now how long i was yelllow in my eyes, because i can`t remember. I did not know yellow eyes was a symptom for liver disease.. I would really like to know if anyone else have experienced This kind of sneaking aih with no pain. Any Feedback on other things i mention is also very much appreciated A 20 year old male from norway Quote Link to comment Share on other sites More sharing options...
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