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Liver Trouble Anyone?
- Thread starter kristenb
- Start date
crickit715
New member
when my daughter was one she started showing severely elevated alt, ast and alk phos. enzyme levels when her blood work came back, but she showed no outward signs of liver disease. the doc put her on ursodiol 2x a day and this has stablized the numbers (although they are still a bit high)..and checks her every 6 months. he tells me to report any pain or swelling in the area of the liver and watch for any jaundice. so far that has been our experience! <img src="i/expressions/face-icon-small-smile.gif" border="0">
crickit715
New member
when my daughter was one she started showing severely elevated alt, ast and alk phos. enzyme levels when her blood work came back, but she showed no outward signs of liver disease. the doc put her on ursodiol 2x a day and this has stablized the numbers (although they are still a bit high)..and checks her every 6 months. he tells me to report any pain or swelling in the area of the liver and watch for any jaundice. so far that has been our experience! <img src="i/expressions/face-icon-small-smile.gif" border="0">
crickit715
New member
when my daughter was one she started showing severely elevated alt, ast and alk phos. enzyme levels when her blood work came back, but she showed no outward signs of liver disease. the doc put her on ursodiol 2x a day and this has stablized the numbers (although they are still a bit high)..and checks her every 6 months. he tells me to report any pain or swelling in the area of the liver and watch for any jaundice. so far that has been our experience! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I do an I am on ursodiol 4X a day and i got for routine ultra sounds of my liver/spleen. I also have endoscopys of my stomach mostly my liver and biopsies of my liver as well. Routine blood tests keep my number in check and clinic visits. My numbers are high though and have gone up significantly over the years-I have been told I have cirrhosis.
Hope this helps....I do know a girl that did have a transplant because she went into liver failure due to the CF. I do not know how common that is though.
Hope this helps....I do know a girl that did have a transplant because she went into liver failure due to the CF. I do not know how common that is though.
I do an I am on ursodiol 4X a day and i got for routine ultra sounds of my liver/spleen. I also have endoscopys of my stomach mostly my liver and biopsies of my liver as well. Routine blood tests keep my number in check and clinic visits. My numbers are high though and have gone up significantly over the years-I have been told I have cirrhosis.
Hope this helps....I do know a girl that did have a transplant because she went into liver failure due to the CF. I do not know how common that is though.
Hope this helps....I do know a girl that did have a transplant because she went into liver failure due to the CF. I do not know how common that is though.
I do an I am on ursodiol 4X a day and i got for routine ultra sounds of my liver/spleen. I also have endoscopys of my stomach mostly my liver and biopsies of my liver as well. Routine blood tests keep my number in check and clinic visits. My numbers are high though and have gone up significantly over the years-I have been told I have cirrhosis.
<br />Hope this helps....I do know a girl that did have a transplant because she went into liver failure due to the CF. I do not know how common that is though.
<br />Hope this helps....I do know a girl that did have a transplant because she went into liver failure due to the CF. I do not know how common that is though.
Hi Kristen, my daughter was diagnosed with cf related liver disease at the same time as she was diagnosed with cf. She had a late diagnosis. (9 years old) Her only symptoms were enlarged liver and spleen. No pain or discomfort, althought her liver numbers were higher than normal but not horribly. She had an ultrasound and biopsy. She did have some cirrhosis and the beginnings of varices (enlarged veins in the esophagus). Her GI put her on usrodiol and propranalol and continued to monitor her. Her numbers improved and almost 2 years later are continuing to improve (knock wood). It went from very frightening to a manageable condition. She still needs a yearly ultasound and sees her GI twice a year but he's happy with her progress as are we.
Hi Kristen, my daughter was diagnosed with cf related liver disease at the same time as she was diagnosed with cf. She had a late diagnosis. (9 years old) Her only symptoms were enlarged liver and spleen. No pain or discomfort, althought her liver numbers were higher than normal but not horribly. She had an ultrasound and biopsy. She did have some cirrhosis and the beginnings of varices (enlarged veins in the esophagus). Her GI put her on usrodiol and propranalol and continued to monitor her. Her numbers improved and almost 2 years later are continuing to improve (knock wood). It went from very frightening to a manageable condition. She still needs a yearly ultasound and sees her GI twice a year but he's happy with her progress as are we.
Hi Kristen, my daughter was diagnosed with cf related liver disease at the same time as she was diagnosed with cf. She had a late diagnosis. (9 years old) Her only symptoms were enlarged liver and spleen. No pain or discomfort, althought her liver numbers were higher than normal but not horribly. She had an ultrasound and biopsy. She did have some cirrhosis and the beginnings of varices (enlarged veins in the esophagus). Her GI put her on usrodiol and propranalol and continued to monitor her. Her numbers improved and almost 2 years later are continuing to improve (knock wood). It went from very frightening to a manageable condition. She still needs a yearly ultasound and sees her GI twice a year but he's happy with her progress as are we.
stillkicking
New member
I was diagnosed as a kid with cirrhosis after a liver biopsy. I've had high liver enzymes my whole life. They thought it was hepitits until the biopsy. I check my liver enzymes with regular blood tests. I was on actigal for a while as a kid and that helped some back then. My symptoms have always been intense pain in that area. It feels like someone is punching you in the gut as hard as they can, but only on that side. Some nights, if I roll over on that side while I'm sleeping I get woken up with the pain. I've read that liver problems occur in about 5% of patients with CF, though I've actually heard of quite a few liver/lung transplants, so it seems to be more common than I originally thought. I've also found that my really hard and long lasting coughing fits, start causing my liver to hurt. It seems it can't take all the pounding. It's tender to the touch, and doesn't respond well to jolts.
stillkicking
New member
I was diagnosed as a kid with cirrhosis after a liver biopsy. I've had high liver enzymes my whole life. They thought it was hepitits until the biopsy. I check my liver enzymes with regular blood tests. I was on actigal for a while as a kid and that helped some back then. My symptoms have always been intense pain in that area. It feels like someone is punching you in the gut as hard as they can, but only on that side. Some nights, if I roll over on that side while I'm sleeping I get woken up with the pain. I've read that liver problems occur in about 5% of patients with CF, though I've actually heard of quite a few liver/lung transplants, so it seems to be more common than I originally thought. I've also found that my really hard and long lasting coughing fits, start causing my liver to hurt. It seems it can't take all the pounding. It's tender to the touch, and doesn't respond well to jolts.
stillkicking
New member
I was diagnosed as a kid with cirrhosis after a liver biopsy. I've had high liver enzymes my whole life. They thought it was hepitits until the biopsy. I check my liver enzymes with regular blood tests. I was on actigal for a while as a kid and that helped some back then. My symptoms have always been intense pain in that area. It feels like someone is punching you in the gut as hard as they can, but only on that side. Some nights, if I roll over on that side while I'm sleeping I get woken up with the pain. I've read that liver problems occur in about 5% of patients with CF, though I've actually heard of quite a few liver/lung transplants, so it seems to be more common than I originally thought. I've also found that my really hard and long lasting coughing fits, start causing my liver to hurt. It seems it can't take all the pounding. It's tender to the touch, and doesn't respond well to jolts.
Hi Kristen,
I don't remember the specifics of testing and such because I was about 12 or 13 when the doctor dx me with liver disease. I know that I was told that my symptoms were an enlarged liver and spleen so they told me I had to stop playing contact sports <img src="i/expressions/face-icon-small-sad.gif" border="0"> He put me on Ursodil 300 mg 2x/daily which stabilized my liver enzyme levels and I haven't had the need to adjust it even now that I'm 25. Some other side effects that come with the enlarged spleen and liver are verices that form from blood being backed up between the two organs. I see a liver specialist and gastroenterologist who keep tabs on the verices to make sure they don't get too large or need banding. So far so good.
I agree with stillkicking though, sometimes I think coughing fits can hurt us a little extra because there's so much jolting. I always get pain there in those circumstances.
I don't remember the specifics of testing and such because I was about 12 or 13 when the doctor dx me with liver disease. I know that I was told that my symptoms were an enlarged liver and spleen so they told me I had to stop playing contact sports <img src="i/expressions/face-icon-small-sad.gif" border="0"> He put me on Ursodil 300 mg 2x/daily which stabilized my liver enzyme levels and I haven't had the need to adjust it even now that I'm 25. Some other side effects that come with the enlarged spleen and liver are verices that form from blood being backed up between the two organs. I see a liver specialist and gastroenterologist who keep tabs on the verices to make sure they don't get too large or need banding. So far so good.
I agree with stillkicking though, sometimes I think coughing fits can hurt us a little extra because there's so much jolting. I always get pain there in those circumstances.
Hi Kristen,
I don't remember the specifics of testing and such because I was about 12 or 13 when the doctor dx me with liver disease. I know that I was told that my symptoms were an enlarged liver and spleen so they told me I had to stop playing contact sports <img src="i/expressions/face-icon-small-sad.gif" border="0"> He put me on Ursodil 300 mg 2x/daily which stabilized my liver enzyme levels and I haven't had the need to adjust it even now that I'm 25. Some other side effects that come with the enlarged spleen and liver are verices that form from blood being backed up between the two organs. I see a liver specialist and gastroenterologist who keep tabs on the verices to make sure they don't get too large or need banding. So far so good.
I agree with stillkicking though, sometimes I think coughing fits can hurt us a little extra because there's so much jolting. I always get pain there in those circumstances.
I don't remember the specifics of testing and such because I was about 12 or 13 when the doctor dx me with liver disease. I know that I was told that my symptoms were an enlarged liver and spleen so they told me I had to stop playing contact sports <img src="i/expressions/face-icon-small-sad.gif" border="0"> He put me on Ursodil 300 mg 2x/daily which stabilized my liver enzyme levels and I haven't had the need to adjust it even now that I'm 25. Some other side effects that come with the enlarged spleen and liver are verices that form from blood being backed up between the two organs. I see a liver specialist and gastroenterologist who keep tabs on the verices to make sure they don't get too large or need banding. So far so good.
I agree with stillkicking though, sometimes I think coughing fits can hurt us a little extra because there's so much jolting. I always get pain there in those circumstances.
Hi Kristen,
<br />
<br />I don't remember the specifics of testing and such because I was about 12 or 13 when the doctor dx me with liver disease. I know that I was told that my symptoms were an enlarged liver and spleen so they told me I had to stop playing contact sports <img src="i/expressions/face-icon-small-sad.gif" border="0"> He put me on Ursodil 300 mg 2x/daily which stabilized my liver enzyme levels and I haven't had the need to adjust it even now that I'm 25. Some other side effects that come with the enlarged spleen and liver are verices that form from blood being backed up between the two organs. I see a liver specialist and gastroenterologist who keep tabs on the verices to make sure they don't get too large or need banding. So far so good.
<br />
<br />I agree with stillkicking though, sometimes I think coughing fits can hurt us a little extra because there's so much jolting. I always get pain there in those circumstances.
<br />
<br />I don't remember the specifics of testing and such because I was about 12 or 13 when the doctor dx me with liver disease. I know that I was told that my symptoms were an enlarged liver and spleen so they told me I had to stop playing contact sports <img src="i/expressions/face-icon-small-sad.gif" border="0"> He put me on Ursodil 300 mg 2x/daily which stabilized my liver enzyme levels and I haven't had the need to adjust it even now that I'm 25. Some other side effects that come with the enlarged spleen and liver are verices that form from blood being backed up between the two organs. I see a liver specialist and gastroenterologist who keep tabs on the verices to make sure they don't get too large or need banding. So far so good.
<br />
<br />I agree with stillkicking though, sometimes I think coughing fits can hurt us a little extra because there's so much jolting. I always get pain there in those circumstances.
Wow, thank you to everyone that responded! I've only been on this site for a couple of weeks and it's nice to know that there are people out there listening.
Your information is really helpful. I've begun to have very slightly elevated liver enzymes (on two occassions only) but really, I'm more concerned about the extreme distention that is going on in my abdomen and the blood that I'm coughing up that doesn't ever seem to be coming from my lungs--it's like it's coming from by throat or something because it takes absolutely no effort (kind of like I just clear my throat) to get it up...anyhow, i worry about esphogeal varices (as that can be a liver disease sign)....I have mentioned to to the doctors but they say everything is fine in the liver department so far. It's just, without being disrespectful, I have been known to be aware of what is going on with me body before they do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As I read each one of your stories one word came to mind: troopers! What absolute troopers you all are! Thanks for reminding me to continue to be a trooper even when things don't seem to be going well. Thanks so much for your input. Every single one of you are in my thoughts.
Your information is really helpful. I've begun to have very slightly elevated liver enzymes (on two occassions only) but really, I'm more concerned about the extreme distention that is going on in my abdomen and the blood that I'm coughing up that doesn't ever seem to be coming from my lungs--it's like it's coming from by throat or something because it takes absolutely no effort (kind of like I just clear my throat) to get it up...anyhow, i worry about esphogeal varices (as that can be a liver disease sign)....I have mentioned to to the doctors but they say everything is fine in the liver department so far. It's just, without being disrespectful, I have been known to be aware of what is going on with me body before they do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As I read each one of your stories one word came to mind: troopers! What absolute troopers you all are! Thanks for reminding me to continue to be a trooper even when things don't seem to be going well. Thanks so much for your input. Every single one of you are in my thoughts.
Wow, thank you to everyone that responded! I've only been on this site for a couple of weeks and it's nice to know that there are people out there listening.
Your information is really helpful. I've begun to have very slightly elevated liver enzymes (on two occassions only) but really, I'm more concerned about the extreme distention that is going on in my abdomen and the blood that I'm coughing up that doesn't ever seem to be coming from my lungs--it's like it's coming from by throat or something because it takes absolutely no effort (kind of like I just clear my throat) to get it up...anyhow, i worry about esphogeal varices (as that can be a liver disease sign)....I have mentioned to to the doctors but they say everything is fine in the liver department so far. It's just, without being disrespectful, I have been known to be aware of what is going on with me body before they do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As I read each one of your stories one word came to mind: troopers! What absolute troopers you all are! Thanks for reminding me to continue to be a trooper even when things don't seem to be going well. Thanks so much for your input. Every single one of you are in my thoughts.
Your information is really helpful. I've begun to have very slightly elevated liver enzymes (on two occassions only) but really, I'm more concerned about the extreme distention that is going on in my abdomen and the blood that I'm coughing up that doesn't ever seem to be coming from my lungs--it's like it's coming from by throat or something because it takes absolutely no effort (kind of like I just clear my throat) to get it up...anyhow, i worry about esphogeal varices (as that can be a liver disease sign)....I have mentioned to to the doctors but they say everything is fine in the liver department so far. It's just, without being disrespectful, I have been known to be aware of what is going on with me body before they do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As I read each one of your stories one word came to mind: troopers! What absolute troopers you all are! Thanks for reminding me to continue to be a trooper even when things don't seem to be going well. Thanks so much for your input. Every single one of you are in my thoughts.