fibrosis of the liver aka liver disease

[jacksmom]

Hi everyone,
For a little back ground my son was born with Meconium Ileus and was in the hospital for the first 4 ½ months of life. He had a total of five surgeries. His last surgery was to put in a g-tube and do a liver biopsy. The liver biopsy showed that Jack's bile ducts were block with bile (like his meconium was) and thankfully the surgeon was able to clean them out. We were told that his liver would make a complete recover. I also want to add that his bilirubin peaked at 25 and he also almost bleed out after that last surgery. FYI Cutting into the liver and a heparin drip for a central line does not mix very well.
So we go to our last clinic appointment and the GI doc wants another ultrasound of Jack's liver. It didn't concern me to much because last July/August we had a lot of liver test done because an ultrasound saw a mass in his liver. It turned out to be nothing. The ultrasound and CT scan saw something but the MRI showed nothing. Inflammation was the most probable cause.
I found out after the fact that the ultrasound was ordered because Jack's spleen was enlarged indicating that blood was being diverted around the liver. I called later that day to find out the results and we get the news that Jack's liver has increased scaring, it is not very bad now but has the potential to become a real stinker. (The doctor's exact words)
Jack was put back on Ursodiol and now it is a wait and see kind of game. Jack was on Urso when he was in the hospital but was taken off before we came home. I wish the GI doc would have put Jack back on it last summer when they were concerned about the liver mass...but I guess hind sight is 20/20.
So we go back to clinic in three weeks and this is the first time I have been really nervous and scared about it. I know that if another ultrasound gets ordered that there are signed indicating something is worse. Currently the doctor ordered an ultrasound and labs every six months.
I have looked all over the internet about liver disease relating to cystic fibrosis but haven't come across any specific information on what to expect.
I was hoping someone here might have information or may know where to find any information.

Thanks,
Carey

 

[jacksmom]

Hi everyone,
For a little back ground my son was born with Meconium Ileus and was in the hospital for the first 4 ½ months of life. He had a total of five surgeries. His last surgery was to put in a g-tube and do a liver biopsy. The liver biopsy showed that Jack's bile ducts were block with bile (like his meconium was) and thankfully the surgeon was able to clean them out. We were told that his liver would make a complete recover. I also want to add that his bilirubin peaked at 25 and he also almost bleed out after that last surgery. FYI Cutting into the liver and a heparin drip for a central line does not mix very well.
So we go to our last clinic appointment and the GI doc wants another ultrasound of Jack's liver. It didn't concern me to much because last July/August we had a lot of liver test done because an ultrasound saw a mass in his liver. It turned out to be nothing. The ultrasound and CT scan saw something but the MRI showed nothing. Inflammation was the most probable cause.
I found out after the fact that the ultrasound was ordered because Jack's spleen was enlarged indicating that blood was being diverted around the liver. I called later that day to find out the results and we get the news that Jack's liver has increased scaring, it is not very bad now but has the potential to become a real stinker. (The doctor's exact words)
Jack was put back on Ursodiol and now it is a wait and see kind of game. Jack was on Urso when he was in the hospital but was taken off before we came home. I wish the GI doc would have put Jack back on it last summer when they were concerned about the liver mass...but I guess hind sight is 20/20.
So we go back to clinic in three weeks and this is the first time I have been really nervous and scared about it. I know that if another ultrasound gets ordered that there are signed indicating something is worse. Currently the doctor ordered an ultrasound and labs every six months.
I have looked all over the internet about liver disease relating to cystic fibrosis but haven't come across any specific information on what to expect.
I was hoping someone here might have information or may know where to find any information.

Thanks,
Carey

 

[jacksmom]

Hi everyone,
For a little back ground my son was born with Meconium Ileus and was in the hospital for the first 4 ½ months of life. He had a total of five surgeries. His last surgery was to put in a g-tube and do a liver biopsy. The liver biopsy showed that Jack's bile ducts were block with bile (like his meconium was) and thankfully the surgeon was able to clean them out. We were told that his liver would make a complete recover. I also want to add that his bilirubin peaked at 25 and he also almost bleed out after that last surgery. FYI Cutting into the liver and a heparin drip for a central line does not mix very well.
So we go to our last clinic appointment and the GI doc wants another ultrasound of Jack's liver. It didn't concern me to much because last July/August we had a lot of liver test done because an ultrasound saw a mass in his liver. It turned out to be nothing. The ultrasound and CT scan saw something but the MRI showed nothing. Inflammation was the most probable cause.
I found out after the fact that the ultrasound was ordered because Jack's spleen was enlarged indicating that blood was being diverted around the liver. I called later that day to find out the results and we get the news that Jack's liver has increased scaring, it is not very bad now but has the potential to become a real stinker. (The doctor's exact words)
Jack was put back on Ursodiol and now it is a wait and see kind of game. Jack was on Urso when he was in the hospital but was taken off before we came home. I wish the GI doc would have put Jack back on it last summer when they were concerned about the liver mass...but I guess hind sight is 20/20.
So we go back to clinic in three weeks and this is the first time I have been really nervous and scared about it. I know that if another ultrasound gets ordered that there are signed indicating something is worse. Currently the doctor ordered an ultrasound and labs every six months.
I have looked all over the internet about liver disease relating to cystic fibrosis but haven't come across any specific information on what to expect.
I was hoping someone here might have information or may know where to find any information.

Thanks,
Carey

 

[jacksmom]

Hi everyone,
For a little back ground my son was born with Meconium Ileus and was in the hospital for the first 4 ½ months of life. He had a total of five surgeries. His last surgery was to put in a g-tube and do a liver biopsy. The liver biopsy showed that Jack's bile ducts were block with bile (like his meconium was) and thankfully the surgeon was able to clean them out. We were told that his liver would make a complete recover. I also want to add that his bilirubin peaked at 25 and he also almost bleed out after that last surgery. FYI Cutting into the liver and a heparin drip for a central line does not mix very well.
So we go to our last clinic appointment and the GI doc wants another ultrasound of Jack's liver. It didn't concern me to much because last July/August we had a lot of liver test done because an ultrasound saw a mass in his liver. It turned out to be nothing. The ultrasound and CT scan saw something but the MRI showed nothing. Inflammation was the most probable cause.
I found out after the fact that the ultrasound was ordered because Jack's spleen was enlarged indicating that blood was being diverted around the liver. I called later that day to find out the results and we get the news that Jack's liver has increased scaring, it is not very bad now but has the potential to become a real stinker. (The doctor's exact words)
Jack was put back on Ursodiol and now it is a wait and see kind of game. Jack was on Urso when he was in the hospital but was taken off before we came home. I wish the GI doc would have put Jack back on it last summer when they were concerned about the liver mass...but I guess hind sight is 20/20.
So we go back to clinic in three weeks and this is the first time I have been really nervous and scared about it. I know that if another ultrasound gets ordered that there are signed indicating something is worse. Currently the doctor ordered an ultrasound and labs every six months.
I have looked all over the internet about liver disease relating to cystic fibrosis but haven't come across any specific information on what to expect.
I was hoping someone here might have information or may know where to find any information.

Thanks,
Carey

 

[jacksmom]

Hi everyone,
<br />For a little back ground my son was born with Meconium Ileus and was in the hospital for the first 4 ½ months of life. He had a total of five surgeries. His last surgery was to put in a g-tube and do a liver biopsy. The liver biopsy showed that Jack's bile ducts were block with bile (like his meconium was) and thankfully the surgeon was able to clean them out. We were told that his liver would make a complete recover. I also want to add that his bilirubin peaked at 25 and he also almost bleed out after that last surgery. FYI Cutting into the liver and a heparin drip for a central line does not mix very well.
<br />So we go to our last clinic appointment and the GI doc wants another ultrasound of Jack's liver. It didn't concern me to much because last July/August we had a lot of liver test done because an ultrasound saw a mass in his liver. It turned out to be nothing. The ultrasound and CT scan saw something but the MRI showed nothing. Inflammation was the most probable cause.
<br />I found out after the fact that the ultrasound was ordered because Jack's spleen was enlarged indicating that blood was being diverted around the liver. I called later that day to find out the results and we get the news that Jack's liver has increased scaring, it is not very bad now but has the potential to become a real stinker. (The doctor's exact words)
<br />Jack was put back on Ursodiol and now it is a wait and see kind of game. Jack was on Urso when he was in the hospital but was taken off before we came home. I wish the GI doc would have put Jack back on it last summer when they were concerned about the liver mass...but I guess hind sight is 20/20.
<br />So we go back to clinic in three weeks and this is the first time I have been really nervous and scared about it. I know that if another ultrasound gets ordered that there are signed indicating something is worse. Currently the doctor ordered an ultrasound and labs every six months.
<br />I have looked all over the internet about liver disease relating to cystic fibrosis but haven't come across any specific information on what to expect.
<br />I was hoping someone here might have information or may know where to find any information.
<br />
<br />Thanks,
<br />Carey
<br />

 

[TestifyToLove]

Well, I don't know that I can tell you what to expect. But, our son does have liver involvement in his CF as well as spleen impact at this point.

In fact, DH and I just met with the Liver Transplant team as one of our consults for this current hospitalization. At this hospital, they evidentally get you started and managed by the Liver Team as soon as they know there's a problem and they follow the liver patients for life.

Our son was on Actigall but it was discontinued at least a year ago because he had continued diarrhea (the diarrhea predated the medication but they suddenly wanted to see if stopping would stop the diarrhea). He had a liver biopsy last May which showed fibrosis consistent with CF. And, his last liver enzymes were last summer and were elevated but had not increased since the last time they were done.

We just adopted him a month ago, and we transferred his care to an entirely new CF team. They don't seem content with the lack of attention and aggression given to his liver complications in the past. So, we don't fully know what the future holds on this front.

We have been told to expect a liver transplant at some point. We have been told that his liver involvement is the biggest wrench in managing his CF and will remain so. We have also been told that approximately 10-12% of CFers eventually have liver involvement but for some reason Hispanics (of which our son is) experience 50% liver involvement with their CF.

As with all of his other CF issues, I am much happier to know that someone is aggressively paying attention to his liver issues now. But, I can't tell you what the future holds. The Liver Team Director said we have to start with a huge list of tests before we can figure out where we're going from here with his issues.

 

[TestifyToLove]

Well, I don't know that I can tell you what to expect. But, our son does have liver involvement in his CF as well as spleen impact at this point.

In fact, DH and I just met with the Liver Transplant team as one of our consults for this current hospitalization. At this hospital, they evidentally get you started and managed by the Liver Team as soon as they know there's a problem and they follow the liver patients for life.

Our son was on Actigall but it was discontinued at least a year ago because he had continued diarrhea (the diarrhea predated the medication but they suddenly wanted to see if stopping would stop the diarrhea). He had a liver biopsy last May which showed fibrosis consistent with CF. And, his last liver enzymes were last summer and were elevated but had not increased since the last time they were done.

We just adopted him a month ago, and we transferred his care to an entirely new CF team. They don't seem content with the lack of attention and aggression given to his liver complications in the past. So, we don't fully know what the future holds on this front.

We have been told to expect a liver transplant at some point. We have been told that his liver involvement is the biggest wrench in managing his CF and will remain so. We have also been told that approximately 10-12% of CFers eventually have liver involvement but for some reason Hispanics (of which our son is) experience 50% liver involvement with their CF.

As with all of his other CF issues, I am much happier to know that someone is aggressively paying attention to his liver issues now. But, I can't tell you what the future holds. The Liver Team Director said we have to start with a huge list of tests before we can figure out where we're going from here with his issues.

 

[TestifyToLove]

Well, I don't know that I can tell you what to expect. But, our son does have liver involvement in his CF as well as spleen impact at this point.

In fact, DH and I just met with the Liver Transplant team as one of our consults for this current hospitalization. At this hospital, they evidentally get you started and managed by the Liver Team as soon as they know there's a problem and they follow the liver patients for life.

Our son was on Actigall but it was discontinued at least a year ago because he had continued diarrhea (the diarrhea predated the medication but they suddenly wanted to see if stopping would stop the diarrhea). He had a liver biopsy last May which showed fibrosis consistent with CF. And, his last liver enzymes were last summer and were elevated but had not increased since the last time they were done.

We just adopted him a month ago, and we transferred his care to an entirely new CF team. They don't seem content with the lack of attention and aggression given to his liver complications in the past. So, we don't fully know what the future holds on this front.

We have been told to expect a liver transplant at some point. We have been told that his liver involvement is the biggest wrench in managing his CF and will remain so. We have also been told that approximately 10-12% of CFers eventually have liver involvement but for some reason Hispanics (of which our son is) experience 50% liver involvement with their CF.

As with all of his other CF issues, I am much happier to know that someone is aggressively paying attention to his liver issues now. But, I can't tell you what the future holds. The Liver Team Director said we have to start with a huge list of tests before we can figure out where we're going from here with his issues.

 

[TestifyToLove]

Well, I don't know that I can tell you what to expect. But, our son does have liver involvement in his CF as well as spleen impact at this point.

In fact, DH and I just met with the Liver Transplant team as one of our consults for this current hospitalization. At this hospital, they evidentally get you started and managed by the Liver Team as soon as they know there's a problem and they follow the liver patients for life.

Our son was on Actigall but it was discontinued at least a year ago because he had continued diarrhea (the diarrhea predated the medication but they suddenly wanted to see if stopping would stop the diarrhea). He had a liver biopsy last May which showed fibrosis consistent with CF. And, his last liver enzymes were last summer and were elevated but had not increased since the last time they were done.

We just adopted him a month ago, and we transferred his care to an entirely new CF team. They don't seem content with the lack of attention and aggression given to his liver complications in the past. So, we don't fully know what the future holds on this front.

We have been told to expect a liver transplant at some point. We have been told that his liver involvement is the biggest wrench in managing his CF and will remain so. We have also been told that approximately 10-12% of CFers eventually have liver involvement but for some reason Hispanics (of which our son is) experience 50% liver involvement with their CF.

As with all of his other CF issues, I am much happier to know that someone is aggressively paying attention to his liver issues now. But, I can't tell you what the future holds. The Liver Team Director said we have to start with a huge list of tests before we can figure out where we're going from here with his issues.

 

[TestifyToLove]

Well, I don't know that I can tell you what to expect. But, our son does have liver involvement in his CF as well as spleen impact at this point.
<br />
<br />In fact, DH and I just met with the Liver Transplant team as one of our consults for this current hospitalization. At this hospital, they evidentally get you started and managed by the Liver Team as soon as they know there's a problem and they follow the liver patients for life.
<br />
<br />Our son was on Actigall but it was discontinued at least a year ago because he had continued diarrhea (the diarrhea predated the medication but they suddenly wanted to see if stopping would stop the diarrhea). He had a liver biopsy last May which showed fibrosis consistent with CF. And, his last liver enzymes were last summer and were elevated but had not increased since the last time they were done.
<br />
<br />We just adopted him a month ago, and we transferred his care to an entirely new CF team. They don't seem content with the lack of attention and aggression given to his liver complications in the past. So, we don't fully know what the future holds on this front.
<br />
<br />We have been told to expect a liver transplant at some point. We have been told that his liver involvement is the biggest wrench in managing his CF and will remain so. We have also been told that approximately 10-12% of CFers eventually have liver involvement but for some reason Hispanics (of which our son is) experience 50% liver involvement with their CF.
<br />
<br />As with all of his other CF issues, I am much happier to know that someone is aggressively paying attention to his liver issues now. But, I can't tell you what the future holds. The Liver Team Director said we have to start with a huge list of tests before we can figure out where we're going from here with his issues.

 

[jacksmom]

Hi, thanks so much for responding.
I am sorry to hear that your son is having liver problems also.
It sounds like you have a great team working with you. Honestly...I'm a little jelous. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The GI side of our cf team leaves a lot to be desired.

 

[jacksmom]

Hi, thanks so much for responding.
I am sorry to hear that your son is having liver problems also.
It sounds like you have a great team working with you. Honestly...I'm a little jelous. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The GI side of our cf team leaves a lot to be desired.

 

[jacksmom]

Hi, thanks so much for responding.
I am sorry to hear that your son is having liver problems also.
It sounds like you have a great team working with you. Honestly...I'm a little jelous. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The GI side of our cf team leaves a lot to be desired.

 

[jacksmom]

Hi, thanks so much for responding.
I am sorry to hear that your son is having liver problems also.
It sounds like you have a great team working with you. Honestly...I'm a little jelous. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The GI side of our cf team leaves a lot to be desired.

 

[jacksmom]

Hi, thanks so much for responding.
<br />I am sorry to hear that your son is having liver problems also.
<br />It sounds like you have a great team working with you. Honestly...I'm a little jelous. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The GI side of our cf team leaves a lot to be desired.
<br />