Liver Problems??

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karenanne99

New member
Hi, I am Karen. I am 18 with Cf. I was just curious to know if
anyone else has been told they have liver problems that are
associated with their cf and if it has been diagnosed? About a year
ago they told me a have a serious problem with my liver and they
put me on pills for cholestatic liver disease called URSODIOL...
Anyone have any idea about any of this?? Some of my doctors are
telling me it is very serious while others say it is nothing.
 
K

karenanne99

New member
Hi, I am Karen. I am 18 with Cf. I was just curious to know if
anyone else has been told they have liver problems that are
associated with their cf and if it has been diagnosed? About a year
ago they told me a have a serious problem with my liver and they
put me on pills for cholestatic liver disease called URSODIOL...
Anyone have any idea about any of this?? Some of my doctors are
telling me it is very serious while others say it is nothing.
 
K

karenanne99

New member
Hi, I am Karen. I am 18 with Cf. I was just curious to know if
anyone else has been told they have liver problems that are
associated with their cf and if it has been diagnosed? About a year
ago they told me a have a serious problem with my liver and they
put me on pills for cholestatic liver disease called URSODIOL...
Anyone have any idea about any of this?? Some of my doctors are
telling me it is very serious while others say it is nothing.
 
K

ktsmom

New member
My daughter was diagnosed about 2 1/2 months ago; her initial bloodwork showed a slightly elevated AST liver enzyme count. They put her on Ursodiol 3 ml twice a day (they have to mix it special; she can't swallow pills).

I expressed to our doc that I was REALLY worried about the fact that her liver was involved but he said 20% of CF patients have a liver complication, and not to worry.

So that's what I know. Good luck to you!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
My daughter was diagnosed about 2 1/2 months ago; her initial bloodwork showed a slightly elevated AST liver enzyme count. They put her on Ursodiol 3 ml twice a day (they have to mix it special; she can't swallow pills).

I expressed to our doc that I was REALLY worried about the fact that her liver was involved but he said 20% of CF patients have a liver complication, and not to worry.

So that's what I know. Good luck to you!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
My daughter was diagnosed about 2 1/2 months ago; her initial bloodwork showed a slightly elevated AST liver enzyme count. They put her on Ursodiol 3 ml twice a day (they have to mix it special; she can't swallow pills).

I expressed to our doc that I was REALLY worried about the fact that her liver was involved but he said 20% of CF patients have a liver complication, and not to worry.

So that's what I know. Good luck to you!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
C

chipie12

New member
I have a 11 year old with liver damage(cirrohis). He too takes URSO. He takes 3 250mg tablets a day. His liver is so enlarged his spleen is swollen and his belly sticks out. We have been to specialists in Childrens Hospital of Philadelphia, and recently a liver transplant team, and they said it is not necessary for him to be on a transplant list yet. They told us that, they're not exactlly sure why, but people with CF can live with their liver like this for a very long time. They said if he were someone who did not have CF, they would probably put him on a transplant list. So, I guess what I'm saying is to some doctors, not familiar with CF, your condition may be serious, but to a doctor who is familiar with CF you're not. We have a doppler ultra sound once a year to check that the blood flow is good. We go to a CF GI specialist every 3 months. It is a matter of finding a team of doctors you can trust.
 
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chipie12

New member
I have a 11 year old with liver damage(cirrohis). He too takes URSO. He takes 3 250mg tablets a day. His liver is so enlarged his spleen is swollen and his belly sticks out. We have been to specialists in Childrens Hospital of Philadelphia, and recently a liver transplant team, and they said it is not necessary for him to be on a transplant list yet. They told us that, they're not exactlly sure why, but people with CF can live with their liver like this for a very long time. They said if he were someone who did not have CF, they would probably put him on a transplant list. So, I guess what I'm saying is to some doctors, not familiar with CF, your condition may be serious, but to a doctor who is familiar with CF you're not. We have a doppler ultra sound once a year to check that the blood flow is good. We go to a CF GI specialist every 3 months. It is a matter of finding a team of doctors you can trust.
 
C

chipie12

New member
I have a 11 year old with liver damage(cirrohis). He too takes URSO. He takes 3 250mg tablets a day. His liver is so enlarged his spleen is swollen and his belly sticks out. We have been to specialists in Childrens Hospital of Philadelphia, and recently a liver transplant team, and they said it is not necessary for him to be on a transplant list yet. They told us that, they're not exactlly sure why, but people with CF can live with their liver like this for a very long time. They said if he were someone who did not have CF, they would probably put him on a transplant list. So, I guess what I'm saying is to some doctors, not familiar with CF, your condition may be serious, but to a doctor who is familiar with CF you're not. We have a doppler ultra sound once a year to check that the blood flow is good. We go to a CF GI specialist every 3 months. It is a matter of finding a team of doctors you can trust.
 
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blopunky

New member
my 8 year old also takes urso. the 250mg twice daily. When he was around 3or4 one of his liver panels showed an elevated enzyme level, his ped. G.I. dr. put him on the urso. and a med. called lactulose-it's a liquid we have to have flavor added to because it tastes so bad. The first time he took it he threw up and I told him it couldn't be that bad so I tried it-I almost threw up! I don't doubt his taste any more!! Back to the issue at hand, so far his liver enzymes have been normal and this last one in april his dr. said was excellent! She even commented on how well the liver meds. were working. I don't know if it's because they started them early or what but it has worked(so far) for him. I hope this helps.
blopunky's mom
 
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blopunky

New member
my 8 year old also takes urso. the 250mg twice daily. When he was around 3or4 one of his liver panels showed an elevated enzyme level, his ped. G.I. dr. put him on the urso. and a med. called lactulose-it's a liquid we have to have flavor added to because it tastes so bad. The first time he took it he threw up and I told him it couldn't be that bad so I tried it-I almost threw up! I don't doubt his taste any more!! Back to the issue at hand, so far his liver enzymes have been normal and this last one in april his dr. said was excellent! She even commented on how well the liver meds. were working. I don't know if it's because they started them early or what but it has worked(so far) for him. I hope this helps.
blopunky's mom
 
B

blopunky

New member
my 8 year old also takes urso. the 250mg twice daily. When he was around 3or4 one of his liver panels showed an elevated enzyme level, his ped. G.I. dr. put him on the urso. and a med. called lactulose-it's a liquid we have to have flavor added to because it tastes so bad. The first time he took it he threw up and I told him it couldn't be that bad so I tried it-I almost threw up! I don't doubt his taste any more!! Back to the issue at hand, so far his liver enzymes have been normal and this last one in april his dr. said was excellent! She even commented on how well the liver meds. were working. I don't know if it's because they started them early or what but it has worked(so far) for him. I hope this helps.
blopunky's mom
 
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CheynnesDad

New member
Also keep an eye on your spleen, it takes strain if you have a bad liver, my sons was removed when it was very large (3.5kg). You probably have symptoms of portal hypertension (think it's called) and while you need to keep that spleen as long as possible, we nearly left it too late.

Once the spleen is removed, you must keep any infection under strict control, dont slack off just because its a nigling cough or you have just come out of your last treatment.
 
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CheynnesDad

New member
Also keep an eye on your spleen, it takes strain if you have a bad liver, my sons was removed when it was very large (3.5kg). You probably have symptoms of portal hypertension (think it's called) and while you need to keep that spleen as long as possible, we nearly left it too late.

Once the spleen is removed, you must keep any infection under strict control, dont slack off just because its a nigling cough or you have just come out of your last treatment.
 
C

CheynnesDad

New member
Also keep an eye on your spleen, it takes strain if you have a bad liver, my sons was removed when it was very large (3.5kg). You probably have symptoms of portal hypertension (think it's called) and while you need to keep that spleen as long as possible, we nearly left it too late.

Once the spleen is removed, you must keep any infection under strict control, dont slack off just because its a nigling cough or you have just come out of your last treatment.
 
C

coltsfan715

New member
Hi there guys,

I am not trying to question anyone's care here, so please do not take my post that way.

I do NOT have experience with liver damage, but have had bloodwork come back and show my liver enzymes as abnormally elevated. When we saw that my doc told me it could be a sign of Hep. C, Liver Failure or gall stones. I ended up pursuing it on my own and self diagnosed gall stones (about 2-3 months before my docs would believe me). My liver function tests came back abnormal and somewhat random until I had my gall bladder removed. It was full of hundreds of tiny gallstones and THAT had been causing my problem.

Since I had surgery I have not had abnormal liver enzymes on my blood work. I know that is not the case for everyone, but I wanted to put that idea out there, so if there is anyone that has elevated liver enzymes they can make sure that it is not gall stones too. Though I don't know what they do to diagnose liver damage/failure, so I am sure they would rule every other possibility out - but then again if I had not pushed for testing for my gallbladder it quite possibly would have never been diagnosed.

Take Care Guys,
Lindsey
 
C

coltsfan715

New member
Hi there guys,

I am not trying to question anyone's care here, so please do not take my post that way.

I do NOT have experience with liver damage, but have had bloodwork come back and show my liver enzymes as abnormally elevated. When we saw that my doc told me it could be a sign of Hep. C, Liver Failure or gall stones. I ended up pursuing it on my own and self diagnosed gall stones (about 2-3 months before my docs would believe me). My liver function tests came back abnormal and somewhat random until I had my gall bladder removed. It was full of hundreds of tiny gallstones and THAT had been causing my problem.

Since I had surgery I have not had abnormal liver enzymes on my blood work. I know that is not the case for everyone, but I wanted to put that idea out there, so if there is anyone that has elevated liver enzymes they can make sure that it is not gall stones too. Though I don't know what they do to diagnose liver damage/failure, so I am sure they would rule every other possibility out - but then again if I had not pushed for testing for my gallbladder it quite possibly would have never been diagnosed.

Take Care Guys,
Lindsey
 
C

coltsfan715

New member
Hi there guys,

I am not trying to question anyone's care here, so please do not take my post that way.

I do NOT have experience with liver damage, but have had bloodwork come back and show my liver enzymes as abnormally elevated. When we saw that my doc told me it could be a sign of Hep. C, Liver Failure or gall stones. I ended up pursuing it on my own and self diagnosed gall stones (about 2-3 months before my docs would believe me). My liver function tests came back abnormal and somewhat random until I had my gall bladder removed. It was full of hundreds of tiny gallstones and THAT had been causing my problem.

Since I had surgery I have not had abnormal liver enzymes on my blood work. I know that is not the case for everyone, but I wanted to put that idea out there, so if there is anyone that has elevated liver enzymes they can make sure that it is not gall stones too. Though I don't know what they do to diagnose liver damage/failure, so I am sure they would rule every other possibility out - but then again if I had not pushed for testing for my gallbladder it quite possibly would have never been diagnosed.

Take Care Guys,
Lindsey
 
B

blopunky

New member
Hey lindsey! You know i never thought of that before and it is definately something to keep in mind. i wonder how young you can develope gall stones? it seems that they are there well before they are known about and probably wouldn't then if not for the liver panels cf people get. the med's my son is on seem to be helping his elevated enzyme prob.(they have been normal for a few years). but you never know what the future holds and you can never have too much information!!!
blopunky's mom
 
B

blopunky

New member
Hey lindsey! You know i never thought of that before and it is definately something to keep in mind. i wonder how young you can develope gall stones? it seems that they are there well before they are known about and probably wouldn't then if not for the liver panels cf people get. the med's my son is on seem to be helping his elevated enzyme prob.(they have been normal for a few years). but you never know what the future holds and you can never have too much information!!!
blopunky's mom
 
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