cf related liver disease

findingher · Feb 27, 2008

I have liver cirrhosis. I was diagnosed at 14, as well. I had an esouphageal bleed when I was about 22, and had to have shunts placed then. I'm currently trying to list for a double lung tx, but since they suspect my liver will fail if it has to take on the burden of all the drugs post transplant, I'm searching for a hospital in my area (Boston) willing to do both.

findingher · Feb 27, 2008

I have liver cirrhosis. I was diagnosed at 14, as well. I had an esouphageal bleed when I was about 22, and had to have shunts placed then. I'm currently trying to list for a double lung tx, but since they suspect my liver will fail if it has to take on the burden of all the drugs post transplant, I'm searching for a hospital in my area (Boston) willing to do both.

findingher · Feb 27, 2008

I have liver cirrhosis. I was diagnosed at 14, as well. I had an esouphageal bleed when I was about 22, and had to have shunts placed then. I'm currently trying to list for a double lung tx, but since they suspect my liver will fail if it has to take on the burden of all the drugs post transplant, I'm searching for a hospital in my area (Boston) willing to do both.

findingher · Feb 27, 2008

I have liver cirrhosis. I was diagnosed at 14, as well. I had an esouphageal bleed when I was about 22, and had to have shunts placed then. I'm currently trying to list for a double lung tx, but since they suspect my liver will fail if it has to take on the burden of all the drugs post transplant, I'm searching for a hospital in my area (Boston) willing to do both.

findingher · Feb 27, 2008

I have liver cirrhosis. I was diagnosed at 14, as well. I had an esouphageal bleed when I was about 22, and had to have shunts placed then. I'm currently trying to list for a double lung tx, but since they suspect my liver will fail if it has to take on the burden of all the drugs post transplant, I'm searching for a hospital in my area (Boston) willing to do both.

krisgabes · Feb 27, 2008

i have liver involvement as well. i've been on actigall since i was 13 for enlarged spleen and liver (hypersplendameglia) i think i spelled it right. all fancy language for high blood pressure in my spleen and liver. my platelets are low because of it, and my liver levels are high, but my GI didn't recommend anything beyond keeping a close eye on things. i see a liver specialist in NYC at Mount Sinai every 6 months. i just had an endoscopy where they thought they'd have to band my verices in my esophagus, but thank god, they didn't have to.

i'm glad you posted on this though, because i have only really had gastric involvement up until about this past year, then my lungs started getting more involved.

krisgabes · Feb 27, 2008

i have liver involvement as well. i've been on actigall since i was 13 for enlarged spleen and liver (hypersplendameglia) i think i spelled it right. all fancy language for high blood pressure in my spleen and liver. my platelets are low because of it, and my liver levels are high, but my GI didn't recommend anything beyond keeping a close eye on things. i see a liver specialist in NYC at Mount Sinai every 6 months. i just had an endoscopy where they thought they'd have to band my verices in my esophagus, but thank god, they didn't have to.

i'm glad you posted on this though, because i have only really had gastric involvement up until about this past year, then my lungs started getting more involved.

krisgabes · Feb 27, 2008

i have liver involvement as well. i've been on actigall since i was 13 for enlarged spleen and liver (hypersplendameglia) i think i spelled it right. all fancy language for high blood pressure in my spleen and liver. my platelets are low because of it, and my liver levels are high, but my GI didn't recommend anything beyond keeping a close eye on things. i see a liver specialist in NYC at Mount Sinai every 6 months. i just had an endoscopy where they thought they'd have to band my verices in my esophagus, but thank god, they didn't have to.

i'm glad you posted on this though, because i have only really had gastric involvement up until about this past year, then my lungs started getting more involved.

krisgabes · Feb 27, 2008

i have liver involvement as well. i've been on actigall since i was 13 for enlarged spleen and liver (hypersplendameglia) i think i spelled it right. all fancy language for high blood pressure in my spleen and liver. my platelets are low because of it, and my liver levels are high, but my GI didn't recommend anything beyond keeping a close eye on things. i see a liver specialist in NYC at Mount Sinai every 6 months. i just had an endoscopy where they thought they'd have to band my verices in my esophagus, but thank god, they didn't have to.

i'm glad you posted on this though, because i have only really had gastric involvement up until about this past year, then my lungs started getting more involved.

krisgabes · Feb 27, 2008

i have liver involvement as well. i've been on actigall since i was 13 for enlarged spleen and liver (hypersplendameglia) i think i spelled it right. all fancy language for high blood pressure in my spleen and liver. my platelets are low because of it, and my liver levels are high, but my GI didn't recommend anything beyond keeping a close eye on things. i see a liver specialist in NYC at Mount Sinai every 6 months. i just had an endoscopy where they thought they'd have to band my verices in my esophagus, but thank god, they didn't have to.
<br />
<br />i'm glad you posted on this though, because i have only really had gastric involvement up until about this past year, then my lungs started getting more involved.

mom2haydie · Feb 28, 2008