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Anyone have a CFer with liver disease?

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lflatford

New member
Our daughter is having some tests ran because the Gastro doc. noticed her liver was enlarged. He wouldn't tell me why he is having the tests ran and what he is looking for. But doing research I found out that enlarged liver and constant bloating are signs of liver disease, my daughter has both of those signs. I am worried that this is what the doc is looking for. I read that less than 10% of CFers develop liver disease. I hope this is the case for my daughter. Does anyone have CF and liver disease?
 
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anonymous

New member
Lynsey-
We were told that Jack had liver disease when he was three months old. He was born with meconium illeus (a risk factor for liver disease). His liver was enlarged and his GGT blood test was around 460 when normal is below 40 or so. It was quite a shock for me to hear this about my newborn baby.

After a few months on Actigal, Jack's liver GGt numbers went down to 14 and have stayed there, thankfully. His GI doctor said even with low numbers he still has liver disease. The Actigal can cause numbers to be deceiving. What matters is the size of his liver. His liver has slowly become normal sized.

Jack has not had any other testing done for his liver. There is another family at our church who has a son with cf. He is now 11 and he had a liver transplant two years ago and is doing great. Like lung disease, liver disease varies from person to person. My son's GI doctor says is that most cfer's liver disease is mild and treatable. Also, at some point the liver plays a role for most cfers. My daughters liver numbers were a bit off at her last appointment. But the doctor said no need to worry, she is fine.

Hope Avery's tests come back with good news. She will be in my prayers.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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65rosessamurai

Guest
I'm 40 years old, and have been developing large GOT numbers, and have also been recently diagnosed as having a "fatty liver". the diagnosis was about a month ago, so I figure after the strict diet I've been on (anything to help, not hurt the liver), I'm willing to take another test on how it's doing. (But I've had liver trouble for a while)

The best suggestion is to avoid the things that give the liver a hard time, and try and give nutrition that would help induce it to heal itself. Of course, the things the doctor suggests go hand in hand with my suggestion. I bring up the suggestion because that is how I'm trying to play it.

Since we're referring to children, under 18, I don't have to add the fact to insist on cutting down on alcoholic beverages--but it's one thing I have to do for myself. Thank goodness, I don't drink much in the first place!
 
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purpleangel28282

New member
My liver showed up to be somewhat enlarged on one of my catscans and so we've done testing to see what's up with it. I had a biopsy and the results seemed iffy as to what was wrong. It was either liver disease or a fatty liver. They decided it was a fatty liver, however my doctor wants me to go and see a GI doctor and keep an eye on it. I hope that your son doesn't have liver disease, but just keep in mind it could be something less serious.
 
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anonymous

New member
This is my first time to do this. Just logged in and am searching around. Our family is new to this. Our Grandson was born with CF. He is now 7 months old. I am still learning. I saw the topic and I havent seen many with CF liver disease. The first months of our grandsons life he did not look well. His liver has improved. The doctors do not seem as concerned with it at this time. He is taking the actigal. The doctors have given very good reports until this week. His CF, for now is gastointestinal. (born with bowel obstrution) had part of intestine removed after he was born. The doctors have been telling the kids (daughter and son-inlaw) he is doing well. The big issue for him is weight gain. He eats well, and the reports have been postive until this week. The doctor said he needs to gain more weight. It is confusing to use because last month everone was positive. In regards to the liver. His color is good and the doctors for now, say his liver size is fine??
 
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anonymous

New member
My 18-year old daughter with CF has developed a serious liver disease. She's now on the transplant list. She will probably have to wait for 1 1/2 years before a donor liver will become available (hopefully). Early signs of liver problems are: enlarged liver (and spleen), itching, extreme tiredness. Fortunately, serious liver problems like in my daughter are not standard for CF.
 
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anonymous

New member
Our son was diagnosed at 4 months. His liver values were off initially and after a few months of Ursidiol (same as Actigul) his levels came back fine. They took him off in June and he just had his annual blood draw and his levels were fine again!!! So for us it was temporary inflammation due to other systems being "off". Once he began gaining weight and we got his nutrional status on track he improved. The Ursidiol is fairly benign in that is it simply thins out the bile so that the liver doesn't have to work as hard. I'm not sure if all liver issues are as simple but I believe it can be temporary in alot of cases.

Jody mom of Julia 6 w/out CF and Ben 18 months w/CF
 
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