new with a question also

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New Member

Date Joined Nov 2009
Total Posts : 2
   Posted 11/3/2009 1:20 PM (GMT -6)   
I have twin 5 year olds with cf. The dr called and said that one of their liver enzymes were high when they got their yearly blood work and that it has been high before, normal last test and high again this time. Tehy are going to retest her and then go from there i guess. What I would like to know is what does this mean? Does it automatically mean liver disease or cihrrosis? (sp?) they have me a nervous wreck now!! thank you!

Forum Moderator

Date Joined Feb 2007
Total Posts : 1050
   Posted 11/3/2009 2:09 PM (GMT -6)   
Hi there,

I'm not sure whether the high enzymes mean liver cirrohsis or not. There is a CF related version of liver cirrohsis caused by all the sticky mucus (gets everywhere doesn't it?).
When I was diagnosed with mild liver cirrohsis, there were 2 things that were noted-my liver enzymes were always high and kept getting higher each year, and my ultrasound was dodgy too. That then prompted them to take a biopsy of my liver (it's invasive in that they're sticking a needle in your side but not really a big op, and they will be asleep through it). I was put on Ursodeoxcholic Acid, the most common medicine for treating CF related liver cirrohsis. This pretty much stalls any further damage from happening to the liver and keeps things running smoothly. It has calmed my liver enzymes right right down, and there actually seemed to be less inflammation on my last ultra sound (I've been taking it for years, though for a while only sporodically as I was going through a stage of only taking meds if I could see them working. I'm fine with them now though, rarely miss a dose of anything-unless they're giving me side effects that I can't stand.)

I think, the best thing to do is just wait and see and try not to worry about it, if it's mild liver cirrohisis, then it hardley even registers on the radar when you have it. I was diagnosed at 11, and I'm now 23, and the only way it bothered me since being diagnosed, is the doctors telling me about it. Also, the Urso is extremely good at halting any further destruction.

Hope this helps ease your worries a bit.
All the best
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
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Post Edited (Darkies Gem) : 11/3/2009 12:13:02 PM (GMT-7)

New Member

Date Joined Nov 2009
Total Posts : 2
   Posted 11/3/2009 2:47 PM (GMT -6)   
Thank you very much! I really appreiate all of this information. You have definitely helped me with this and worrying to much! It is nice getting some information when left hanging by the docotors!

Tahnk again! =) Jen
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