Re: problems of PSC

[Guest guest]

> >

> They haven't banded any of my varices. My GI doctor thinks they should

> but my specialist doesn't think it's necessary yet. I really confused

> about the blood clot. It showed up in a sonagram and they sent me to

> a group of hemotologist. One said a blood clot had passed, one said

> it was still there and another said veins has grown around it and it

> was stable. I go back to the liver doctor the end of this month.

> They did not want to put me on any blood thinners. Just said they

> would monitor it.

> What problems were you having before they banded the varices?

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Ellen -- Generally, they don't band varices unless they are at a grade

3 (which mine were). I think most likely your blood clot is in the

portal vein (that's the most likely spot) and the veins that have

grown around it are called collateral veins. Collaterals tend to form

in any part of the circulatory system where there is a blockage. This

is a good thing! I would ask your drs. what grade your varices are;

also, ask them just where your clot supposedly passed to!

They discovered my clots and varices this past April when I was in the

hospital for a particularly rough bout of cholangitis. After further

tests and monitoring, they banded 4 varices in early October and 5 in

early November. I have more which need to be banded but I'm trying to

wait until flu season is over before going back to the germ factory

(hospital)!!

By the way, I've had PSC at least since 1993 that we're sure of. My

meds include Xifaxan for the hepatic encephalopathy (this drug also

put my Crohn's in total remission ... that's the kind of side effect I

like!), Asacol for the Crohn's, Protonix for GERD, Singulair for

asthma and Elavil for fibromyalgia.

I asked the drs if these clots could break loose and do any damage

elsewhere and they assured me that with my level of cirrhosis, there's

no way those clots will ever work their way through my liver! There's

always a silver lining to everything, if you just look hard enough.

Regards,

Carolyn B. in SC