Problems/Questions B/4 Going to Liver Tx Ctr

[Guest guest]

Hi Group--

Sorry I haven't been on for awhile--just not up to it. Quick Questions b/4

my appt. on Tues., Jan. 18 - has anyone experienced:

1) Extreme abdominal distention to the point where you don't want to eat or

drink & it wakes you up at night because you can't sleep on either side due

to discomfort? Tried Lasix and it gets rid of 1-2# in a day, but the

distention is still there, getting worse as day goes on.

2) Pro Thombin (PT) time - is that blood test usually drawn only before an

invasive procedure--i.e., liver biopsy or ERCP?

My lab results are worse than they were in Sept. I always have them drawn

here b/4

going for my liver re-eval at the tx ctr. This time I faxed the results to

them & they

called back, wanting me to come earlier, fast, have an ultrasound (just had

one in Oct.) and a pro thombin (sp?) blood test. I didn't think to ask at

the time because I

was surprised and now that I think back, I recall having that one other time

and that

was just prior to surgery. Hmm. My platelets did drop, bili up,etc., etc.,

etc. - maybe they're thinking of ERCP? My husband can't go w/me this time -

our 18 yr

old son is. Hoping he doesn't have to face an ERCP or liver biopsy w/me.

Any ideas? solutions, either by what your dr said, etc..

Tks and everyone take care.

Laurie

[Guest guest]

Laurie

Hi my name is Luanne and my 17 yr old son has PSC,AIH,Crohns and RHA...In Oct

of 98 he had a lot of abdominal problems...couldn't eat, sleep..They admitted

him to hosp. through the ER...They had never seen such a large spleen....He

goes to Childrens Hosp in Philadelphia so its not like we are talking some

small town hosp....It literaly covered almost his whole abdominal

cavity...pushing everything out of its way...including his liver, stomach,

bowels ets...He was very uncomfortable...Given pred IV and was there for 2

weeks...until it was a little smaller...He was also made a spleen guard...a

cast had to be made and was wore around his entire middle ...all the way

around around and about 5 inches wide....He had to wear this anytime he was

awake....for months...then only when he was in the car or bus...of course no

gym....Its been over a year and his spleen still has its moments...but on a

whole is smaller...not normal size though..

He also has very low playlets...goes together...

Hope this has helped or at least something you can talk to your doctor about.

Luanne Ty's mom

[Guest guest]

Laurie,

PT is one of the 5 criteria on the CTP Score (along with

ascities - abdominal distention). It may be that they are

thinking you should be status 2B. Possibly scoring 3 on both

ascities and PT, plus 2 on one of bilirubin, albumin or

encephalopathy, and one on the other two would add up to 10

(Status 2B has a CTP score greater than or equal to 10, or a CTP

score greater than or equal to 7 and meets at least 1 of the

following medical criteria:...). Or maybe they have to cancel a

procedure because of bleeding risk.

--- Oceandrmer@... wrote:

>

> Hi Group--

> Sorry I haven't been on for awhile--just not up to it. Quick

> Questions b/4

> my appt. on Tues., Jan. 18 - has anyone experienced:

> 1) Extreme abdominal distention to the point where you don't

> want to eat or

> drink & it wakes you up at night because you can't sleep on

> either side due

> to discomfort? Tried Lasix and it gets rid of 1-2# in a day,

> but the

> distention is still there, getting worse as day goes on.

>

> 2) Pro Thombin (PT) time - is that blood test usually drawn

> only before an

> invasive procedure--i.e., liver biopsy or ERCP?

>

> My lab results are worse than they were in Sept. I always

> have them drawn

> here b/4

> going for my liver re-eval at the tx ctr. This time I faxed

> the results to

> them & they

> called back, wanting me to come earlier, fast, have an

> ultrasound (just had

> one in Oct.) and a pro thombin (sp?) blood test. I didn't

> think to ask at

> the time because I

> was surprised and now that I think back, I recall having that

> one other time

> and that

> was just prior to surgery. Hmm. My platelets did drop, bili

> up,etc., etc.,

> etc. - maybe they're thinking of ERCP? My husband can't go

> w/me this time -

> our 18 yr

> old son is. Hoping he doesn't have to face an ERCP or liver

> biopsy w/me.

>

> Any ideas? solutions, either by what your dr said, etc..

>

> Tks and everyone take care.

>

> Laurie

__________________________________________________

[Guest guest]

Luanne--

Your son really had to go through a lot there! A good thing he had a dr. who

knew

what was going on--that is so impt any more. Thanks for the info. I hope

that's not

the case w/me. I hope he is doing much better now.

Take care.

Laurie

[Guest guest]

As others have mentioned, spleen enlargment can cause the distention. So can

liver enlargement. And ascites.

PTT is part of the regular lab panel for Quantell. They adjust his vitamin K

supplements based on the results.

Pam (mom to Quantell, 9, dx 1996)