Meld? and Getting Listed

[Guest guest]

My doctor is Dr. Laurin (female) supposedly " the " best

liver specialist in my area (DC/Baltimore) even better than at

Hopkins per other doctors... but again, I still don't know what a

meld test is ... maybe I missed the explanation--- my " numbers "

aren't terrible, mostly elevated liver enzymes, but the ERCP showed

the blockages (which have been present since 98) ... and I'm

incredibly fatigued, no stamina (trying to get disability, what fun

that is!) ... if in fact I could get on a list at this point in

time, how does one even " get on a list " or where, my doc is saying

since I don't have cirhosis and my numbers aren't REALLY high I'm

not eligible - she says when they get into the several hundreds,

thousands for liver enzymes then yes, right now it's like 350 or so

for AST I believe.

Has anyone got on a list with a similar situation ...

(is there such thing as tranplanting the ducts, or always the whole

liver - since my liver so far is seemingly okay - but it sure

doesn't FEEL that way since it's tender and sluggish -)

Thanks

barbara in land

In , Marti wrote:

>

> Barb

> How much does your Dr know about PSC? Many know very little.

Make really sure he is up to date on current treatment or get a

second opinion.

> Marti

>

> Barbara Webber wrote:

> All my ducts are blocked, but my liver biopsy showed no

cirhosis -

> so my dr said I don't go on the transplant list ... no

jaundice ...

> never heard of the meld - what is that...so am I lucky not to have

> to go on the list or should I be pushing more???? Biggest

complaint

> is incredible fatigue and weakness, pain off an on, complications

> with pancreatitis and eating ...

>

>

>

> >

> > I've been there recently. I had my whole R hepatic duct close

off

> > about 2 months ago. I turned yellow and had to face geting on the

> > transplant list. I finally got on the transplant list about a

> week ago.

> > Here is what I would focus on:

> > 1. Get on the transplant list ASAP before you get sicker--It's a

> lot

> > of work and takes much longer than expected. If your ducts are

> blocked

> > then your bili and INR may be high and give you a high meld

> score. If

> > you are not on the list you will not get a transplant no matter

how

> > high your meld.

> > 2. You have to choose a center (this is a big deal if you don't

> live

> > close to a good program.) You need to talk to the transplant

> > coordinator about every other day so that she knows your name.

You

> > have to call your GI doctor and make sure he has made a referal

and

> > sent the records. You have to call your insurance company and

get

> a

> > case manager incase the transplant must be pre-authorized.

Again

> if

> > you are on a first name basis with your coordinator they will

help

> you

> > through the jungle.

> > 3. Work with your doctor on optimizing your health. Chances are

> good

> > that you will need perscription doses of Vit D and an

osteoporosis

> > medication since your body doesn't make vit D. Make sure the

blood

> > test is dihyro Vit D level. Consider colon cancer screening if

UC.

> > Consider testosterone measurement. You may want to get an

review

> the

> > PSC 2006 conference because there is so much to learn.

> >

> > Patients that take an active role in their conditions get better

> results.

> > This list is helpful since there are many here that know much

more

> > than myself.

> >

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