Re: Re: UNOS listing policy

[Guest guest]

I sure hope Laurie and Lynn write. What about the cancer risk. I'm sorry I

don't want to hear - IT IS SOOO RARE! Being rare doesn't make it NOT a Risk

and when the doctors admit that if they are getting reoccuring infections

they are more at risk. I know there are others that have joined the our

group and dropped off because of cancer and what about Walter Payton.

Sorry, I can't dismiss this so easily it stays somewhere in my mind all the

time.

Peg (who's been feeling way too emotional the last few days).

[Guest guest]

Peg--

believe me, I'm thinking seriously about writing. The only thing stopping

me is I don't want the tx center to be contacted and for them to look at me

as " causing trouble. " I sure want to help others to avoid what I am going

through, though. I have a " draft " msg I've been sitting on for several days

now-just giving myself a cooling off period b/4 sending it.

Laurie

Re: Re: UNOS listing policy

> I sure hope Laurie and Lynn write. What about the cancer risk. I'm sorry

I

> don't want to hear - IT IS SOOO RARE! Being rare doesn't make it NOT a

Risk

> and when the doctors admit that if they are getting reoccuring infections

> they are more at risk. I know there are others that have joined the our

> group and dropped off because of cancer and what about Walter Payton.

> Sorry, I can't dismiss this so easily it stays somewhere in my mind all

the

> time.

> Peg (who's been feeling way too emotional the last few days).

>

>

>

>

>

[Guest guest]

athan,

I'm reading the new policy ( bit by bit- too busy week end ahead ) So far it sounds good to me. "Other mortality predictors & disease indications such as

PSC would be considered " " Entire spectrum of liver disease resentative" "Separate scale for pediatric patients " " Additional Pts. for Encephalopathy, Bleeds, Fluid, TIPS, and Cholangiocarcinoma "

I'm going to fill out their form and fax it in so my husband and I can go to the public forum in Dallas. If I get accepted I'll let everyone know so they they can fax me...ALOT of letters to hand carry. Barb

----- Original Message -----

From: athan

http://www.unos.org/frame_Default.asp?Category=PCommentThere are links on that page to access the new policy proposal, and the online public comment form...athan

[Guest guest]

athan,

So in your opinion do you think we should oppose this new policy when we

send in the comment form??

Barby

[Guest guest]

> " Additional Pts. for Encephalopathy, Bleeds, Fluid, TIPS, and

>Cholangiocarcinoma "

Unfortunately, this was suggested at the first meeting, and you will

find as you read farther that they changed their mind at the second

meeting and are recommending that none of these things be considered...

at least not at first. They are afraid it will muddy the waters and

make it harder to track how effective the new policy is. If they accept

this recommendation then those of us who are now listed, or get listed

in the near future, may end up being guinea pigs as they watch to see

how their new system works. They may determine after a while that too

many people are dying on the list from some of these serious

complications and begin considering them again for additional points,

but that will be small comfort to those for whom it's too late (or their

families!).

I guess that since I'm already having trouble getting on the list

despite the fact that I already have pretty serious problems with

varices, I've been kind of frustrated with that aspect of it.

I do agree that the new criteria doesn't look all that bad if they do

add in the possiblity of getting more points for some of these

complications...

athan

I'm going to fill out their form and fax it in so my husband and I can

go to the public forum in

Dallas. If I get accepted I'll let everyone know so they they can fax

me...ALOT of letters to

hand carry. Barb

[Guest guest]

Here's the final recommendation by the committee as regards adding

points for life threatening complications...

athan

*****

In recommening the MELD model, the LDSS Comittee and the Liver and

Intestinal Organ Committee agreed that the MELD score would not be

suplemented with additional points for life-threatening complications,

at least at its initial implementation as UNOS policy. The reasons for

this were that the model itself addresses a number of these

complications in its predicitive scoring (i.e. TIPS for refractory

ascites and variceal bleeding and creatinine). In addition, the

probability of death if a life-threatening event occurs is based more on

the severity of the patient's underlying liver disease rather than the

event itself. There also was concern among the Committees that

assigning points for complications in an arbitrary manner could

adulterate the model's predictive value. In their recommendations,

howerver, the Committees agreed that data on medical complications will

be prospectively collected for future analysis of the impact of these

events on waiting list mortality. Furthermore, the model's validity

currently is being tested against the UNOS liver transplant waitin list.

[Guest guest]

Nordgren1@... wrote:

>

> athan,

> So in your opinion do you think we should oppose this new policy when we

> send in the comment form??

I'm going to argue that they should assign points for life threatening

complications. I'll probably also ask that they think about some of the

risks peculiar to PSC, such as cholangiocarcinoma. Other than that, I

think the basic scoring system is OK, although it does look to me like

points will stay low longer, and then increase quickly as the liver

begins to fail.

athan

[Guest guest]

athan--

You said in a nutshell what I've tried to say a couple of days ago-only I

took a lot more words to say it. I agree!!! If they want testimonials

regarding this, I'll do that as well!

Laurie, Tx 5/5/00; cholangiocarcinoma found on pathology report after tx

Re: Re: UNOS listing policy

> Nordgren1@... wrote:

> >

> > athan,

> > So in your opinion do you think we should oppose this new policy when

we

> > send in the comment form??

>

>

> I'm going to argue that they should assign points for life threatening

> complications. I'll probably also ask that they think about some of the

> risks peculiar to PSC, such as cholangiocarcinoma. Other than that, I

> think the basic scoring system is OK, although it does look to me like

> points will stay low longer, and then increase quickly as the liver

> begins to fail.

>

> athan

>

>

>

>