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RE: Barb - PATTI...re Ken

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Barb,

Jeez, “Déjà vu all over again”…same

kind of thing happened to me – except my employer terminated me 2 days

after the insurance secretary got a letter from the hospital spelling out my

diagnosis and prognosis (at that time, PSC was defined as “an uncommon

disease of unknown origin, universally fatal in 2 to 3 years”).

From what I know about Cobra, if Ken was

eligible to be covered under his employer’s Group Health Plan on the day

of termination, and the termination was for reasons other than “gross

misconduct”, his Cobra coverage should continue for 18 months, which

would make it the third week of April Next year. Was he covered, but not yet

receiving benefits, under the employers Group plan?

The threshold MELD score for listing

varies, depending on the Center, as does the median score at which most

transplants take place. At U of Iowa, for instance, they have set a very low

threshold, and most transplants are done in the 11 -18 range. Is Ken’s

primary Doc on staff at the Center where you would want him listed? If not, you

don’t have to wait for his primary Doc to give his OK for a transplant

evaluation. You can self-refer to the Center of your choice. They will have you

sign a release that allows them to get Ken’s records from his primary

Doc, then do their own workup from there. Of course, you would need to have the

insurance issue cleared up, or work out a payment plan with the Center. Sometimes

I think the most important test we go through is the “wallet biopsy”.

Steve

Rahn

L Tx 9/6 & 9/8 '85 (Wash.

U-STL)

Waiting for Re-Tx (U of IA)

" si tu dixeru, necesse erit ut tu

interficiam "

RE:

PATTI...re Ken

Ken is not

listed.  He went for an evaluation in

1999 – but was not listed then. 

This past Monday (24th) I asked his Primary Doctor if he

thought Ken should go for another evaluation. 

He said no, he thinks Ken is “stable.” In 2000 Ken’s

MELD score was 12, in 2001 it was 13, in 2002 (for a period of 3 months it went

down to a 10) and now is back to a 13. I know people with lower scores that are

listed – but they have had a bleed – Ken has not (in large part due

to the banding I think.) We are powerless to do anything without the

doctor’s approval. Now here is the rub…Ken lost his job 1 week

before Christmas (wasn’t that oh so convenient for them – exactly 1

week before he would have qualified for insurance!)  He will lose his Cobra the 3rd.

week of April.  There is nothing I can do

about that. The Cobra insurance isn’t good enough to go shopping for a

new doctor. Plus we have to try and rush around to get a few things done before

he becomes uninsured. He has some suspicious moles that have to be removed. GI

doctor wants to do more banding – but we owe the hospital too much

(another insurance error.) So, I am doing all I can to get him on disability or

Medicaid – which ever he can get.) 

The stress is causing all of us problems – but we are basically

helpless to do more. Thanks for listening. 

   

Barb in

Texas

Son,

Ken 28

UC

91 PSC 99

-----Original

Message-----

From: * *

when I hear you

talk of Ken's health status I have to ask cause I don't

remember...is he listed? and if

not...why?

Patti

 

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What is the MELD score? I've heard it mentioned a few times now.

Marie

>From: "Steve Rahn"

>Reply-To: >To:

>Subject: RE: Barb - PATTI...re Ken >Date: Fri, 28 Feb 2003 11:38:55 -0600 > >Barb, >Jeez, “Déjà vu all over again”…same kind of thing happened to me – >except my employer terminated me 2 days after the insurance secretary >got a letter from the hospital spelling out my diagnosis and prognosis >(at that time, PSC was defined as “an uncommon disease of unknown >origin, universally fatal in 2 to 3 years”). >From what I know about Cobra, if Ken was eligible to be covered under >his employer’s Group Health Plan on the day of termination, and the >termination was for reasons other than “gross misconduct”, his Cobra >coverage should continue for 18 months, which would make it the third >week of April Next year. Was he covered, but not yet receiving benefits, >under the employers Group plan? >The threshold MELD score for listing varies, depending on the Center, as >does the median score at which most transplants take place. At U of >Iowa, for instance, they have set a very low threshold, and most >transplants are done in the 11 -18 range. Is Ken’s primary Doc on staff >at the Center where you would want him listed? If not, you don’t have to >wait for his primary Doc to give his OK for a transplant evaluation. You >can self-refer to the Center of your choice. They will have you sign a >release that allows them to get Ken’s records from his primary Doc, then >do their own workup from there. Of course, you would need to have the >insurance issue cleared up, or work out a payment plan with the Center. >Sometimes I think the most important test we go through is the “wallet >biopsy”. > >Steve Rahn >L Tx 9/6 & 9/8 '85 (Wash. U-STL) >Waiting for Re-Tx (U of IA) >"si tu dixeru, necesse erit ut tu interficiam" > > RE: PATTI...re Ken > >Ken is not listed. He went for an evaluation in 1999 – but was not >listed then. This past Monday (24th) I asked his Primary Doctor if he >thought Ken should go for another evaluation. He said no, he thinks Ken >is “stable.” In 2000 Ken’s MELD score was 12, in 2001 it was 13, in 2002 >(for a period of 3 months it went down to a 10) and now is back to a 13. >I know people with lower scores that are listed – but they have had a >bleed – Ken has not (in large part due to the banding I think.) We are >powerless to do anything without the doctor’s approval. Now here is the >rub…Ken lost his job 1 week before Christmas (wasn’t that oh so >convenient for them – exactly 1 week before he would have qualified for >insurance!) He will lose his Cobra the 3rd. week of April. There is >nothing I can do about that. The Cobra insurance isn’t good enough to go >shopping for a new doctor. Plus we have to try and rush around to get a >few things done before he becomes uninsured. He has some suspicious >moles that have to be removed. GI doctor wants to do more banding – but >we owe the hospital too much (another insurance error.) So, I am doing >all I can to get him on disability or Medicaid – which ever he can get.) >The stress is causing all of us problems – but we are basically helpless >to do more. Thanks for listening. > > >Barb in Texas >Son, Ken 28 >UC 91 PSC 99 > >-----Original Message----- >From: * * >when I hear you talk of Ken's health status I have to ask cause I don't >remember...is he listed? and if not...why? >Patti > > > > > > > >

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