Re: Thanks for the support - Request info. on Mayo

[Guest guest]

Your husband and you and your children will be in my thoughts.

Take care and give your kids lots of hugs and kisses during this difficult time.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

Thanks for all the support.If hubby does come up + with cholangiocarcinoma, it looks like we will not get much help here in Sydney. ... I need to work out what to do next...Please pray the cholangiocarcinoma tests come up negative...Pam

[Guest guest]

I do not know what Mayo requires as far as $$ for uninsured pt. But

Baylot in Texas requires a $250,000 cash deposit just to get a

transplant evaluation for a liver.

>

> Thanks for all the support.If hubby does come up + with

> cholangiocarcinoma, it looks like we will not get much help here in

> Sydney. Have heard of Mayo in the US, but considering our insurance

> will not apply, does anybody know what kind of money we are talking

for

> treatment/transplant etc? Would like to be prepared and work out if

we

> can manage it with the help of our parents.Also, which is the best

> centre of Mayo, and the best specialist.

> My biggest worry is that if it does come +, All our docs will wash

> their hands off us. We have spoken to the transplant team, who has

> communicated as much to us, and all the specialists we have been in

> contact with due to PSC, they say 'Unfortunately, no one can

help'...

> I need to work out what to do next...

> Please pray the cholangiocarcinoma tests come up negative...

> Pam

>

[Guest guest]

Is it possible to figure out which of the doctors has the keenest

interest in PSC and appeal to that doctor's intellectual curiosity in

finding a method of attack if your husband does have CC? Perhaps you

could appeal to his or her ego in saying that it would be great to

have the first success of its kind in Sydney.... One of my best

doctors -- not a tx surgeon -- was one who was intellectually

challenged by all of my complications. My husband and I still think

he helped to save me.

Penny

>

> Thanks for all the support.If hubby does come up + with

> cholangiocarcinoma, it looks like we will not get much help here in

> Sydney. Have heard of Mayo in the US, but considering our insurance

> will not apply, does anybody know what kind of money we are talking for

> treatment/transplant etc?

>

> Pam

>