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Phil, i'm so sorry you're having a rough time with your medical staff.

Do you have someone that you could take with you to act as your medical

advocate? My sister recently had gallbladder problems but she almost

didn't get it taken care of because the doctor she spoke with was so

incredibly unresponsive and dismissive of her complaints. I went in

with her and brought a pad and pen and asked a few pointed questions

and he miraculously became extremely solicitous and interested. My

advice would be to be persistent - they may be in a rush but you

deserve their time and do not have to be rushed out of the office.

Come with a list of questions and do not leave until they've answered

your questions and you've written down their responses. Having someone

with you that can do this part may also make it easier for you -

because you won't have to try to stay on top of all the details when

you're not feeling well - and for the doctor, who may feel more

comfortable talking about diseases in the abstract then looking someone

in the eye and proposing, e.g., surgery. Good luck!

Nina

husband PSC 4/06

> The disease itself and the other issues are

> bad enough, however the frustration with the medical

> staffs in my situation is really an added headache.

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Phil, i'm so sorry you're having a rough time with your medical staff.

Do you have someone that you could take with you to act as your medical

advocate? My sister recently had gallbladder problems but she almost

didn't get it taken care of because the doctor she spoke with was so

incredibly unresponsive and dismissive of her complaints. I went in

with her and brought a pad and pen and asked a few pointed questions

and he miraculously became extremely solicitous and interested. My

advice would be to be persistent - they may be in a rush but you

deserve their time and do not have to be rushed out of the office.

Come with a list of questions and do not leave until they've answered

your questions and you've written down their responses. Having someone

with you that can do this part may also make it easier for you -

because you won't have to try to stay on top of all the details when

you're not feeling well - and for the doctor, who may feel more

comfortable talking about diseases in the abstract then looking someone

in the eye and proposing, e.g., surgery. Good luck!

Nina

husband PSC 4/06

> The disease itself and the other issues are

> bad enough, however the frustration with the medical

> staffs in my situation is really an added headache.

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