Confused and frustrated newbie

[Guest guest]

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole