Debra, Kathi, Gayle

[Guest guest]

Cyndi,

What do you think of University and the transplant team? I like them they are

professional but they don't go without fault. Keep a check on them if you

continue to see them. A couple of months ago I called and requested they send

me full lab reports every month. The secretary was not happy. I too was

misdiagnosed for 3 years. No follow ups no additional tests to decide. And I

paid the price of their stupidity. I had 36 hours before death had they not

found a liver for me. So it will do you justice to let your doctors know you

are paying attention and that you are interested in keeping track of your

progress. I am having terrible problems with my cholesterol of which

transplant is not following up so I will take my labs to my next appointment

which is the Rheumatologist a doctor I should have been sent to 3 years ago.

I have been in awful pain and finally talked the primary into setting up the

appointment, only she is not my regular doc and she was more sympathetic

yeah. I am stuck going to Denver General answers all. I have also gone to

WEBMD and put together a health bio that took me three days to input and so

far the docs are a bit more attentive with my paperwork. Has your pain let

up? ER told me I had hepatitis as well then changed their minds. Keep us

informed.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

Thanks for your replies.....

I guess I should start with my bio since I read alot of posts but don't always

get involved in the conversations.

Maybe I'm still in denial

I am married and the mother of 3. My youngest son whos is 10 has spherecytosis

which means his blood cells are sphere shaped. He went to a specialist from

ages 2 - 6 and they finally removed his spleen after a bad bout in which it got

huge. That incidentally was the cure for his problem, the spleen thought the

blood was diseased and kept eating his red blood cells. My oldest son has

Polycystic Kidney Disease and has no right kidney and around 79% of his left

kidney still working. He is in a study through the University of Colorado and

they provide all his meds and monitor him. He is 17 and doing fine but can't

play the sports he loves without pain or problems I also have a 12 year old

daughter who knock wood has been healthy . My husband has diverticulitis and we

are in the process as I write this of waiting for a GI specialist to see him to

decide whether he needs surgery.

I am 42 and with the exception of stomach problems had always been in great

health. In June of this year I started having alot of stomach pain and got

checked for gall bladder only to be told I had an ulcer. Went on Prevacid and

thought great that's easy. Went on a great family vacation before starting my

new job and still felt like crap. My urine was dark and my daughter thought I

looked yellow. Went to the hospital, for the first time they took a blood test

and told me I had hepatits A, B, or C. 2 days latter they called and said those

tests were negative. Ended up back in the hospital with the same groups of GI

docs and they ordered a biopsy. My numbers were climbing but they discharged me

and made me keep coming back for blood tests. Got so bad in my joints and

stomach I couldn't eat or move. My GI doctor told me that he had 2 patients

with AIH. I made the mistake of asking how they were doing with the disease.

One died waiting for a transplant and the other was on meds for the rest of her

life. I was praying that it wasn't AIH. He called and said it wasn't. 3 days

later he called and said maybe AIH cause some of the numbers were off. He would

send my biopsy to University for a second opinion. No calls from him and my

numbers were now, AST 1915 and ALT 2290. My husband and my father got so scared

and frustrated waiting and watching me get worse that they hand carried my file

to University and asked about my biopsy that was suppose to be there.

University got me in to see a Hepatologist who immediately admitted me and

started me on high doses of Prednisone. My GI doctor, who I think would have

kept me waiting and misdiagnosing me forever was livid. University never did

find the biopsy that he said he sent. Now I go for blood tests every other week

and after finally dropping to 5 mg of prednisone my numbers started climbing and

finally doubling. The pain in my ribs and my joints are worse and I don't know

what to think. Is this what a relapse feels like or was I ever really getting

better. This disease certainly keeps you wondering if you have something bad

happening or are you overreacting to a flu virus? After reading other posts I

am wondering if I should also be on imuran. I have been to a Rheumatologist and

all my problems are associated with AIH and luckily not with RA or Lupus. Guess

I will wait for my tests this week. That will make the determination whether I

am paranoid or not. You all know though, when something just doesn't feel

right.

Sorry I know this was lengthy, did I make up for lost time or what!

Cyndi (Colorado)

kathiruud@... wrote:

> Pat:

>

> Has Cyndi been to a rheumatologist? I was referred to one by my

> gastro. I started having big problems with hand, wrist, elbow and

> shoulder pain a couple of months ago. The rheumatologist ran blood

> tests and the rheumatoid level was a little high but not alarming.

> She said that the pain is attributed to autoimmune disease. I take

> 25mgs of VIOXX every day and it seems to help. Also, I have more

> problems when the weather changes. I hope she can find relief

> because pain can really wear you down!

>

> Kathi - Moline

>

>

>