aggravated

[Guest guest]

Well, I finally heard from the hepatologist I saw at Vanderbilt in

Nashville, TN on Apr 29th. Basically, the visit was simply a big

waste of time, energy, and money in my opinion. I have a copy of

the letter he wrote to my pcp and rheumy. His nurse (or someone from

his office) called this morning and basically told me the same things

that are in the letter. Essentially the hepatologist said that I have

chronic hepatitis, most likely autoimmune, and it would be reasonable

to continue treatment with prednisone based immunosupression using the

lowest dose of prednisone which will maintain the ALT/AST levels at

less than twice normal. He said if doses of prednisone greater than

5 mg daily are required to achieve this then introducing imuran will

be reasonable. He said I should have a hep A and hep B vaccination,

but not until I am on less than 5 mg prednisone daily. He said he felt

like the elevated liver enzymes during the times I'm having the severe

RUQ abdominal pain, nausea, and vomiting either represent pancreatitis

or a bile duct obstruction. He said he would recommend cholangiography

if my pain episodes are associated with transient elevations of my liver

tests. He did go on to say that my anatomy following gastric bypass

surgery would have to be clarified to know if ERCP would be possible.

He said, " Otherwise, recommendations for her care are supportive. " He

would like to see me in a year. I did ask the nurse about lowering

prednisone and adding imuran since I am on a dose of prednisone higher

than 5 mg a day and my liver enzymes are NOT staying less than 2 times

the normal limit. She said that he would probably say that imuran should

be added and the prednisone dropped by 1 mg a month, but that she guessed

he was going to let my other doctors decide what to do.

Okay, now for my aggravation. On Apr 29th when I saw Dr. Raiford, my AST

was 41 and ALT was 106. That would make the ALT only slightly above normal,

but the ALT almost 3 times normal. This was on a day that I was not having

severe pain, but the enzymes were still elevated. Based on his

recommendation of keeping me on enough medication to keep the liver

enzymes less than two times the normal limit, I'd have to say that 10 mg

of prednisone is definitely not doing it. However, I assume Dr. Raiford

really wasn't very concerned that the prednisone is not keeping the enzymes

down because he ended the letter saying that I would contact my pcp and

rheumy for my continuing care.

As I was afraid after my initial visit with the hepatologist, he has no

intention of addressing any problems outside the liver. Possible problems

with the pancreas/bile duct are somebody else's problem (SEP).

ERCP is not possible because of my rerouted intestines from the gastric bypass.

I've had 3 and the GI could only get the end of the bile duct. He couldn't

actually see the bile duct, pancreas, or pancreatic ducts. I ran across a

website from Harvard Medical School that talked about a percutaneous

transhepatic cholangiography (PTCA).

http://www.health.harvard.edu/fhg/diagnostics/percutaneous/percutaneous.shtml

In this test they inject die into the ducts of the liver and then do x-rays

or a CT scan. Doesn't sound like fun but not as bad as an ERCP. However,

it would be next to impossible to schedule a test like that during one of

my episodes of severe pain. I'm not even sure if that test is done anywhere

around here.

I feel like I am back at square one. The hepatologist's nurse said that I

needed to have my liver enzymes checked again in the next week or two during

a time that I'm not having the severe pain and that I need to see my rheumy

within a couple of weeks. Well, that's not gonna happen. My appt with her

is the end of June. I called today to see if they could see me sooner. She's

been out of the office and won't be back til Tuesday. The girl said she'd

tell the Dr., but that they really didn't have any openings any sooner. So,

I guess I'll just hang in there til the end of June!

I do believe that the hepatologist is probably correct about the episodes of

the RUQ pain are caused by a bile duct obstruction or pancreatitis. However,

what do I do to make it better? For now, I guess I just keep taking drugs

and deal with it!

Well, it's 11:30 p.m. and I have to be at the doctor's office in the next

town at 8:30 a.m. tomorrow. This is thanks to my rheumy not bothering to

send any information to SS for my disability application. They got info

from every one of my other doctors but because she didn't send them info,

I have to see one of their doctors. Do you think he's going to be able to

look at me and see that I have AIH, lupus, diabetes, clotting disorder, and

recurrent pancreatitis?

Well, I'm going to bed!

W