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Re: Glenn + Janet

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Biddy,

My liver enzymes are not normal..but they are not extremely elevated.

Only slightly elevated. I think we discussed in this group before that the

liver enzymes do not neccessarily determine how much damage is being done to

the liver. Correct me if I am wrong anyone=) (Maybe it was in the other

group that I read that).

Love,

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Biddy,

I have had PSC for 14 years. During that time period I have gone

through stretches with normal liver readings, but the disease still progresses...the

duct continues to become inflamed and scarred over. I used to think

Wow! I may lick this disease, when my enzymes were normal, or close to

it, and then feel really down when they went back up...Now, I expect the

fluctuation. Even with cirrhosis setting in, my bili sometimes runs

close to normal (1.8 at last reading), and it has been as high as 9.0 in

the past(the week before I was listed--March 98). So, I don't think

that liver readings say much about the diagnosis. An x-ray of the

ducts taken by use of the ERCP is usually the way the disease is diagnosed

(if I understand this correctly)...I hope this helps.

Biddy Santon wrote:

Hi guys!

I have known this for a long time -- don't vent your anger until you have

written it down and then don't mail it!

I did what I don't do. I also said things that I didn't mean; for instance,

364 days of the year I SMILE. Why? For one it makes me feel better and

two it makes people wonder what you are up to!!

When I was first diagnosed with this disease someone asked me if I said

"why me?" I told her that never, I say "why not me?"

I feel so blessed. So many children and elderly are suffering much, much

more than I. All I have to do is go out and I can see so many people much

worse off than I.

The diabetes thing just overwhelmed me! My husband has had diabetes for

several years and it isn't something that is great to live with. Thank

God he has a new doc that did his fellowship at the NIH in Arizona or New

Mexico. Understand that this is the best place for docs that are going

to specialize in diabetes because the Native Americans in one of those

two places have the highest incidence of diabetes in the world! Anyway,

is down from 120 units of insulin a day to 40 within one month.

The doc said that insulin is the worst thing that can happen to the body!

I truly am very upbeat and why not? I am not like the lady whose husband

has PSC at age 29! Now that is a hard thing to handle. I am 56-years old

and have lived a very good life with more friends than anyone else can

imagine. I have two great sons and a fantastic mother! What do I have to

be sad about? Having PSC?Indeed

not! In fact, when and if it becomes my time to receive a liver I just

may not have it done. There are so many young people that need livers and

as of now, they are very rare to come by.

I have asked this before, but does anyone out there have normal liver readings?

I have had somewhat normal readings for the last 3 times at Duke, but the

doc says I still have PSC. He can't explain it very well and I don't understand

it. I hope it means my liver is rejuvenating itself. We all have that to

look forward to. You just never know!

Hugs

Biddy

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Hi Biddy,

Hadn't sent a message to welcome you yet. I go for long periods just reading the messages. Just wanted to mention that my Liver enzymes have been within normal limits recently, too--attributable to Actigall in my case, I think. Unfortunately, it doesn't mean the PSC is gone, but I do like to imagine that there is less damage occurring to the liver and bile duct cells now. I figure that both prayer and some positive imagery help me wih this thing ! Take Care & Welcome.

H.

-----Original Message-----From: Biddy Santon Sent: Saturday, June 05, 1999 9:12 PMTo: egroupsSubject: Glenn + Janet

Hi guys!

I have known this for a long time -- don't vent your anger until you have written it down and then don't mail it!

I did what I don't do. I also said things that I didn't mean; for instance, 364 days of the year I SMILE. Why? For one it makes me feel better and two it makes people wonder what you are up to!!

When I was first diagnosed with this disease someone asked me if I said " why me? " I told her that never, I say " why not me? "

I feel so blessed. So many children and elderly are suffering much, much more than I. All I have to do is go out and I can see so many people much worse off than I.

The diabetes thing just overwhelmed me! My husband has had diabetes for several years and it isn't something that is great to live with. Thank God he has a new doc that did his fellowship at the NIH in Arizona or New Mexico. Understand that this is the best place for docs that are going to specialize in diabetes because the Native Americans in one of those two places have the highest incidence of diabetes in the world! Anyway, is down from 120 units of insulin a day to 40 within one month. The doc said that insulin is the worst thing that can happen to the body!

I truly am very upbeat and why not? I am not like the lady whose husband has PSC at age 29! Now that is a hard thing to handle. I am 56-years old and have lived a very good life with more friends than anyone else can imagine. I have two great sons and a fantastic mother! What do I have to be sad about? Having PSC?

Indeed not! In fact, when and if it becomes my time to receive a liver I just may not have it done. There are so many young people that need livers and as of now, they are very rare to come by.

I have asked this before, but does anyone out there have normal liver readings? I have had somewhat normal readings for the last 3 times at Duke, but the doc says I still have PSC. He can't explain it very well and I don't understand it. I hope it means my liver is rejuvenating itself. We all have that to look forward to. You just never know!

Hugs

Biddy

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