TO NINA

[Guest guest]

Hi Nina,

I remember you because you responded so open and

honestly to my email a few months ago and I felt a

" sister " connection since we're both concerned spouses

and mothers.

So, I was particularly alarmed and worried about your

husband's current " diagnosis " and am wondering what

the latest news is. I wish I could offer some answers

to your questions. I mostly have questions myself.

How are you and your husband doing? I am concerned

and thinking of you...

Lezlee

--- nlr_psc wrote:

> Hi, all, sorry I haven't been very vocal lately - we

> had a new baby

> at the beginning of December and I haven't slept

> very much since

> then. We've recently had some disturbing

> developments in my

> husband's health, though, and I was hoping I could

> get some input

> from others who might have an idea of what is going

> on.

>

> My husband had his third yearly MRCP earlier this

> week, and

> the " history " provided to the interpreting

> radiologist was

> incorrect - it said history of active Hepatitis B

> and cirrhosis,

> neither of which he has been diagnosed with. The

> findings of the

> radiologist, however, were hypertrophy of the left

> lobe, consistent

> with cirrhosis. The biliary tree was visualized as

> completely

> normal and no " nodules " or other indications of

> cirrhosis were

> found. I was not concerned and assumed this was a

> case of tell

> someone what they're looking for and they'll

> necessarily find it,

> except that we spoke with a friend who's a

> radiologist and he said

> that hypertrophy of the left lobe and the " mild

> prominence " of the

> left lobe mentioned in last year's MRCP are BOTH

> signs of cirrhosis -

> that the left lobe usually goes first in cirrhosis

> and one of the

> signs is this appearance in relation to the right

> lobe.

>

> At his liver biopsy two years ago my husband was

> found to have Stage

> II/III fibrosis, but no cirrhosis. Since then, we

> have brought his

> lab tests into normal ranges with high-dose Urso and

> a host of other

> supplements, and he has been entirely asymptomatic.

> My question for

> everyone is - is this possible??? Can he have

> progressed to

> cirrhosis without worsening lab values and with no

> symptoms and no

> evidence on the MRCP of biliary tree abnormality??

> Is it possible

> that he does not have PSC, that it is something

> else, and if so,

> does anyone have any ideas what it could be?

> Autoimmune hepatitis,

> Hepatitis A-Z and 's were all ruled out during

> his initial

> diagnosis, and we have been going on the assumption

> that, since he

> is AMA-negative and ANCA-positive and his untreated

> lab values had a

> cholestatic profile, this was early stage PSC,

> although I guess it

> never really made sense why his fibrosis would be so

> advanced with

> early stage PSC. Does anyone have any ideas??? We

> are of course

> shocked and slightly panicked that a liver

> transplant may be around

> the corner when we're still getting no sleep with a

> newborn - we

> thought things were going so well...

>

> Thanks,

>

> Nina in Philly

>

>

Please visit http://www.cdbaby.com/lezlee

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