Re: Preserving mom's sanity/Trevor and Katy

[Guest guest]

Trevor, I'm so glad you are working with your mom, because otherwise she'll go

nuts! Not

to mention the benefit of preserving your own health, of course.

Both youth and PSC work to lure you into a false sense of security. I was told I

had years

before it became a problem and didn't get too upset when I missed doses. It's

hard to

believe you have a disease when you feel fine. But you have to remain vigilant

and get

regular care, or your liver can go beyond the point where an ERCP can rescue it

before you

ever notice there's anything wrong. So early detection of bile duct strictures

is KEY, with

regular blood tests for liver function and annual MRCPs. I failed to get an

annual MRCP for

3 years and got a stricture that knocked out the left lobe of the liver, but I

still felt fine. It

took 3 ERCPs to finally open it, but now my liver is functioning better than it

has in years.

Urso and fish oil are important because the bile buildup is toxic, and causes

inflammation

of the bile ducts. Urso keeps it moving, fish oil reduces inflammation, so that

reduces

scarrring and strictures. Urso may inhibit cholangiocarcinoma (not clinically

proven, but a

positive trend) and cholangiocarcinoma is hard to detect early, and deadly when

detected

late.

About the insurance gap: Don't you have some period of time to apply for

benefits from

the old company under COBRA- how long is that grace period? I thought it was

more than

30 days- do you know for sure? Because if you apply now, you will have to pay

retroactively, but you will also have coverage retroactively. They can't deny

you. If you

were insured by the new job but they didn't tell you, you can submit the bills

after the fact.

Also true for meds if you have the receipt (the pharmacy can give you a copy of

the receipt

if you lost yours). Way cheaper than ERCP out of pocket.

Good luck, and hug your mom, because she loves you.

Martha (MA)

> Greetings, this is my first time using a yahoo group, so hopefully I'm

> > doing this right.

> >

> > My name is Trevor, and I was diagnosed with PSC in August '06. I've

> > been experiencing some symptoms lately, and an MRCP and CT scan on

> > Thursday showed that my gall bladder was distended, so now I'm on

> > antibiotics for 10 days. If the antibiotics don't seem to help then I

> > expect I will have an ERCP.

> >

> > My mother has been a part of this group since I was diagnosed, so you

> > may have heard about me already. I believe her username is inkywretch.

> > I have already gotten a lot of very helpful information through her,

> > so I'm sure that being a part of the group will be good for me. " Thank

> > you! " to all of you in advance.

> >

> >

> >

> >

> >

> >

> > ---------------------------------

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> >

>