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-- RE: Cholangiocarcinoma

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, don’t ever feel the need to

apologize for “what-ifs,” they are part of your learning curve (what

you call your “thinking process”), not at all an annoyance, & is

actually what makes you a stellar advocate for Noah. Now, as for

obsessing, as long as you can give yourself a break from time to time, that,

too, just might be your way. Everyone’s different… PSCers can’t

in every circumstance be compared to other PSCers, and the same can be said for

their caregivers.

I used to worry soooooooooo stinking much

about Jim getting CC, as he had PSC for sooooooooooo long & we knew his

chances at succumbing to CC could increase alarmingly over the long-term

passing of much time, spiking at about the 20-year mark (or so we were

told). In hindsight, I now realize there were other things I could have

worried about, too, prior to transplant. Not only that, but Jim and I are

in unchartered waters now, post-transplant (a whole new learning curve of stuff,

obviously). I just didn’t know what some of the worrisome things were

until much later on in the game, some when they were no longer an issue. Perhaps

it was God’s way of not allowing us the “unbearable burden”

(although some in this group can recall I felt God had stepped over the line a

bit, as I stood between both hospital gurneys!)

We’re only one woman, though, so we

can only give it our best shot while we’re in that Medical Advocate

saddle. And just give the rest over to God.

Together in the fight, whatever it takes…

well, for some caregivers, perhaps “Whatever it Takes” can on

occasion mean What-Iffing and Obsessing!

Hugs,

Maureen ( & Jim)

From:

[mailto: ] On Behalf Of

Sent: Thursday, January 12, 2006

4:57 PM

To: ; Subject: RE:

Cholangiocarcinoma

See ,

That just makes

me nuts. Are the dosages of immunosuppressants you are on pre-transplant

a lot less than what we would see post-transplant? I have to assume

so. Otherwise, all this Imuran that Noah gets daily…could that

cause him trouble with the CC? I know it takes time for all this, but my

thought here is …he has plenty of time being only 8. I obsess about

things sometimes, and I am sure I annoy some with all my what-ifs, but it is

part of my thinking process.

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