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A few updates

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Hi Group,

Sorry that I haven't been very active lately. Wednesday morning, my

aunt called to tell us that my great uncle had passed away, (from florida),

and that she would be calling us back later that night with information on

where to send flowers. Later that night, she called back.. and as I was

preparing to get a pen and a piece of paper, she informed me that my great

aunt had passed away that afternoon. My great aunt, and my grandmother (who

I was very close to) looked like twins. After my grandmother passed away, I

became very close to my great aunt, because of the bond that we both shared

with my grandmother. For several years, she had had problems with her heart,

and had broken a hip. I find comfort in knowing that she's in Heaven, and no

longer feeling pain. If you could though, please keep my Father in your

prayers. I can't imagine what he must be going through. Within one year,

he's lost a sister, his wife, his brother, and now an uncle and aunt.

I had my colonoscopy yesterday. It went really well, until I woke up

during the procedure. It was quite painful, but not as bad as waking up with

a tube in your throat. I remember using quite a bit of profanity, and having

my arms restrained by the nurses, until the DR. gave me more meds to put me

back out. My O2 level did drop some, along with my blood pressure, but it

came back up quickly... so I didn't have to stay in recovery as long as I

usually do. Is there another med they can use instead of Demoral (sp?).

Even though this drug can be quite fun <grin>, I seem to have a reaction to

it everytime it is used.

Okay, even though my post is quite long... I would like to remind

everyone how important it is to change subject lines, create a new e-mail

anytime there is a lot of " replies " , and if necessary, send the e-mail

directly to whom it is written. As most of you know, I fought against

turning this group into mainly a " technical " one a few months ago. I really

don't want to lose the support part of the group, and I agree that it's nice

to talk about things that have nothing to do with PSC, but with the group

growing almost daily, it's important to keep the other members in mind when

posting. One thing that I find is helpful, is reading through all of the

mail, deleting the things you don't want to respond to, then trying to

respond to everything else in one e-mail. I try to do this myself, but

sometimes get in a hurry. I don't want to lose any members, or limit the

amount of members for this support group. Each one of you, is what makes

this support group so successful. Also <more nagging> if you haven't filled

out the database, PLEASE DO!

Sorry for going on and on and on and on.........

Love,

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  • 3 weeks later...
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Ezra

Hello, just thought I would like to give you some info about Yale. The

research that is being done at Yale is all Hep C related. The Doctor

involved in this research is Victor Navarro, MD he is also very supportive

of the Ct Chapter of ALF. To my knowledge there are no experts on PSC at

Yale or in the area. or anyone who is particularly interested in this

disease. If anyone knows any differently please let me know.

Reggie(22 year old son has PSC/UC)

Re: A few updates

>Sandy,

>

>You mentioned the other day that you are seeing a doctor at Yale. Since

Yale

>seems to have an esteemed digestive disorders center (one of the 10 or 12

>National Institutes of Health affiliated centers in the country), I thought

>I'd ask which doctor you see there and whether he/she has mentioned

anything

>about liver-related research they may be involved with. Thanks, Ezra

>

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Reggie,

Thank you for sharing that information. About a year ago I looked at Yale's

website (I forget whether it was for the med school or Yale New Haven

Hospital), and found the names of several doctors/faculty who are interested

in biliary disease. Unfortunately when I have tried in the past couple of

days to find the information again the website freezes me out; for some

reason, I cannot access the faculty research pages or even the academic

departments within the med school. So, if you could try to check the site,

perhaps you will have better luck (maybe the problem has something to do with

my browser?), and if you do it would be really helpful if you copy the names

and research interests of the doctors. I think there were at least two and

perhaps three of them who did relevant work. Thanks very much in advance, Ezra

Hello, just thought I would like to give you some info about Yale. The

research that is being done at Yale is all Hep C related. The Doctor

involved in this research is Victor Navarro, MD he is also very supportive

of the Ct Chapter of ALF. To my knowledge there are no experts on PSC at

Yale or in the area. or anyone who is particularly interested in this

disease. If anyone knows any differently please let me know.

Reggie(22 year old son has PSC/UC) >>

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