Re: Anyone listed at Hopkins?

[Guest guest]

Hi Jackie--

I'm not listed at Hopkins because it's a wee bit far from me. I'm in

northern Virginia and am listed at town.

I don't know anyone who has had a transplant at Hopkins, but I do know

several people who have been treated for cancers, surgeries, etc.

there, and I hear nothing but good things about JHU and its staff.

JHU is one of the best medical schools in the country. You don't get

that way unless you're good in multiple disciplines. You're in good

hands.

Tom

PSC 1999

>

> I've lurked on this newsgroup for awhile

>

> My husband Ken has been recently listed at Hopkins (with a MELD of

> 16). He's been a patient of Dr. Thuluvath's for several years. We

> went to a liver transplant orientation at JHH yesterday, which was

> very educational.

>

> I was just wondering if anyone else is listed in land and/or what

> their experience has been with their 'transplant team'.

>

> Jackie

>

> Ken - UC 1991 after total colectomy, PSC 1999

>

[Guest guest]

Jackie,

I am listed there and also work there. Warren Maley would be my

surgeon. Dr Mezey is my Hepatologist, but I did see Dr Thuluvath when I

was an inpatient in 2005. I think I liked Dr Thuluvath's bedside manner

a little better, but Dr Mezey is fine. Mezey is very by the book - I

had to push him a bit to get on high dose urso.

I am going to the transplant orientation next week. Sounds like the

same one you went to. I have a while to go. My MELD is probably as low

as it gets, maybe a 4?

I have contacts everywhere so if you need something let me know and I

can try to help or get you information.

MZ

Mike Z

Mike Z, 35, PSC 99,

Severna Park, MD -About

Me-

jackie_kosiorek wrote:

I've lurked on this newsgroup for awhile

My husband Ken has been recently listed at Hopkins (with a MELD of

16). He's been a patient of Dr. Thuluvath's for several years. We

went to a liver transplant orientation at JHH yesterday, which was

very educational.

I was just wondering if anyone else is listed in land and/or what

their experience has been with their 'transplant team'.

Jackie

Ken - UC 1991 after total colectomy, PSC 1999

[Guest guest]

Hi Mike -

Did you go to the orientation? What did you think?

We've met Dr. Maley and have heard him speak a few times. I believe

Dr Mezey also spoke at the orientation.

Ken is 39 and was diagnosed in '99 by Dr Thuluvath. It took a

couple ERCP's just to get the diagnosis. He has since had his gall

bladder removed.

We see Thuluvath a couple times a year and have ERCP's done.

Disease was progressing, but seemed to be slow moving. It always

seemed like transplant was in the 'future', but before you know it,

you realize the 'future' is now

Why do you think they have decided to list you now, with such a low

MELD?

What dosage of Urso are you taking?

It's nice to talk to someone who is around the same age as Ken and

is being treated by the same 'team'.

Jackie

> >

> > I've lurked on this newsgroup for awhile

> >

> > My husband Ken has been recently listed at Hopkins (with a MELD

of

> > 16). He's been a patient of Dr. Thuluvath's for several years. We

> > went to a liver transplant orientation at JHH yesterday, which

was

> > very educational.

> >

> > I was just wondering if anyone else is listed in land and/or

what

> > their experience has been with their 'transplant team'.

> >

> > Jackie

> >

> > Ken - UC 1991 after total colectomy, PSC 1999

> >

> >

>

[Guest guest]

HI Jackie,

I did go to the orientation with my wife, Becky. I was originally

thinking of not going since it seems so far off, but I am glad I did. I

learned a few things. When Dr Maley mentioned liver cancer when caught

early and small enough can boost your MELD to 22, I asked the question

if by Liver cancer, cholangiocarcinoma was included in that and he said

no. He was the only one who spoke.

Last time I talked to him he said the Living Donor Transplant program

at Hopkins was not yet fully staffed and operational. Apparently it now

is. Hopkins has really been beefing up their surgical departments in

the past few years. They added Andy Cameron

(http://www.hopkinsmedicine.org/transplant/About/Cameron.html) Son of

Cameron who was Chief of Surgery for many years

(http://www.hopkinsmedicine.org/hmn/W03/feature.cfm) There is a third

surgeon who I don't recall.

Dr Thuluvath was the one who started the push to get listed because I

guess what he saw when I was inpatient for a week back in 05 for a

cholangitis episode and had an ERPC to clear things out. Sometimes I

don't even say I am listed because the MELD is so low. SO far so good.

I am on 2100MG of URSO every day.

Mike Z

Mike Z, 35, PSC 99,

Severna Park, MD -About

Me-

jackie_kosiorek wrote:

Hi Mike -

Did you go to the orientation? What did you think?

We've met Dr. Maley and have heard him speak a few times. I believe

Dr Mezey also spoke at the orientation.

Ken is 39 and was diagnosed in '99 by Dr Thuluvath. It took a

couple ERCP's just to get the diagnosis. He has since had his gall

bladder removed.

We see Thuluvath a couple times a year and have ERCP's done.

Disease was progressing, but seemed to be slow moving. It always

seemed like transplant was in the 'future', but before you know it,

you realize the 'future' is now

Why do you think they have decided to list you now, with such a low

MELD?

What dosage of Urso are you taking?

It's nice to talk to someone who is around the same age as Ken and

is being treated by the same 'team'.

Jackie

> >

> > I've lurked on this newsgroup for awhile

> >

> > My husband Ken has been recently listed at Hopkins (with a

MELD

of

> > 16). He's been a patient of Dr. Thuluvath's for several

years. We

> > went to a liver transplant orientation at JHH yesterday,

which

was

> > very educational.

> >

> > I was just wondering if anyone else is listed in land

and/or

what

> > their experience has been with their 'transplant team'.

> >

> > Jackie

> >

> > Ken - UC 1991 after total colectomy, PSC 1999

> >

> >

>