Mayo Clinic on Monday 9/17

[Guest guest]

Hello Everyone,

I'm off to Rochester, MN next week for my second LTx evaluation (my

first was in Louisville, KY). Another week of poking needles, Imaging

with contrast media, and consultations. Fortunately they have scheduled

an ERCP and there's yet another chance they can get through my CBD.

Does anyone have suggestions for this trip?

Please post if you've been there or are listed with Mayo.

Liz: Thank you for responding to my last posting regarding Mayo.

-45

PSC, Crohns 2000

[Guest guest]

Great place to be - they were able to dilate and stent my previously

" unstentable " CBD in 2001. When I mentioned to the endoscopist that they

couldn't get their tools in for access at the local Minneapolis hospital, he

responded that they have every tool invented, including many they'd developed

themselves.

Took about a 1/2 hour. I stayed at St. 's (after a midnight ambulance ride

from Minneapolis) and the ERCP was done at Methodist, I think. My wife stayed

at a hotel right across the street for a couple of nights. The nursing staff

was absolutely outstanding. I developed post-ERCP pancreatitis. The nurse

(Steve) hauled the resident in to prescribe pain meds - he could tell I was

really hurting and couldn't get the resident's attention otherwise.

It is a teaching hospital, so you'll get lots of interesting visitors. See

message 22220 and 22989 for my experiences.

Arne

---- memcc238 wrote:

=============

Hello Everyone,

....Fortunately they have scheduled an ERCP and there's yet another chance they

can get through my CBD...

[Guest guest]

,

I live in Rochester, MN and have all my care done at Mayo. My wife also

works for St. 's Hospital in Rochester. Mayo is a great place to be

cared for. I'm not sure where you're staying but the Kahler is

connected...but it's spendy. If you need any travel directions or other

advice send me a message:

jfrein@...

Jed

PSC 5/07

[Guest guest]

, Any one of the hotels on the main drag in Rochester are fine. Remember to tell them you are there for testing at Mayo. You will get a discount. You don't need a car while you are there (Mayo is a very reasonable cab ride from the airport) although getting outta town at night for a movie (closest movie complex is about a 10-15 minute car ride) or just to roam around the area helps clear the mental cobwebs. During the day, you can walk most places and you will find yourself using the buses that run frequently up and down the strip connecting hotels, the clinic and St. 's. As for food, my daughter and I agreed that Mayo is devoid of any good restaurants but since she was sipping Slurpies most of the time we were there, that never became a big issue (although I was starving!) We were just so grateful to be there, "fine dining" was the least of our concerns!! Good luck, Mom to LIbby, 22 years old, psc /03, grad student at USC (Go Trojans), and Mayo veteran from summer/03.

[Guest guest]

,

Thanks for the input. It's all good intel. I've got a room at the

Residence Inn - Marriott which is close to the Mayo Clinic.

Please keep me in your prayers that I get a diagnosis of no cancer.

I'll chime in after my visit.

Hmmm ... USC ranked #1 ... University of Louisville ranked #9

GO CARDS!!!

- 45

PSC, Crohns 2000

>

> ,

> Any one of the hotels on the main drag in Rochester are fine.

Remember to tell them you are there for testing at Mayo. You will get

a discount. You don't need a car while you are there (Mayo is a very

reasonable cab ride from the airport) although getting outta town at

night for a movie (closest movie complex is about a 10-15 minute car

ride) or just to roam around the area helps clear the mental cobwebs.

During the day, you can walk most places and you will find yourself

using the buses that run frequently up and down the strip connecting

hotels, the clinic and St. 's. As for food, my daughter and I

agreed that Mayo is devoid of any good restaurants but since she was

sipping Slurpies most of the time we were there, that never became a

big issue (although I was starving!) We were just so grateful to be

there, " fine dining " was the least of our concerns!!

>

> Good luck,

>

> Mom to LIbby, 22 years old, psc /03, grad student at USC (Go

Trojans), and Mayo veteran from summer/03.

>

[Guest guest]

Arne,

Thank you, Sir. You've definately given me hope. Three previous

attempts at getting through my blocked CBD leave me sceptical about

ever getting through. I'm hoping the Mayo team can do their magic.

I also am remaining hopeful that there is no cancer in the blockage,

that it's the PSC scarring.

Thanks also for reminding me that I can search past postings for

information. Sometimes I'm a dunderhead.

- 45

PSC, Crohns 2000

>

> =============

>

> Hello Everyone,

>

> ...Fortunately they have scheduled an ERCP and there's yet another

chance they can get through my CBD...

>

[Guest guest]

Jed,

Thanks for the information. I don't know much about the Kahler but

it's probably a good place to stay. I'm at the Residence Inn. How

fortunate to have this lousey disease but to live in Rochester.

Thanks again ...

- 45

PSC, Crohns 2000

>

> ,

>

> I live in Rochester, MN and have all my care done at Mayo. My wife

also

> works for St. 's Hospital in Rochester. Mayo is a great place

to be

> cared for. I'm not sure where you're staying but the Kahler is

> connected...but it's spendy. If you need any travel directions or

other

> advice send me a message:

>

> jfrein@...

>

> Jed

> PSC 5/07

>

[Guest guest]

Hi --

You made a good choice with the Residence Inn. Kahler is convenient,

but that's it...I found it to be pretty run down and overpriced.

A couple other things while you're there: First, make sure you visit

the Transplant House. It's right on one of the Mayo bus lines. In

addition to offering a great, inexpensive place for a caregiver to

stay during transplant times ($25/day), you can also stay there, space

permitting, during routine visits and follow ups. Plus, if they are

full, they have arrangements with other local hotels at discounts that

are deeper than the normal Mayo patient discounts.

Next, if your appetite is up to it, get a pannekuchen at the

restaurant located at the Days Inn. It's like a huge light pancake

stuffed with fruit. It tastes like a little piece of heaven, and it's

fun to see the wait staff running out with the plates singing their

pannekuchen songs.

The Mayo Clinic area is a great place to walk, weather

permitting...take advantage of the nice weather while it's nice outside.

Good luck to you...you will be blown away by the level of care and

concern by absolutely everyone on the Mayo staff...you're in great

hands. They fixed a bunch of issues with me last April, greatly

improving the quality of my life, and I'm almost eagerly looking

forward to my next visit there in November.

Tom

PSC 99

> >

> > ,

> >

> > I live in Rochester, MN and have all my care done at Mayo. My wife

> also

> > works for St. 's Hospital in Rochester. Mayo is a great place

> to be

> > cared for. I'm not sure where you're staying but the Kahler is

> > connected...but it's spendy. If you need any travel directions or

> other

> > advice send me a message:

> >

> > jfrein@

> >

> > Jed

> > PSC 5/07

> >

>

[Guest guest]

Tom,

What types of problems did they fix? I'm dealing with fatigue and nausea,

and it's really affecting the quality of my life. Would Kaiser insurance

cover this?

-Marie

>

>Reply-To:

>To:

>Subject: Re: Mayo Clinic on Monday 9/17

>Date: Sat, 15 Sep 2007 21:07:28 -0000

>

>Hi --

>

>You made a good choice with the Residence Inn. Kahler is convenient,

>but that's it...I found it to be pretty run down and overpriced.

>

>A couple other things while you're there: First, make sure you visit

>the Transplant House. It's right on one of the Mayo bus lines. In

>addition to offering a great, inexpensive place for a caregiver to

>stay during transplant times ($25/day), you can also stay there, space

>permitting, during routine visits and follow ups. Plus, if they are

>full, they have arrangements with other local hotels at discounts that

>are deeper than the normal Mayo patient discounts.

>

>Next, if your appetite is up to it, get a pannekuchen at the

>restaurant located at the Days Inn. It's like a huge light pancake

>stuffed with fruit. It tastes like a little piece of heaven, and it's

>fun to see the wait staff running out with the plates singing their

>pannekuchen songs.

>

>The Mayo Clinic area is a great place to walk, weather

>permitting...take advantage of the nice weather while it's nice outside.

>

>Good luck to you...you will be blown away by the level of care and

>concern by absolutely everyone on the Mayo staff...you're in great

>hands. They fixed a bunch of issues with me last April, greatly

>improving the quality of my life, and I'm almost eagerly looking

>forward to my next visit there in November.

>

>Tom

>PSC 99

>

>

> > >

> > > ,

> > >

> > > I live in Rochester, MN and have all my care done at Mayo. My wife

> > also

> > > works for St. 's Hospital in Rochester. Mayo is a great place

> > to be

> > > cared for. I'm not sure where you're staying but the Kahler is

> > > connected...but it's spendy. If you need any travel directions or

> > other

> > > advice send me a message:

> > >

> > > jfrein@

> > >

> > > Jed

> > > PSC 5/07

> > >

> >

>

>

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[Guest guest]

Tom,

Thanks for the feedback. I'll do as you say with the Transplant

House and the pannekuchen meal. I do have a good appetite. And I'm

looking forward to getting there later today.

Thanks again ...

- 45

PSC, Crohns 2000

> > >

> > > ,

> > >

> > > I live in Rochester, MN and have all my care done at Mayo. My

wife

> > also

> > > works for St. 's Hospital in Rochester. Mayo is a great

place

> > to be

> > > cared for. I'm not sure where you're staying but the Kahler is

> > > connected...but it's spendy. If you need any travel directions

or

> > other

> > > advice send me a message:

> > >

> > > jfrein@

> > >

> > > Jed

> > > PSC 5/07

> > >

> >

>

[Guest guest]

I was not aware of those figures on live liver transplants. Very interesting.Thanks Tim. Re Mayo: Everyone should get to experience it, like the Grand Canyon or the Big Apple. Don Please be a blood/organ donor

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

,

Good luck with your visit and let us know how it went!

Also-if you go to the Panacooken let me know if they surprised you. If

you order an actual " Panacooken " they come out to your table and shout

that! I'm not even sure what that dish exactly is. I guess I have to

feel somewhat lucky to live in Rochester and have the disease...if you

are in town and want to get some lunch email me at jfrein@....

Jed

PSC 5/07