Cleveland Clinic

[Guest guest]

Hi,

I sure wish I could get to CA. but iyid unaffordable. I'm not sure I will

even gp back to Cleveland! I am to see a PULM and PSYCH, but Dr. C took

blood and probably make a report from that. I still cannot get over how I

was rushed in and out! However, I'm within driving distance to Dr. Lerners

as I am in MI.

CHristie

tab@...

At 07:53 AM 7/5/99 -0400, you wrote:

>From: rhbailey@...

>

>Dear Christie,

>

>I'm sorry that you had a bad experience at the Cleveland Clinic. I feel

>guilty because I supported the idea of your going there, based on a good

>experience my friend had there. Now I realize that I didn't mention that my

>friend was in a research study. I think that makes a difference in how you

>are treated.

>

>So, perhaps you should not try to see Dr. Lerner unless you can get into a

>study. If you are up to traveling, a lot of people have reported good

>experiences at Center for Special Immunology in Irvine, California.

>

>Sue B.

>

>

>

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

[Guest guest]

What kind of reputation does Dr. Lerner have? Do you know what kind of tests

he does, and what kind of treatments he's into?

Jennie in Marquette

[Guest guest]

>Beth or Christie,

>

>Would one of you mind posting contact info for the Cleveland Clinic: Dr.

>Cohen's full name, address, phone number, website, email, etc. Thanks.

>>Tim

Bruce Cohen, MD

Dept of Neurology

9500 Euclid Ave

Cleveland, OH 44195

216-444-9182

I called when doc suggested mitochrondrical myopathy. Although he took it

back, I am persuing workup anyway. Also see http://www.iwindow.com/mito/

for links and info.

Good luck,

Christie

[Guest guest]

Jerry,

thanks for the idea of the Cleveland Clinic. It would be about a 4.5 hour

drive for me, but my mom lives in Medina, OH, just about a half hour from

there. When I asked my gastro/hep about it he said he didn't know the name

of anyone there. He said he'd just have to pick one from a list. Do you

have any names at the Cleveland Clinic? I could call the ALF, but they

would just give me a list as well I'm sure. I'm looking for a personal

referral so I know I would go to someone who was helpful and knowledgeable.

My gastro/hep is knowledgeable, I'm sure, but not very helpful or

informative. He seems to bothered to answer my questions... Last night I

got the name of a Dr. at U of Michigan.

thanks again,

Beth, AIH, 10/00, MI

[ ] Beth

> Beth ...... contact the American Liver Foundation (ALF) and ask for

> referals in your area........

> How far are you from Cleveland? The Cleveland Clinic Foundation is one

> the best hospital facilities in the world. Those of you in Fla. might

> know that the clinic has a branch in Ft. Lauderdale. They are among the

> top 5 transplant centers anywhere.

> Jerry

>

>

>

>

[Guest guest]

Beth.... The head of the gastroentrology/hepatology dept. is Dr. Wm.

Carey, who is on my transplant team

and whom I`ve seen many times.... I also have a gastro. here in town

that I see regularly. His name is DR. Ram Bandi and I credit him with

saving my life (along with some help from God).... When I was Dx`d with

end stage cirrhosis my mother called ALF and they recommended him. When

it was apparent that only a transplant would save me- he refered me to

the clinic. They are absolutely the best.

The best thing for you to do is to go to the clinic`s home page---I

don`t know the web address, but type in Cleveland Clinic Foundation in

search and it`ll be there.

Once you get the home page click on the site map and then scroll down to

services

and click on the gastroentrolgy department. It has all kinds of info

there including an 800 number for more information. The clinic is world

reknowned

and has a top notch staff regarding liver diseases.

By the way I live on the west side of Akron near the Montrose area and

am maybe 10 minutes from Medina --- I know that area very well as I`ve

lived in Akron, Copley or Bath all my life---57yrs. Feel free to conact

me personally any time with any questions and if you want I`ll give you

my phone number to call when you visit mom....it might not even be long

distance..... keep in touch

love and serenity

Jerry

AIH `00

Transplant `95

[Guest guest]

Hi Jerry,

Sorry it's taken me so long to write back. Geez, the busy weeks have flown.

Thanks for the info on the docs at the Cleveland Clinic. My insurance

prefers me to stay in state, so I'm going to see Dr. Lok at the

University of Michigan Health Center on Jan. 31st. I'm excited to go.

She's the director of the Transplant Team and Hepatology area. She sounds

incredibly knowledgeable. Just want to go and confirm my diagnosis of AIH

and ask lots of questions that I can't seem to get my gastro/hep to take the

time with me to answer. My HMO, Blue Care Network, has U of M as an

approved center for liver transplantation, so I figure it would be good to

get in with them now just in case we have to go that route someday....

Anybody heard of Dr. Lok?

I went to my mom's in Medina this weekend. Thought about writing you to see

if we could hook up. The weekend flew so fast...we only stayed until 3:30

Sat. It's about 4.5 hours home. Saw lots of family. My whole family

lives in Medina. My uncle is the fire chief of Medina. Maybe you've heard

of him...he's in the paper alot...Bill Herthneck. He's my mom's brother.

Did you ever know any kids in Medina when you were growing up? Both my

folks were from there... Do the names Herthneck, Cronk, or Bryenton ring a

bell for you? My dad is deceased now, but he'd be 60 and my mom is 58 in

January. Don't know how old you are....maybe you knew some of my family

back in the days?

If you want to email me with your phone number, I can put it in my datebook

and next time we're in Medina I can give you a jingle... Maybe we could

meet at Skyway for a great burger and their famous onion rings... My trip

isn't complete until we eat there at least once!

take care,

Beth Walters, AIH 10/00, Portage, MI

bccj@...

Re: [ ] Cleveland Clinic

> Beth.... The head of the gastroentrology/hepatology dept. is Dr. Wm.

> Carey, who is on my transplant team

> and whom I`ve seen many times.... I also have a gastro. here in town

> that I see regularly. His name is DR. Ram Bandi and I credit him with

> saving my life (along with some help from God).... When I was Dx`d with

> end stage cirrhosis my mother called ALF and they recommended him. When

> it was apparent that only a transplant would save me- he refered me to

> the clinic. They are absolutely the best.

> The best thing for you to do is to go to the clinic`s home page---I

> don`t know the web address, but type in Cleveland Clinic Foundation in

> search and it`ll be there.

> Once you get the home page click on the site map and then scroll down to

> services

> and click on the gastroentrolgy department. It has all kinds of info

> there including an 800 number for more information. The clinic is world

> reknowned

> and has a top notch staff regarding liver diseases.

> By the way I live on the west side of Akron near the Montrose area and

> am maybe 10 minutes from Medina --- I know that area very well as I`ve

> lived in Akron, Copley or Bath all my life---57yrs. Feel free to conact

> me personally any time with any questions and if you want I`ll give you

> my phone number to call when you visit mom....it might not even be long

> distance..... keep in touch

> love and serenity

> Jerry

> AIH `00

> Transplant `95

>

>

>

>

[Guest guest]

Dear Beth and Carl:

I too have end stage cirrhosis, but the docs in FL really don't give me much

encouragement re: sites to find information and appropriate phycicians. Do

you know enough about the Mayo clinic in ville to refer any good

docs? I am a widowed RN. age 45 with 2 kids. I don't want to live with

this fatigue, joint pain and itching all my life.

I send my blessings,

dag

[Guest guest]

HI Beth .... I wondered what happened to you..... The U of M sounds like

the place for you......I`m prejudiced by the CCF (see my reply to Dag)

but that doesn`t mean other centers aren`t equally as fine. ... I have

some reservations about UofM as I graduated from Ohio State

University... but I`m sure tey are ill founded (GO BUCKS) I`m anxious to

hear what you find out.

I don`t remember any kids from Medina but I`m about your parents

age(I`ll be 58 Mar. 4) In all likelyhood I`ve met your Uncle. I`m an

Electrical Contactor and for many years we specialized in fire repair

and I went to many fires in Medina to restore power , my memory wth

names is going the way of senior moments. Skyway was THE hangout for us

in highschool. I spent lots and lots of evenings there cruising and

hanging out. I still go there often. They have the BEST onion rings in

the world. I always have Hamburger mustard,pickle,and onion-butter plus,

onion rings, and a Californian--- just like I did 40 yrs. ago and they

still taste the same I live a hop skip and jump from there on road

near Sand Run just east of the Summit Mall. Small world.

I`ll send you my phone no. offline call when you`re in town and we can

go there for

a feast.

love and serenity jerry

Hi Jerry,

Sorry it's taken me so long to write back. Geez, the busy weeks have flown.

Thanks for the info on the docs at the Cleveland Clinic. My insurance

prefers me to stay in state, so I'm going to see Dr. Lok at the

University of Michigan Health Center on Jan. 31st. I'm excited to go.

She's the director of the Transplant Team and Hepatology area. She sounds

incredibly knowledgeable. Just want to go and confirm my diagnosis of AIH

and ask lots of questions that I can't seem to get my gastro/hep to take the

time with me to answer. My HMO, Blue Care Network, has U of M as an

approved center for liver transplantation, so I figure it would be good to

get in with them now just in case we have to go that route someday....

Anybody heard of Dr. Lok?

I went to my mom's in Medina this weekend. Thought about writing you to see

if we could hook up. The weekend flew so fast...we only stayed until 3:30

Sat. It's about 4.5 hours home. Saw lots of family. My whole family

lives in Medina. My uncle is the fire chief of Medina. Maybe you've heard

of him...he's in the paper alot...Bill Herthneck. He's my mom's brother.

Did you ever know any kids in Medina when you were growing up? Both my

folks were from there... Do the names Herthneck, Cronk, or Bryenton ring a

bell for you? My dad is deceased now, but he'd be 60 and my mom is 58 in

January. Don't know how old you are....maybe you knew some of my family

back in the days?

If you want to email me with your phone number, I can put it in my datebook

and next time we're in Medina I can give you a jingle... Maybe we could

meet at Skyway for a great burger and their famous onion rings... My trip

isn't complete until we eat there at least once!

take care,

Beth Walters, AIH 10/00, Portage, MI

bccj@...

Re: [ ] Cleveland Clinic

> Beth.... The head of the gastroentrology/hepatology dept. is Dr. Wm.

> Carey, who is on my transplant team

> and whom I`ve seen many times.... I also have a gastro. here in town

> that I see regularly. His name is DR. Ram Bandi and I credit him with

> saving my life (along with some help from God).... When I was Dx`d with

> end stage cirrhosis my mother called ALF and they recommended him. When

> it was apparent that only a transplant would save me- he refered me to

> the clinic. They are absolutely the best.

> The best thing for you to do is to go to the clinic`s home page---I

> don`t know the web address, but type in Cleveland Clinic Foundation in

> search and it`ll be there.

> Once you get the home page click on the site map and then scroll down to

> services

> and click on the gastroentrolgy department. It has all kinds of info

> there including an 800 number for more information. The clinic is world

> reknowned

> and has a top notch staff regarding liver diseases.

> By the way I live on the west side of Akron near the Montrose area and

> am maybe 10 minutes from Medina --- I know that area very well as I`ve

> lived in Akron, Copley or Bath all my life---57yrs. Feel free to conact

> me personally any time with any questions and if you want I`ll give you

> my phone number to call when you visit mom....it might not even be long

> distance..... keep in touch

> love and serenity

> Jerry

> AIH `00

> Transplant `95

>

>

>

>

[Guest guest]

Debbie

Where are you located? Are you anywhere near Cleveland? I have had great experiences with them as has Cheryl and Randy. Please feel free to ask away.

[Guest guest]

What is yur viral load like? Depeneding on which is doing more dammage is

what they will treat.

I also have hep c. I see my gastro for the first time tommorow finaly after

months of waiting.

Ama

[ ] Cleveland Clinic

>I have an appointment 4/4/01 with Dr. Carey. Haven't been there in

>over 10 years. Really scared-all of a sudden I worry that I am at end

>stage. I now am paranoid that the extra weight I have put on is

>ascites(any way to recognize the difference?), that I am about to

>bleed internally(what are symptoms or warning signs for variceal

>bleeding?)

>The scariest thing is that I can't take imuran or prednisone for AIH

>because that would exacerbate the Hep C which calls for interferon or

>similar treatment! It seems that I am doomed-unable to treat either.

>I am fairly new to this group. Am so glad I found you. I can't talk

>about this with anyone I know. Please excuse my fears & paranoia. I

>thought everything was under control; lab tests were slightly

>elevated at times but I still worked 7 days a week, many hours, on 6-

>7 hours sleep. Don't really do anything relaxing or exercise or eat

>right-I get all my satisfaction from work. I am also afraid to have a

>biopsy again becaue the last time they hit my " pleur " and I could

>hardly draw breaths for several days. Thanks for listening. Debbie

>

>

>

>

[Guest guest]

> Debbie

>

> Where are you located? Are you anywhere near Cleveland? I have

had great

> experiences with them as has Cheryl and Randy. Please feel free to

ask away.

>

>

Whoops! I thought I replied to you, , but I don't see my

message posted. I am 3 hours south of Cleveland. Did anyone see Dr.

Carey? Were the experiences with treatment of AIH or transplantation?

Thanks, Debbie

[Guest guest]

Debbie .... DR. Carey is my doctor at the Clinic.... I was transplanted

there almost 6 years ago . The Clinic is the greatest..I live in Akron.

Ask what you want.

Jerry

Tx 95

AIH 00

> Debbie

>

> Where are you located? Are you anywhere near Cleveland? I have

had great

> experiences with them as has Cheryl and Randy. Please feel free to

ask away.

>

>

Whoops! I thought I replied to you, , but I don't see my

message posted. I am 3 hours south of Cleveland. Did anyone see Dr.

Carey? Were the experiences with treatment of AIH or transplantation?

Thanks, Debbie

[Guest guest]

Debby -- re bio page -- I think there is one, but I saw it only once and couldn't find it again. Harper

[Guest guest]

Jerry, re bio page -- I saw it when I was registering, perhaps the following day, too. I've never become very familiar with the system, and I couldn't find it again. Also, I didn't look very hard. Most people had minimal information listed -- perhaps only name and e-mail. Others gave extremely detailed information -- I think one person entered his street address. I know there was a provision for editing one's bio. I registered back in September, I think, and it's possible access has changed.

[Guest guest]

Jerry, in relation to your comment, "and then the thread is lost." Maybe you have some ideas for me on a question I have about the Subject line. I've never been sure what would happen if, for example, I changed the header of this message from "Cleveland Clinic" to "Subject Lines." I'm often tempted to give my response a more specific name than that in the original subject line, but I don't know if changing a subject line makes it difficult for people to follow a string on the website. (I usually look at LiverSupport postings in e-mail, and I haven't figured out the larger system very well.)

Don't feel obligated to answer (or even figure this out) if I haven't been comprehensible!

[Guest guest]

Good to hear all the positives about Cleveland!

I saw my hematologist today to go over the most recent labs. He wants

to find something cancer related (low platelets ) & wanted to do bone

marrow biopsy but I think it is more AIH related & am going to wait &

see what Dr. Carey says. I am scared to have a liver biopsy again

because of my last experience (pierced the pleur & I couldn't

breathe!)I am also afraid that there won't be options for me since I

have both Hep C and AIH. That is why I have been " observed " but

taking no medicines. Thanks for your support! I will be in Cleveland

April 4th in the evening awaiting an 8:15 a.m. appointment.If anyone

wants to get together, I'd love the company. My husband is coming but

he has a hard time dealing with illness. I am trying to " meet " via

the emails the members-I wish there was a little bio page so I could

get names & dx straight! Debbie

> > Debbie

> >

> > Where are you located? Are you anywhere near Cleveland? I have

> had great

> > experiences with them as has Cheryl and Randy. Please feel free

to

> ask away.

> >

> >

>

> Whoops! I thought I replied to you, , but I don't see my

> message posted. I am 3 hours south of Cleveland. Did anyone see Dr.

> Carey? Were the experiences with treatment of AIH or

transplantation?

> Thanks, Debbie

>

>

>

>

[Guest guest]

Debbie.... I`d be glad to meet you up there. Keep me reminded and we can

work out the details. It would be nice to put a face with one of you

here.

Remember getting jabbed wrong is not common. I had a couple three

biopsies at the clinic and they were each a piece of cake. Ive also had

a bone marrow biopsy and that wasn`t too bad either.

Don`t be afraid of transplant .the clinic is number 1 in that department

too.

Take care of yourself

Jerry

Good to hear all the positives about Cleveland!

I saw my hematologist today to go over the most recent labs. He wants

to find something cancer related (low platelets ) & wanted to do bone

marrow biopsy but I think it is more AIH related & am going to wait &

see what Dr. Carey says. I am scared to have a liver biopsy again

because of my last experience (pierced the pleur & I couldn't

breathe!)I am also afraid that there won't be options for me since I

have both Hep C and AIH. That is why I have been " observed " but

taking no medicines. Thanks for your support! I will be in Cleveland

April 4th in the evening awaiting an 8:15 a.m. appointment.If anyone

wants to get together, I'd love the company. My husband is coming but

he has a hard time dealing with illness. I am trying to " meet " via

the emails the members-I wish there was a little bio page so I could

get names & dx straight! Debbie

> > Debbie

> >

> > Where are you located? Are you anywhere near Cleveland? I have

> had great

> > experiences with them as has Cheryl and Randy. Please feel free

to

> ask away.

> >

> >

>

> Whoops! I thought I replied to you, , but I don't see my

> message posted. I am 3 hours south of Cleveland. Did anyone see Dr.

> Carey? Were the experiences with treatment of AIH or

transplantation?

> Thanks, Debbie

>

>

>

>

[Guest guest]

That would be great! Maybe we could have a get-together for anyone in

the area ( & Cheryl & Randy?)-April 4th should be a sunny

Spring Day & we Ohioans would be grateful for that! I hope to stay at

the Hotel-maybe we could meet there for dinner or later if that works

out better for people.I'll try not to focus on my fears & instead

READ everything I can to be prepared.I'll post reminders for the

meeting. Thanks! Debbie

-- In @y..., gefox@w... wrote:

> Debbie.... I`d be glad to meet you up there. Keep me reminded and

we can

> work out the details. It would be nice to put a face with one of you

> here.

> Remember getting jabbed wrong is not common. I had a couple three

> biopsies at the clinic and they were each a piece of cake. Ive also

had

> a bone marrow biopsy and that wasn`t too bad either.

> Don`t be afraid of transplant .the clinic is number 1 in that

department

> too.

> Take care of yourself

> Jerry

>

>

> Good to hear all the positives about Cleveland!

>

> I saw my hematologist today to go over the most recent labs. He

wants

> to find something cancer related (low platelets ) & wanted to do

bone

> marrow biopsy but I think it is more AIH related & am going to wait

&

> see what Dr. Carey says. I am scared to have a liver biopsy again

> because of my last experience (pierced the pleur & I couldn't

> breathe!)I am also afraid that there won't be options for me since

I

> have both Hep C and AIH. That is why I have been " observed " but

> taking no medicines. Thanks for your support! I will be in

Cleveland

> April 4th in the evening awaiting an 8:15 a.m. appointment.If

anyone

> wants to get together, I'd love the company. My husband is coming

but

> he has a hard time dealing with illness. I am trying to " meet " via

> the emails the members-I wish there was a little bio page so I

could

> get names & dx straight! Debbie

>

>

>

> > > Debbie

> > >

> > > Where are you located? Are you anywhere near Cleveland? I

have

> > had great

> > > experiences with them as has Cheryl and Randy. Please feel

free

> to

> > ask away.

> > >

> > >

> >

> > Whoops! I thought I replied to you, , but I don't see my

> > message posted. I am 3 hours south of Cleveland. Did anyone see

Dr.

> > Carey? Were the experiences with treatment of AIH or

> transplantation?

> > Thanks, Debbie

> >

> >

> >

> >

[Guest guest]

Thanks! If I don't find it by exploring the website, maybe I'll read

the info they gave me when I joined-you know, when all else fails,

read the directions! Debbie

> Debby -- re bio page -- I think there is one, but I saw it only

once and

> couldn't find it again.

> Harper

[Guest guest]

Debbie looking forward to it.

[Guest guest]

Yeah Harper where is that page? I~d like to see it too.

Jerry

[Guest guest]

I know I had the same experience...I registered then lost track of the

procedures....it`s just the group has gotten so big its hard to keep

tack of who is who.

I don`t always respond to people I wished had until the thread is lost

and then I`m confused (more than usual ).

Jerry

Jerry, re bio page -- I saw it when I was registering, perhaps the following day, too. I've never become very familiar with the system, and I couldn't find it again. Also, I didn't look very hard. Most people had minimal information listed -- perhaps only name and e-mail. Others gave extremely detailed information -- I think one person entered his street address. I know there was a provision for editing one's bio. I registered back in September, I think, and it's possible access has changed.

[Guest guest]

Harper I read every post without regard to the subject line but I

think that`s what messes me up `cause the content doesn`t always match.

Also I might reply to one message by hitting the reply button on another

post. I read all mine on email and When I get confused i try to go back

to the archives to see what I`m talking about.Reading these things out

of order doesn`t help either'

Jerry

[Guest guest]

My daughter has low platelets also - 88 was her last test result after

ttaking 6mp and Pred for one month. Have only met the GI twice, I mentioned

this the first time and he did not seem concerned. How low are yours

Debbie? Sounds like you will be in great company for your scheduled

procedures, it is great that everyone here is so supportive!

[ ] Re: Cleveland Clinic

> Good to hear all the positives about Cleveland!

>

> I saw my hematologist today to go over the most recent labs. He wants

> to find something cancer related (low platelets ) & wanted to do bone

> marrow biopsy but I think it is more AIH related & am going to wait &

> see what Dr. Carey says. I am scared to have a liver biopsy again

> because of my last experience (pierced the pleur & I couldn't

> breathe!)I am also afraid that there won't be options for me since I

> have both Hep C and AIH. That is why I have been " observed " but

> taking no medicines. Thanks for your support! I will be in Cleveland

> April 4th in the evening awaiting an 8:15 a.m. appointment.If anyone

> wants to get together, I'd love the company. My husband is coming but

> he has a hard time dealing with illness. I am trying to " meet " via

> the emails the members-I wish there was a little bio page so I could

> get names & dx straight! Debbie

>

>

>

> > > Debbie

> > >

> > > Where are you located? Are you anywhere near Cleveland? I have

> > had great

> > > experiences with them as has Cheryl and Randy. Please feel free

> to

> > ask away.

> > >

> > >

> >

> > Whoops! I thought I replied to you, , but I don't see my

> > message posted. I am 3 hours south of Cleveland. Did anyone see Dr.

> > Carey? Were the experiences with treatment of AIH or

> transplantation?

> > Thanks, Debbie

> >

> >

> >

> >

[Guest guest]

Debbie,

What is " Pleur " ? After my last biopsy I had the hardest time

breathing. As you said it took me days before I could take in a deep

breath.

Joan Claffey

NJ

cloud1151@... wrote:

>

> I have an appointment 4/4/01 with Dr. Carey. Haven't been there in

> over 10 years. Really scared-all of a sudden I worry that I am at end

> stage. I now am paranoid that the extra weight I have put on is

> ascites(any way to recognize the difference?), that I am about to

> bleed internally(what are symptoms or warning signs for variceal

> bleeding?)

> The scariest thing is that I can't take imuran or prednisone for AIH

> because that would exacerbate the Hep C which calls for interferon or

> similar treatment! It seems that I am doomed-unable to treat either.

> I am fairly new to this group. Am so glad I found you. I can't talk

> about this with anyone I know. Please excuse my fears & paranoia. I

> thought everything was under control; lab tests were slightly

> elevated at times but I still worked 7 days a week, many hours, on 6-

> 7 hours sleep. Don't really do anything relaxing or exercise or eat

> right-I get all my satisfaction from work. I am also afraid to have a

> biopsy again becaue the last time they hit my " pleur " and I could

> hardly draw breaths for several days. Thanks for listening. Debbie

>

>

>