Re: Today

October 7, 2009

I think Ed got lucky. We actually live near Zanesville,Oh...but his

gastroenterologist here sent Ed to the Cleveland Clinic and to Dr. there.

We absolutely love him. He treats Ed's varices aggressively....we do try to

remember that it's a teaching hospital so occasionally there are others in the

procedure room. Anytime we havce a concern or question for Dr. and we call

his office...he returns our call that day....he has called us at night with test

results. He's very straight forward with us and because he is also on the

transplant team, we trust him completely. We'd even thought about transferring

Ed's care to OSU hospital in Columbus( which woud be closer for us)....but he's

been at The Cleve Clinic for over 3 years now....so even tho it's a

drive...we're staying.

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: livercirrhosissupport

Sent: Tuesday, October 6, 2009 11:10:06 PM

Subject: Re: Today

Well funny you asked that little question,We will refer to me as PEA

brain.....My doctor refered me to a gastro at University (Case Western) and

silly me started the transplant evaluation there THINKING well of couse they are

only going to be doing the tests but I will end up at the all famous Cleveland

Clinic,ended up with an ass of a hepatologist and got a new one and then I had

to go to drug treatment for 6 months and then they started the evaluation,and it

will be at Case western.I have considered transfering but dont know what that

all involves right now I feel as though I have been jumping through hoops to

please everyone and I see the finish line:)and don't want to ruffle any feathers

until i am for sure on the list...But if you feel like letting me know if I made

a terrible mistake and know something I don't please let me know:)

From: Rhonda <rhondasemail@ cox.net>

Subject: Today

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Tuesday, October 6, 2009, 7:40 PM

Hi Group,

I had a bad experience today. My gastro doctor who has been my doctor

for the past 2 years since I was hospitalized with bleeding varices

quit the practice so I had to find a new one. I met the new doctor

today for the first time. He proceeded to tell me that I already have

2 strikes against me concerning receiving a transplant. 1) I have a

history of alcohol abuse (I haven't drank in 3 years) and 2) I am on

pain medication. He said 3 strikes and your out! I said, do I just

live with the pain. He basically said yes millions of people have

arthritus and are in pain. Then he wants me to supply him with proof

of my attendance to AA meetings and get a letter every month from my

sponsor. I already did all this for Baylor and had to fill out a

sheet each time I went for 6 months.. I completed this months ago for

Baylor and now I have to do it for him? I left this meeting totally

boggled. I came home and cried like a baby. Not sure exactly why

this bothered me so much. I just wanted to get some feed back on this

episode.

Thanks!

Roni

------------ --------- --------- ------

Group Email: livercirrhosissuppo rtyahoogroups (DOT) com

web address:

http://groups. yahoo.com/ group/livercirrh osissupport/

October 7, 2009

I think so to Lyncia.

Roni

> Roni,

>

> I think you and I are the only ones in this area.

>

> Thanks be to God for he creates our tomorrows Love, Lyncia

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tue, October 6, 2009 9:19:57 PM

> Subject: Re: Today

>

> Jill I went to see a gastroenterologist. What kind of pain meds is Ed

> on? Where are you located? My other gastro didn't have a problem

> with my pain medication.

>

> Roni

>

> > I agree with you, Dave...Ed's hepatologist has never said

> > anything about the pain meds. He has a list of all the meds Ed

> > takes and last week when we were there said he would start the

> > process when Ed's MELD reaches 14 or 15.....he said they do it then

> > so that he's not caught off guard when his MELD is 17 or 18 when

> > they transplant. Ed doctor is a hepatic specialist ( who is the

> > assistant head of the gastroenterology and hepatic disease dept and

> > also on the transplant team), not just a gastroenterlogist. What

> > kind of doc are you seeing?

> > Now my orthopedic surgeon says that before he does my total

> > knee replacements, I will have to go off of ALL my pain meds for 2

> > or 3 weeks before surgery. If I don't, the meds I will get

> > afterwards will not work very well....but then I take percocet and

> > morphine everyday. That will be a tough 2-3 weeks! I can't believe

> > your doc told you that, Roni.

> >

> > Love,Jill

> >

> > We don't remember days, we remember moments.

> > Life is not measured by the breaths we take,but by the moments that

> > take our breath away.

> >

> > ____________ _________ _________ __

> > From: dave dodds <daveliltoeyahoo (DOT) com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Tuesday, October 6, 2009 8:46:46 PM

> > Subject: Re: Today

> >

> > I haven't gone through the process of meeting with a transplant team

> > yet..It is kind of freaky how much power these doc's have.

> > Literally life or death. That's bull**** about the pain med's. My

> > liver doc said he would prescribe something for my arthritis, but

> > would not because of my history. My primary doc. did, though. Last

> > time I saw my liver doc. I didn't tell him, but this time the liver

> > doc. knows, because I gave his nurse a full list of my med's. And I

> > see him coming up on Nov. 6th...will be interesting to hear what he

> > says about it. The chips will fall where they fall I suppose.

> > Guess if he says I will be denied, because of the pain med's, I will

> > quit them and live with the pain. It just kind of reinforces what I

> > have known for years. A lot of doctors see us with addiction

> > problems as second class citizens. Not all, but some, along with

> > society at large. Not all, but some. Stay strong, try to relax,

> > this shall pass. I

> > totally understand. It is true most doc's do not trust us. And I

> > have to say rightfully so. Addictive types have to prove

> > theirselves over and over, and this will not change. What's the

> > saying.. " accept the things we cannot change " . peace and comfort,

> > Dave

> >

> > ____________ _________ _________ __

> > From: Rhonda <rhondasemail@ cox.net>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Tue, October 6, 2009 6:40:56 PM

> > Subject: Today

> >

> > Hi Group,

> >

> > I had a bad experience today. My gastro doctor who has been my

> doctor

> > for the past 2 years since I was hospitalized with bleeding varices

> > quit the practice so I had to find a new one. I met the new doctor

> > today for the first time. He proceeded to tell me that I already

> have

> > 2 strikes against me concerning receiving a transplant. 1) I have a

> > history of alcohol abuse (I haven't drank in 3 years) and 2) I am on

> > pain medication. He said 3 strikes and your out! I said, do I just

> > live with the pain. He basically said yes millions of people have

> > arthritus and are in pain.. Then he wants me to supply him with

> proof

> > of my attendance to AA meetings and get a letter every month from my

> > sponsor. I already did all this for Baylor and had to fill out a

> > sheet each time I went for 6 months. I completed this months ago for

> > Baylor and now I have to do it for him? I left this meeting totally

> > boggled. I came home and cried like a baby. Not sure exactly why

> > this bothered me so much. I just wanted to get some feed back on

> this

> > episode.

> >

> > Thanks!

> > Roni

> >

October 7, 2009

Lyncia I remember you telling me that. It took me around 4 months

too. They are very organized once they find out about you. I am

really impressed with the team at Baylor. They are a very caring and

wonderful bunch. I didn't feel looked down on once. I wish I lived

closer to actually see doctors there. I'm in Tulsa. You live right

around the Dallas area don't you?

Roni

> Roni,

>

> I know that you are going to Baylor......I am going to the

> transplant center at Central Methodist. It only took me 4 months to

> be listed.

>

> Thanks be to God for he creates our tomorrows Love, Lyncia

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tue, October 6, 2009 9:24:54 PM

> Subject: Re: Today

>

> LOL.....you guys are too funny!

>

> > Yeo ! He's the chief in our little town. LOL !! Okay , we'll use

> > him for back up when we get Roni's doc!

> >

> > Love,Jill

> >

> > We don't remember days, we remember moments.

> > Life is not measured by the breaths we take,but by the moments that

> > take our breath away.

> >

> > ____________ _________ _________ __

> > From: drgonflyblue <pita54meyahoo (DOT) com>

> > To: livercirrhosissuppo rtyahoogroups (DOT) com

> > Sent: Tuesday, October 6, 2009 9:22:12 PM

> > Subject: Re: Today

> >

> > Jeepers Jill! Is Ed a cop?...LOL. I just went to my first appt. last

> > mo. and they had me do a urine drop which is fine. I figured it was

> > to only make sure that there was nothing else in my system and I

> > never stopped to think of those who might get the drugs to sell and

> > not actually even take. Like you said, that's understandable and I

> > can handle that. And yeah, we should get the name and address of

> > Roni's doc and we'll all write to him!!!! Just call Ed in for

> > backup~~~Best wishes, Debbie

> >

> > > >

> > > > I haven't gone through the process of meeting with a transplant

> > team yet..It is kind of freaky how much power these doc's have.