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Thanks, Abijann.

The anti rejection drug Myfortic is more expensive than Prograf

according to my receipts. I only take Prograf now.

I'm looking forward to getting the shot to stimulate my bone marrow

to produce more red blood cells because my red blood cells have

dropped, and I am very tired now. It's better to be tired than to

have the other side effects I could have from this Hep C treatment.

My coordinator told me Christmas will be here again sooner than I

think, and I will be all done with the treatment. Yay! I will be

jumping for joy then!

Penny

>

> People would be really surprised to know all the drugs that have

> sodium in them. Myfortic is an anti rejection drug. My husband is

> on this now. Sodium is not bad...we have to have a certain amount

in

> our bodies, as I'm sure you already know.

>

> The point I was trying to make to patients is that the doctor

> " usually " places a patient on a lower sodium diet...not a no

> sodium diet. They need to be careful to listen to what the

> doctor does say. It is very needful that they ask the doctor how

> much sodium they should have a day. The doctor knows what

> drugs they are taking and then can tell them how much they

> are allowed. They should also ask how much fluid they are

> allowed to have. I never heard a doctor say no fluid at all...

> the patient could become dehydrated in that case.

>

> What about Sodium Fluoride in toothpaste. Sodium Bicarbonate

> which is baking soda. People still have to brush their teeth.

> GRIN ;-) Okay..I know they don't swallow their toothpaste..was

just

> kidding.

>

>

> You are doing great with your shots....keep going girl...

> can't wait till you reach the final one. I bet you will be

> estatic...I would. I'd be jumping around the room for joy.

>

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I will be taking Aranesp (Darbepoetin Alpha), which is pretty much

the same thing as Procrit, I think. I don't know yet how much I will

take. Thanks for that info. The no shaking thing I am familiar with

since my Interferon shots can't be shaken either.

I had to take iron supplements after my transplant for quite a while

since my hematocrit had a hard time staying where it should, but they

took me off of them a few months ago.

I already have little red marks and bruises on my legs where I have

given myself the shots. I never thought I could give myself shots,

but it is a piece of cake now.

Penny

>

> I can't get Yahoo to take that link no matter what I do.

> UUGGH!

> You poor girl, you are just going to be full of pinholes.

> My husband took Epogen (Procrit) for quite sometime after

> his transplant. It is a wonderful drug. It did bring

> his red blood cells count up. With that medications, it is

> not to be shook for any reason. You may notice that it

> comes with a little thermometer with it. That will turn

> red if the medication starts to freeze. It needs to be

> kept cold but if it becomes frozen it is no good. Also

> watch the expiration dates on it. Some that we got had

> a really short time before they expired. Since you are able to

> give yourself those other shots...this should be a piece

> of cake to you. He was on 30,000 a week to begin with.

> They finally reduced it to 10,000 once a month. He is off

> of it now. He also had to take iron supplements with that.

>

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wow i have got that message before that java script is not allowed or

something like that,question once you put on a new browser do you

delete ei??or does it just sit unused? no worries about them getting

my money hahaha i have never used this thing for finances,its always

smarter than me so there for i cant trust it hahahaha,so that what is

going on when i click on something and it clicks two or three more

times than i did then does something stupid wellll imagine that,thats

sneaky how can they get away with that?anyways will be checking into

these things, thanks bobby as always :)

> >

> > helloooooo pen-el-o-peeeeeeeee ee hahahaha ,hey girl i have been

> trying

> > to check out your myspace page, but everytime i do i cant read it

> your

> > background is white and your type font too, so its all just white

> > except your vidios ect. girl you need to pimp your page with a

> colored

> > back ground lol, just go to pyzam .com or yourspaceormine. com

and

> pic.

> > a cool background teehee. i will check back in later and check

your

> > page out ,much love barby

> >

>

>

>

>

>

>

>

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aaaahahahahahahahaha penny sorry my love seems i remember you telling

me that before,must be my mad cow acting up hahahha,i just like how

the eeeeeeeeee part rolls off my tongue :) but you are my penny so i

will try to reframe from the other lol,unless my mad cow takes over

again hhahahahaha,thanks for not letting my silly self tick ya off i

love you my friend :),barby

> >

> > helloooooo pen-el-o-peeeeeeeeeee hahahaha ,hey girl i have been

> trying

> > to check out your myspace page, but everytime i do i cant read it

> your

> > background is white and your type font too, so its all just white

> > except your vidios ect. girl you need to pimp your page with a

> colored

> > back ground lol, just go to pyzam .com or yourspaceormine.com and

> pic.

> > a cool background teehee. i will check back in later and check

your

> > page out ,much love barby

> >

>

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That's ok. Mad cow? That's funny.

Penny

> > >

> > > helloooooo pen-el-o-peeeeeeeeeee hahahaha ,hey girl i have been

> > trying

> > > to check out your myspace page, but everytime i do i cant read

it

> > your

> > > background is white and your type font too, so its all just

white

> > > except your vidios ect. girl you need to pimp your page with a

> > colored

> > > back ground lol, just go to pyzam .com or yourspaceormine.com

and

> > pic.

> > > a cool background teehee. i will check back in later and check

> your

> > > page out ,much love barby

> > >

> >

>

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Hi ,

Hmmmm...my transplant team told me before and after my transplant

that the treatment for Hepatitis C would be necessary after

transplant, even if treatment was done before. A transplant is NOT a

cure for Hepatitis C. How fast it returns after transplant varies

from person to person, but it DOES come back. You should probably

talk to the hepatologist about this. He would know better than the

surgeon.

You know I am doing the treatment, and it is causing my red blood

cells to drop and I need a shot to stimulate the bone marrow to

produce more red blood cells, but the insurance company is dragging

their feet about approving it for me. I will need it sent to me so I

can give myself the shots because I will need it continuously for the

rest of my treatment. I don't know how often, but often enough so I

need to have the medicine here and give the shots to myself. My post

transplant coordinator is calling my local doctor today to see if I

can get the first shot at my local clinic, otherwise I will need to

get a blood transfusion. My hepatologist said I needed that shot

once my hemoglobin got below 11. It is now 9.8.

Penny

>

> what is happening? i am understanding that you are not feeling

well...i am trying to catchup on post i really haven't been active

over 2 weeks. i said something to the surgeon about treatment after

the transplant and he acted like that was not a good thing...actually

he gave me the impression that treatment is not likely. i am

perplexed now cause i had it in my head that treatment was a normal

process after transplant. love sandra

>

>

>

>

>

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I just got a call from my coordinator and she said my hepatologist

wants me to absolutely have this shot tomorrow because she said by

next week, my red blood cell counts will have dropped too

low...dangerously low. She faxed an order over to my local doctor's

office, and I have to call them to have them refer me over to my

local hospital's " treatment center " to get the shot. She hasn't

heard anything back from the insurance company yet. She said I will

need this shot at least once a week, maybe twice a week.

Penny

> >

> > what is happening? i am understanding that you are not feeling

> well...i am trying to catchup on post i really haven't been active

> over 2 weeks. i said something to the surgeon about treatment after

> the transplant and he acted like that was not a good

thing...actually

> he gave me the impression that treatment is not likely. i am

> perplexed now cause i had it in my head that treatment was a normal

> process after transplant. love sandra

> >

> >

> >

> >

> >

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I have an appointment to get the shot tomorrow at 1:00, but we still

don't know if the insurance will even cover that. At least I will

have the first shot I need so we will have more time to fight with

the stupid insurance company...grrrrrrr!!

Penny

> > >

> > > what is happening? i am understanding that you are not feeling

> > well...i am trying to catchup on post i really haven't been

active

> > over 2 weeks. i said something to the surgeon about treatment

after

> > the transplant and he acted like that was not a good

> thing...actually

> > he gave me the impression that treatment is not likely. i am

> > perplexed now cause i had it in my head that treatment was a

normal

> > process after transplant. love sandra

> > >

> > >

> > >

> > >

> > >

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Penny - would your doctors consider putting you in the hospital to get the

shot, not as an outpatient, but an inpatient. Insurance companies usually

pay for things while you are in the hospital that they wouldn't pay for

otherwise, at least mine does. Jan H

On Thu, Jan 29, 2009 at 1:33 PM, preciouspenny3 wrote:

> I have an appointment to get the shot tomorrow at 1:00, but we still

> don't know if the insurance will even cover that. At least I will

> have the first shot I need so we will have more time to fight with

> the stupid insurance company...grrrrrrr!!

>

>

> Penny

>

>

> > > >

> > > > what is happening? i am understanding that you are not feeling

> > > well...i am trying to catchup on post i really haven't been

> active

> > > over 2 weeks. i said something to the surgeon about treatment

> after

> > > the transplant and he acted like that was not a good

> > thing...actually

> > > he gave me the impression that treatment is not likely. i am

> > > perplexed now cause i had it in my head that treatment was a

> normal

> > > process after transplant. love sandra

> > > >

> > > >

> > > >

> > > >

> > > >

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I don't know. That's an idea, but it's set up this way now so we

will see what happens.

Penny

> > > > >

> > > > > what is happening? i am understanding that you are not

feeling

> > > > well...i am trying to catchup on post i really haven't been

> > active

> > > > over 2 weeks. i said something to the surgeon about treatment

> > after

> > > > the transplant and he acted like that was not a good

> > > thing...actually

> > > > he gave me the impression that treatment is not likely. i am

> > > > perplexed now cause i had it in my head that treatment was a

> > normal

> > > > process after transplant. love sandra

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

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penny i know your frusteration my love these ins. companies are a

mess thats for sure, i hope they get it fixed soon ,stress cant be

that good for you .i am praying for you love,barby

> > > >

> > > > what is happening? i am understanding that you are not

feeling

> > > well...i am trying to catchup on post i really haven't been

> active

> > > over 2 weeks. i said something to the surgeon about treatment

> after

> > > the transplant and he acted like that was not a good

> > thing...actually

> > > he gave me the impression that treatment is not likely. i am

> > > perplexed now cause i had it in my head that treatment was a

> normal

> > > process after transplant. love sandra

> > > >

> > > >

> > > >

> > > >

> > > >

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i agree about checking later with the hepatologisteverything i have heard was to

get treatment ...any ways we have. ...i am sorry you are not feeling well...what

is the shot you will be getting?.i hope it works. i met some new people who were

also going thru the evaluation process...one of them was on a med called Xifaxan

here is what i found on web about its use in liver disease

XIFAXAN FOR THE TREATMENT OF ENCEPHALOPATHY FOR THOSE WITH HEPATITIS AND LIVER

DISEASE

Xifaxan ( rifaximin) is a new antibiotic that can successfully treat hepatic

encephalopathy in many patients. Studies have shown that Xifaxan treatment is

associated with improvements in memory, neuromuscular function, and

consciousness in those patients suffering from encephalopathy. It is associated

with fewer side effects than current antibiotic regimens used to treat hepatic

encephalopathy. Patients have also found xifaxan easier to tolerate with less

side effects such as gas, excessively sweat taste and diarrhea that is often

associated with lactulose. Finally, Xifaxan is not associated with hearing loss

of kidney injury which may occur with neomycin.

All contents of this article are Copyright © Palmer, MD     

Palmer, MD is the author of " Dr. Palmer's Guide of Hepatitis

and Liver Disease " . (Published 2004. Penguin Putnam).

________________________________

To: livercirrhosissupport

Sent: Thursday, January 29, 2009 2:37:56 PM

Subject: Re: penny

Hi ,

Hmmmm...my transplant team told me before and after my transplant

that the treatment for Hepatitis C would be necessary after

transplant, even if treatment was done before. A transplant is NOT a

cure for Hepatitis C. How fast it returns after transplant varies

from person to person, but it DOES come back. You should probably

talk to the hepatologist about this. He would know better than the

surgeon.

You know I am doing the treatment, and it is causing my red blood

cells to drop and I need a shot to stimulate the bone marrow to

produce more red blood cells, but the insurance company is dragging

their feet about approving it for me. I will need it sent to me so I

can give myself the shots because I will need it continuously for the

rest of my treatment. I don't know how often, but often enough so I

need to have the medicine here and give the shots to myself. My post

transplant coordinator is calling my local doctor today to see if I

can get the first shot at my local clinic, otherwise I will need to

get a blood transfusion. My hepatologist said I needed that shot

once my hemoglobin got below 11. It is now 9.8.

Penny

>

> what is happening? i am understanding that you are not feeling

well...i am trying to catchup on post i really haven't been active

over 2 weeks. i said something to the surgeon about treatment after

the transplant and he acted like that was not a good thing...actually

he gave me the impression that treatment is not likely. i am

perplexed now cause i had it in my head that treatment was a normal

process after transplant. love sandra

>

>

>

>

>

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Hi ,

I will be taking Aranesp that stimulates the bone marrow to produce

more red blood cells that the treatment for Hep C suppresses. I

think my red blood cell count must be even lower today since I've

been more tired than ever, unless it's just because of all the

craziness about trying to get the shot.

I don't think one shot will instantly create a change. It takes a

bit of time, but once it starts working, I shouldn't be so tired

anymore. I will have to take the shots at least once a week, or

maybe twice a week for the rest of my treatment.

Penny

> >

> > what is happening? i am understanding that you are not feeling

> well...i am trying to catchup on post i really haven't been active

> over 2 weeks. i said something to the surgeon about treatment after

> the transplant and he acted like that was not a good

thing...actually

> he gave me the impression that treatment is not likely. i am

> perplexed now cause i had it in my head that treatment was a normal

> process after transplant. love sandra

> >

> >

> >

> >

> >

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Thanks, Barby.

Penny

> > > > >

> > > > > what is happening? i am understanding that you are not

> feeling

> > > > well...i am trying to catchup on post i really haven't been

> > active

> > > > over 2 weeks. i said something to the surgeon about treatment

> > after

> > > > the transplant and he acted like that was not a good

> > > thing...actually

> > > > he gave me the impression that treatment is not likely. i am

> > > > perplexed now cause i had it in my head that treatment was a

> > normal

> > > > process after transplant. love sandra

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

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the tiredness is as you said an accumulation of all you are going thru but the

blood is a major culprit.

________________________________

To: livercirrhosissupport

Sent: Thursday, January 29, 2009 9:55:46 PM

Subject: Re: penny

Hi ,

I will be taking Aranesp that stimulates the bone marrow to produce

more red blood cells that the treatment for Hep C suppresses. I

think my red blood cell count must be even lower today since I've

been more tired than ever, unless it's just because of all the

craziness about trying to get the shot..

I don't think one shot will instantly create a change. It takes a

bit of time, but once it starts working, I shouldn't be so tired

anymore. I will have to take the shots at least once a week, or

maybe twice a week for the rest of my treatment.

Penny

> >

> > what is happening? i am understanding that you are not feeling

> well...i am trying to catchup on post i really haven't been active

> over 2 weeks. i said something to the surgeon about treatment after

> the transplant and he acted like that was not a good

thing...actually

> he gave me the impression that treatment is not likely. i am

> perplexed now cause i had it in my head that treatment was a normal

> process after transplant. love sandra

> >

> >

> >

> >

> >

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Thank you, . I didn't know Dr Palmer was talking about rifaximin. I have

been on it going on two years now. It costs a lot more, but it is well worth it.

Love, Bobby

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Thursday, January 29, 2009 7:29:07 PM

Subject: Re: Re: penny

i agree about checking later with the hepatologistever ything i have heard was

to get treatment ...any ways we have. ...i am sorry you are not feeling

well...what is the shot you will be getting?.i hope it works. i met some new

people who were also going thru the evaluation process...one of them was on a

med called Xifaxan here is what i found on web about its use in liver disease

XIFAXAN FOR THE TREATMENT OF ENCEPHALOPATHY FOR THOSE WITH HEPATITIS AND LIVER

DISEASE

Xifaxan ( rifaximin) is a new antibiotic that can successfully treat hepatic

encephalopathy in many patients. Studies have shown that Xifaxan treatment is

associated with improvements in memory, neuromuscular function, and

consciousness in those patients suffering from encephalopathy. It is associated

with fewer side effects than current antibiotic regimens used to treat hepatic

encephalopathy. Patients have also found xifaxan easier to tolerate with less

side effects such as gas, excessively sweat taste and diarrhea that is often

associated with lactulose. Finally, Xifaxan is not associated with hearing loss

of kidney injury which may occur with neomycin.

All contents of this article are Copyright © Palmer, MD

Palmer, MD is the author of " Dr. Palmer's Guide of Hepatitis

and Liver Disease " . (Published 2004. Penguin Putnam).

____________ _________ _________ __

From: preciouspenny3 <preciouspenny3@ yahoo.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Thursday, January 29, 2009 2:37:56 PM

Subject: Re: penny

Hi ,

Hmmmm...my transplant team told me before and after my transplant

that the treatment for Hepatitis C would be necessary after

transplant, even if treatment was done before. A transplant is NOT a

cure for Hepatitis C. How fast it returns after transplant varies

from person to person, but it DOES come back. You should probably

talk to the hepatologist about this. He would know better than the

surgeon.

You know I am doing the treatment, and it is causing my red blood

cells to drop and I need a shot to stimulate the bone marrow to

produce more red blood cells, but the insurance company is dragging

their feet about approving it for me. I will need it sent to me so I

can give myself the shots because I will need it continuously for the

rest of my treatment. I don't know how often, but often enough so I

need to have the medicine here and give the shots to myself. My post

transplant coordinator is calling my local doctor today to see if I

can get the first shot at my local clinic, otherwise I will need to

get a blood transfusion. My hepatologist said I needed that shot

once my hemoglobin got below 11. It is now 9.8.

Penny

>

> what is happening? i am understanding that you are not feeling

well...i am trying to catchup on post i really haven't been active

over 2 weeks. i said something to the surgeon about treatment after

the transplant and he acted like that was not a good thing...actually

he gave me the impression that treatment is not likely. i am

perplexed now cause i had it in my head that treatment was a normal

process after transplant. love sandra

>

>

>

>

>

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  • 2 weeks later...

Hi ,

I'm feeling better...not as tired. My red blood cell counts are slowly

creeping back up. I had my third shot for that today. Abijann asked

me one day if they are making me take extra iron, and at the time, the

answer was no. As of yesterday, though, my coordinator called me and

told me I should start taking extra iron again like I did for a long

time after my transplant.

I'm glad your husband is feeling better.

Penny

>

> how are you feeling ...how is the new drug doing that you are taking

to increase red cells? love sandra

>

>

>

>

>

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Hi again,

I didn't think about it before because I thought it was just a fluke,

but I am noticing something within the last couple of weeks that I

never had problems with before. I get a burning pain in my stomach

that goes down to my bowels, and even when I have a bowel movement,

it doesn't go away. It actually gets worse sometimes, and then I

sleep, and it disappears by the time I wake up again. I don't know

if it's indigestion or what, but I think it has something to do with

my treatment because I never had these problems before. I have

noticed that it happens when I eat fried fish and American fries on

Friday nights, or when I eat pizza. It usually happens the morning

after I eat those things. I guess I'll have to stop eating those

things at least until I finish this treatment. My appetite isn't

quite as good as it was either, and I know the treatment is causing

that.

Penny

> >

> > how are you feeling ...how is the new drug doing that you are

taking

> to increase red cells? love sandra

> >

> >

> >

> >

> >

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Penny,

I'm happy to know you're feeling better, even if just a bit for now.  I know you

will continue to feel better as the blood counts rise.  Just go slow and take

care of yourself.  I'm praying for ya!  Love ya!

 

 

 

Warm Hugs...........

 

Diane

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Friday, February 13, 2009 9:25:35 PM

Subject: Re: penny

Hi ,

I'm feeling better...not as tired. My red blood cell counts are slowly

creeping back up. I had my third shot for that today. Abijann asked

me one day if they are making me take extra iron, and at the time, the

answer was no. As of yesterday, though, my coordinator called me and

told me I should start taking extra iron again like I did for a long

time after my transplant.

I'm glad your husband is feeling better.

Penny

>

> how are you feeling ...how is the new drug doing that you are taking

to increase red cells? love sandra

>

>

>

>

>

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Penny,

Please  just be sure too tell your tx coordinator about this.  Don't any chances

with ulcers or anything like that.  Love you!  Hope you feel better!

 

 

 

Warm Hugs...........

 

Diane

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Friday, February 13, 2009 11:09:42 PM

Subject: Re: penny

Hi again,

I didn't think about it before because I thought it was just a fluke,

but I am noticing something within the last couple of weeks that I

never had problems with before. I get a burning pain in my stomach

that goes down to my bowels, and even when I have a bowel movement,

it doesn't go away. It actually gets worse sometimes, and then I

sleep, and it disappears by the time I wake up again. I don't know

if it's indigestion or what, but I think it has something to do with

my treatment because I never had these problems before. I have

noticed that it happens when I eat fried fish and American fries on

Friday nights, or when I eat pizza. It usually happens the morning

after I eat those things. I guess I'll have to stop eating those

things at least until I finish this treatment. My appetite isn't

quite as good as it was either, and I know the treatment is causing

that.

Penny

> >

> > how are you feeling ...how is the new drug doing that you are

taking

> to increase red cells? love sandra

> >

> >

> >

> >

> >

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yes something is up ... please be sure to tell about this...have you ever had

any stomach issues GERDs gallbladder ect...other then the liver? and yes please

stay away from from fatty foods. keep in touch ...love sandra

________________________________

To: livercirrhosissupport

Sent: Saturday, February 14, 2009 12:09:42 AM

Subject: Re: penny

Hi again,

I didn't think about it before because I thought it was just a fluke,

but I am noticing something within the last couple of weeks that I

never had problems with before. I get a burning pain in my stomach

that goes down to my bowels, and even when I have a bowel movement,

it doesn't go away. It actually gets worse sometimes, and then I

sleep, and it disappears by the time I wake up again. I don't know

if it's indigestion or what, but I think it has something to do with

my treatment because I never had these problems before. I have

noticed that it happens when I eat fried fish and American fries on

Friday nights, or when I eat pizza. It usually happens the morning

after I eat those things. I guess I'll have to stop eating those

things at least until I finish this treatment. My appetite isn't

quite as good as it was either, and I know the treatment is causing

that.

Penny

> >

> > how are you feeling ...how is the new drug doing that you are

taking

> to increase red cells? love sandra

> >

> >

> >

> >

> >

Link to comment
Share on other sites

i agree with the girls penny ,talk to your dr. about this ,just to

rule out anything serious.better to be safe than sorry ,much love

barby

> > >

> > > how are you feeling ...how is the new drug doing that you are

> taking

> > to increase red cells? love sandra

> > >

> > >

> > >

> > >

> > >

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Thanks, Diane.

I have told my coordinator. It doesn't happen a lot, so we decided

to avoid certain foods to see if that helps, and I think it does.

She said if it continues, I should see my local doctor.

Penny

> > >

> > > how are you feeling ...how is the new drug doing that you are

> taking

> > to increase red cells? love sandra

> > >

> > >

> > >

> > >

> > >

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I have told my coordinator and she said to avoid those foods, and if

it continues, to see my primary doctor. I've never had any

gallbladder or GERD issues before, except what was caused by the

cirrhosis. The GERD symptoms disappeared after my transplant, and

only started a few months before the transplant. I don't have a

gallbladder anymore since they take that out when they do the liver

transplant. I did have colonitis in 2004, and that put me in the

hospital, but it doesn't feel like that. Since I go to the clinic

for lab tests every Monday anyway, I might see my primary doctor just

to be on the safe side.

Penny

> > >

> > > how are you feeling ...how is the new drug doing that you are

> taking

> > to increase red cells? love sandra

> > >

> > >

> > >

> > >

> > >

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