Re: More Transplant Anxiety

[Guest guest]

,

I sympathize with you on hating to get the biopsy done. Any articles on the

procedure really underplay the " unpleasantness " of the liver biopsy. I

wasn't expecting much more than to feel a prick, and lay around the hospital

for the day. I was scared when I had the intense pain in my shoulder,

nausea, and loss of muscle control. I thought something was wrong! I'll

definitely be thinking of you, and I hope it goes as easy as possible.

You're very courageous to be doing all of these things to help yourself. My

friend's father has a life threatening illness, which he denies. This is

not doing himself or his family any good. Best of luck,

>From: " " <teers@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] More Transplant Anxiety

>Date: Sun, 09 May 1999 01:00:58 MDT

>

>From: " " <teers@...>

>

>I really enjoy all this support.. I am so glad i joined this list. I am

>not taking prednisone anymore just immuran... I like it a lot better..

>I have to get another liver biopsy in a couple months. I really hate

>getting this done..

>

>

>

>>From: Roselle50@...

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] More Transplant Anxiety

>>Date: Sun, 9 May 1999 00:16:30 EDT

>>

>>From: Roselle50@...

>>

>>:

>>

>>Welcome to the group. Yes prednesone is bad but it is about all you can

>>take

>>to keep you going at this time.

>>

>>My daughter is 15 and she has been very supportive of me since I got

>>AIH

>>in October of 1997. Ofcourse some days it is very hard. The predisone

>>that

>>really be bad. But one more day and I will be only taking the new drug

>>Budneside that the Mayo Clinic gave me. I am on a study group and I

>>really

>>hope that this will be better for me.

>>

>>Again Welcome:

>>

>>Sue AIH

>>Wisconsin

>>

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

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>>

>>Answer: ONElist. Check out our homepage for details!

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>>

>>

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[Guest guest]

teri,

My doc is a clown. I asked him if he would let me watch and he said no.

Than I asked if everything would be okay and he said oops. I could have

slapped him when he said it was ajoke and that he was done.

It was okay but i just don't like the thought of getting one.

>From: teri <teri@...>

>Reply- onelist

> " onelist " < onelist>

>Subject: Re: [ ] More Transplant Anxiety

>Date: Sun, 9 May 1999 16:44:52 -0500

>

>From: teri <teri@...>

>

>, my experience with biopsy was easy compared to 's. it was just

>the unpleasantness of staying in position on my side for a couple of hours.

>I didn't even know when he " stuck me " , having asked him to tell me just

>before he did it. He laughed and told me he already had! I think my dr. is

>excellent!

>teri

>

>----------

>From: emily simpson

>Sent: Sunday, May 09, 1999 4:07 PM

> onelist

>Subject: Re: [ ] More Transplant Anxiety

>

>From: " emily simpson " <esimpson7@...>

>

>,

>

>I sympathize with you on hating to get the biopsy done. Any articles on

>the

>procedure really underplay the " unpleasantness " of the liver biopsy. I

>wasn't expecting much more than to feel a prick, and lay around the

>hospital

>for the day. I was scared when I had the intense pain in my shoulder,

>nausea, and loss of muscle control. I thought something was wrong! I'll

>definitely be thinking of you, and I hope it goes as easy as possible.

>You're very courageous to be doing all of these things to help yourself.

>My

>friend's father has a life threatening illness, which he denies. This is

>not doing himself or his family any good. Best of luck,

>

>

>

> >From: " " <teers@...>

> >Reply- onelist

> > onelist

> >Subject: Re: [ ] More Transplant Anxiety

> >Date: Sun, 09 May 1999 01:00:58 MDT

> >

> >From: " " <teers@...>

> >

> >I really enjoy all this support.. I am so glad i joined this list. I am

> >not taking prednisone anymore just immuran... I like it a lot better..

> >I have to get another liver biopsy in a couple months. I really hate

> >getting this done..

> >

> >

> >

> >>From: Roselle50@...

> >>Reply- onelist

> >> onelist

> >>Subject: Re: [ ] More Transplant Anxiety

> >>Date: Sun, 9 May 1999 00:16:30 EDT

> >>

> >>From: Roselle50@...

> >>

> >>:

> >>

> >>Welcome to the group. Yes prednesone is bad but it is about all you can

> >>take

> >>to keep you going at this time.

> >>

> >>My daughter is 15 and she has been very supportive of me since I

>got

> >>AIH

> >>in October of 1997. Ofcourse some days it is very hard. The predisone

> >>that

> >>really be bad. But one more day and I will be only taking the new drug

> >>Budneside that the Mayo Clinic gave me. I am on a study group and I

> >>really

> >>hope that this will be better for me.

> >>

> >>Again Welcome:

> >>

> >>Sue AIH

> >>Wisconsin

> >>

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

> >>Who offers the richest group communications tools on the Internet?

> >>

> >>Answer: ONElist. Check out our homepage for details!

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

> >>Please support the American Liver Foundation!

> >>

> >>

> >>

> >>1.) To subscribe send e-mail to -subscribeonelist

> >>

> >>2.) To UNsubscribe send to -unsubscribeonelist

> >>

> >>3.) Digest e-mail format send to -digestonelist

> >>

> >>4.) Normal e-mail format send to -normalonelist

> >

> >

> >_______________________________________________________________

> >Get Free Email and Do More On The Web. Visit http://www.msn.com

> >

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

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> >

> >Join today!

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

> >Please support the American Liver Foundation!

> >

> >

> >

> >1.) To subscribe send e-mail to -subscribeonelist

> >

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> >

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> >

> >4.) Normal e-mail format send to -normalonelist

> >

>

>

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[Guest guest]

, my experience with biopsy was easy compared to 's. it was just the

unpleasantness of staying in position on my side for a couple of hours. I didn't

even know when he " stuck me " , having asked him to tell me just before he did it.

He laughed and told me he already had! I think my dr. is excellent!

teri

----------

From: emily simpson

Sent: Sunday, May 09, 1999 4:07 PM

onelist

Subject: Re: [ ] More Transplant Anxiety

From: " emily simpson " <esimpson7@...>

,

I sympathize with you on hating to get the biopsy done. Any articles on the

procedure really underplay the " unpleasantness " of the liver biopsy. I

wasn't expecting much more than to feel a prick, and lay around the hospital

for the day. I was scared when I had the intense pain in my shoulder,

nausea, and loss of muscle control. I thought something was wrong! I'll

definitely be thinking of you, and I hope it goes as easy as possible.

You're very courageous to be doing all of these things to help yourself. My

friend's father has a life threatening illness, which he denies. This is

not doing himself or his family any good. Best of luck,

>From: " " <teers@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] More Transplant Anxiety

>Date: Sun, 09 May 1999 01:00:58 MDT

>

>From: " " <teers@...>

>

>I really enjoy all this support.. I am so glad i joined this list. I am

>not taking prednisone anymore just immuran... I like it a lot better..

>I have to get another liver biopsy in a couple months. I really hate

>getting this done..

>

>

>

>>From: Roselle50@...

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] More Transplant Anxiety

>>Date: Sun, 9 May 1999 00:16:30 EDT

>>

>>From: Roselle50@...

>>

>>:

>>

>>Welcome to the group. Yes prednesone is bad but it is about all you can

>>take

>>to keep you going at this time.

>>

>>My daughter is 15 and she has been very supportive of me since I got

>>AIH

>>in October of 1997. Ofcourse some days it is very hard. The predisone

>>that

>>really be bad. But one more day and I will be only taking the new drug

>>Budneside that the Mayo Clinic gave me. I am on a study group and I

>>really

>>hope that this will be better for me.

>>

>>Again Welcome:

>>

>>Sue AIH

>>Wisconsin

>>

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

>>Who offers the richest group communications tools on the Internet?

>>

>>Answer: ONElist. Check out our homepage for details!

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

>>Please support the American Liver Foundation!

>>

>>

>>

>>1.) To subscribe send e-mail to -subscribeonelist

>>

>>2.) To UNsubscribe send to -unsubscribeonelist

>>

>>3.) Digest e-mail format send to -digestonelist

>>

>>4.) Normal e-mail format send to -normalonelist

>

>

>_______________________________________________________________

>Get Free Email and Do More On The Web. Visit http://www.msn.com

>

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

>ONElist: the best source for group communications.

>

>Join today!

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

>Please support the American Liver Foundation!

>

>

>

>1.) To subscribe send e-mail to -subscribeonelist

>

>2.) To UNsubscribe send to -unsubscribeonelist

>

>3.) Digest e-mail format send to -digestonelist

>

>4.) Normal e-mail format send to -normalonelist

>

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

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Reunite through a ONElist community.

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

Please support the American Liver Foundation!

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4.) Normal e-mail format send to -normalonelist

[Guest guest]

Biopsy was not a problem Don,t be worried.

Pa.

[Guest guest]

Geri, Thanks for your experience. Wife is still doing the same, but we are

frustrated becase there is no advance planning from these doctors.

Re: [ ] More Transplant Anxiety

> From: Geri Spang <spangs@...>

>

> ,

> << Wow, what a fast response. At 7:40 am eastern time. If you live in Las

> >Vegas, it must be about 4:40 am there. >>

> Caught in the act - I'm guilty of being an incurable insomniac. I rarely

> get to bed before 5:00 AM. Been this way for a couple of years.

>

> We live in LV but most of our medical care is through Scripps Clinic or

> Research Center in La Jolla, near San Diego. Las Vegas has grown but it's

> taking awhile for the medical community to catch up with the population

> growth. Those who live here and can, frequently go to California for

> medical care. One problem is a shortage of specialists and

> state-of-the-art diagnostic equipment. Some medical centers and

> specialists have out-reach programs, where specialists travel monthly to

> different Nevada locations to see patients with serious medical problems

> that can't be addressed locally.

>

> I've run into the same problem you describe, where a specialist basically

> says the local doctor is doing everything right. I think that you have to

> tell them definitively that you want to change from your local doctor to

> the specialist. The Hepatologist from San Francisco who I originally saw

> commented to me that UCSF was dealing with an " epidemic " of serious liver

> disease (hepatitis) and that except for the most seriously ill, there was

a

> waiting period of several months. He told me that in December, 1997, and

> the crisis is even bigger now, with greater awareness of Hep C. One way

> that you can change your wife's primary care is to ask for a written

> referral from your local doctor, though that might be awkward to do.

> Scripps accepted me without that but I sent them all of my lab reports and

> records when I first contacted them and my condition was very serious at

> the time. Cedars-Sinai in Los Angeles wouldn't even talk to me without a

> written referral from my LV doctor.

>

> How is your wife doing? Nothing has changed in a negative way, I hope?

>

> Take care,

> Geri

>

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

> Wanting to get back in touch with old friends?

>

> Reunite through a ONElist community.

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

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>

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> 2.) To UNsubscribe send to -unsubscribeonelist

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[Guest guest]

Geri, You can get occult blood in the stool from hemmorhoids, which is a

false positive and why I once had to get a full scoping. Get the routine

partial scoping. The lower part is where most of the cancers are found and

is why they only routinely do only the descending colon and with no need for

any seditive, etc. If there are any polyps, they just snip them off with an

attachment tool while they are there. There is no feeling in the

intestine, so you cant feel it being snipped. Polyps are rarely cancerous,

but they can become so. So they remove them.

Re: [ ] More Transplant Anxiety

> From: Geri Spang <spangs@...>

>

> Tami,

> What's FANA? Rheumatoid Arthritis is another autoimmune disease and

> there's always the risk of developing multiple autoimmune diseases if

> you're susceptible. Osteoporosis (low bone density) can be a possible

> result from long-term Prednisone use. It sounds like they're watching you

> closely. When you're my age, you take it for granted that your bones and

> joints will creak and groan. But, you're young and it's not time for you

> to have to deal with that yet, so it's good to be vigilant about any

> possible negative changes.

>

> I also had an ultrasound recently because of the pain on my left side.

> Negative. That's why my doctor wants to do a colonoscopy, but I don't

> " feel " like I have colon cancer and anyhow, I asked him to do a test for

> occult blood instead. Also negative. Could it be that the pressure you

> feel is due to the fluid retention and the weight you aren't accustomed

> to? Occasionally I also have something that almost feels like an internal

> muscle spasm, like bearing down when having a baby. It doesn't happen

> often and passes quickly, but it's a strange and startling sensation.

> Doesn't really hurt. I used to think that me and my body had become well

> acquainted but now I find that we don't know each other at all!

>

> Take care,

> Geri

>

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

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>

> Join today!

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>

[Guest guest]

,

I know exactly what you mean. This list has made it more and more obvious

to me that there's a terrible lack of communication from the medical

community about these diseases. I've been told that stress and anxiety

can aggravate the illness but they tell you that then do nothing to help

you avoid stress and anxiety. Each of us could write a book on our own

negative experiences.

Take care,

Geri

[Guest guest]

,

I've had a sigmoidoscopy (lower colon) and I sure don't want to have one of

them again! There were no problems. The occult test was also negative so I

seem to be in the clear. I think that the pain I get is from fluid

retention and pressure on my spleen or chest wall and nothing more sinister

than that. I've concluded that partly because it comes and goes and the

more problem I've having with fluid retention, the worse it gets. My

husband and I were laughing last night about how we seem to be walking a

tightrope right now and we wonder what difference anything makes since

another, new disaster seems to always be waiting around the corner. Might

as well try to get what happiness we can get from life while we can.

Take care,

Geri