Hi I'm NEW

[Guest guest]

Sue,

has your doctor suggested getting you on the waiting list for TX?

You might want to push for it, you sound well along. Nodules are

clumps of fibrous tissue that replace normal liver tissue.Piecemeal necrosis

is another indicator for cirrhosis. Necrosis means " death of tissue " .

Steatosis is fatty deposits. Parenchyma refers to the natural " arrangement "

or shape/structure of the liver. Grade four stage four is about when you

should be considered for tx. I am including some links so you can understand

your test results.

http://www.hepatitis-central.com/hcv/labs/labtoc.html

http://www.carbonbased.com/Definitions.htm

Syd

>From: blue_eyes4you@...

>Reply-Hepatitis Cegroups

>Hepatitis Cegroups

>Subject: Re: Hi I'm New

>Date: Tue, 20 Jun 2000 19:51:57 -0400 (EDT)

>

>My name is Sue. Just had second biopsy done. Does anyone know what these

>results mean? Am I ready for transplant? Liver, core biopsy: Chronic

>hepatitis with cirrhosis (Grade 4, Stage 4) - hepatitic C virus related,

>features include minimal steatosis, severe to marked portal inflammation

>with lymphoid aggregates and moderate periportal piecemeal necrosis (4+)

>and moderate lobular inflammation and hepatocellular necrosis (3+), and

>with features of hepatitic cirrhosis (4+) - negative for maligancy.

>Extent of fibrosis confirmed by trichrome stain. COMMENT: Disease

>activity and stage is more advanced in comparison to the previous biopsy

>of 3/3/95. My first biopsy was just confirmed hepatitis and mild

>inflammation. Thanks for any information you may have.

>Sue

>

><< Text5.html >>

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[Guest guest]

My name is Sue. Just had second biopsy done. Does anyone know what these

results mean? Am I ready for transplant? Liver, core biopsy: Chronic

hepatitis with cirrhosis (Grade 4, Stage 4) - hepatitic C virus related,

features include minimal steatosis, severe to marked portal inflammation

with lymphoid aggregates and moderate periportal piecemeal necrosis (4+)

and moderate lobular inflammation and hepatocellular necrosis (3+), and

with features of hepatitic cirrhosis (4+) - negative for maligancy.

Extent of fibrosis confirmed by trichrome stain. COMMENT: Disease

activity and stage is more advanced in comparison to the previous biopsy

of 3/3/95. My first biopsy was just confirmed hepatitis and mild

inflammation. Thanks for any information you may have.

Sue

Sue

[Guest guest]

Thanks Syd,

All my doctor said is at least 20% of my liver is still functioning. I

haven't been put on transplant as he wants to try an experimental

medicine. I have done treatments for five years and nothing. The

cirohhis is non-alcoholic of which I never heard of but I've never drank

nor did drugs. At this point, I am scared and thought when you reach

this level, it is time for transplant as I'm only 39 with 3 kids. My

youngest also has it.

Sue

Sue

[Guest guest]

Sue,

Cirrhosis is a common complication of HCV. Anything that kills liver cells

will eventually result in cirrhosis which is another name for scarring.

Waht kind of treatments have you undergone?

And what experimental drug are you going to try?

Sorry to hear about your youngest. There are new treatment options in

development, with a little luck they will find the one that works soon.

Syd

>From: blue_eyes4you@...

>Reply-Hepatitis Cegroups

>Hepatitis Cegroups

>Subject: Re: Re: Hi I'm New

>Date: Wed, 21 Jun 2000 03:45:32 -0400 (EDT)

>

>Thanks Syd,

>All my doctor said is at least 20% of my liver is still functioning. I

>haven't been put on transplant as he wants to try an experimental

>medicine. I have done treatments for five years and nothing. The

>cirohhis is non-alcoholic of which I never heard of but I've never drank

>nor did drugs. At this point, I am scared and thought when you reach

>this level, it is time for transplant as I'm only 39 with 3 kids. My

>youngest also has it.

>Sue

>

><< Text5.html >>

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Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Sue,

Epiver? I haven't heard of that one yet. Keep us informed how that goes.

I am probably not the only one that would like to know how that works out

for you. Let me know if you have any other questions, I have developed

quite a database in the past year or so.

Syd

>From: blue_eyes4you@...

>Reply-Hepatitis Cegroups

>Hepatitis Cegroups

>Subject: Re: Re: Hi I'm New

>Date: Wed, 21 Jun 2000 18:33:32 -0400 (EDT)

>

>Hi Syd,

>Thanks so much for helping me out. I found out in 1995 I had hepc. Had a

>biopsy done and it was confirmed that I had chronic, active, hepatitis c

>with minimal damage. I took interfuron for one year when they had the

>large needles and you had to mix the stuff yourself. My viral load came

>down to about 20 million but of course, non-responder. I waited 6 months

>and went to Philadelphia and saw a hepatologist there. I did the

>interferon and ribavirin for one year, non- responder again. He wanted

>me to wait 6 more months to try the alpha 2b interfuron with ribavirin,

>which I did, and no response. By this time I was disguisted and working

>with the side effects as I am a single mom and said forget it, as he had

>another experimental study to put me in. A year went by and I started

>getting tired again and falling asleep in work. I demanded a biopsy. As

>you know the results, this happened in 5 years. Doctor has done

>colonoscopy, cat scan with contrast and all sorts of blood tests. The

>only things that came out high were my Hematocrit at 54.2 and my red

>blood cell (RBC)at 10.22. I am two points high on my amonia test but

>still can't remember anything and now I'm talking backwards like

>dylexia. The dr. now wants to put me on Epiver with Pegasus but not the

>pegasus that is coming out. He will explain everything to me in two

>weeks. My spleen is swollen and he says it's because of my liver. I was

>in the ER and they gave me liquid morphine for the pain. I am totally

>lost here as he knows I am very upset and put me on anti-depressants as

>we know the medication makes things a little worse but I haven't had any

>thoughts of suicide as I have 3 children. Any information would be

>greatly appreciated and thanks again. My son just started the combo and

>hasn't had any side effects as of yet as I give him a benadryl before

>each shot. He thinks he's gonna die so he is in counseling and me on

>transplant now really scares him as he has done the interfuron before.

>Thanks again,

>Sue

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hi Syd,

Thanks so much for helping me out. I found out in 1995 I had hepc. Had a

biopsy done and it was confirmed that I had chronic, active, hepatitis c

with minimal damage. I took interfuron for one year when they had the

large needles and you had to mix the stuff yourself. My viral load came

down to about 20 million but of course, non-responder. I waited 6 months

and went to Philadelphia and saw a hepatologist there. I did the

interferon and ribavirin for one year, non- responder again. He wanted

me to wait 6 more months to try the alpha 2b interfuron with ribavirin,

which I did, and no response. By this time I was disguisted and working

with the side effects as I am a single mom and said forget it, as he had

another experimental study to put me in. A year went by and I started

getting tired again and falling asleep in work. I demanded a biopsy. As

you know the results, this happened in 5 years. Doctor has done

colonoscopy, cat scan with contrast and all sorts of blood tests. The

only things that came out high were my Hematocrit at 54.2 and my red

blood cell (RBC)at 10.22. I am two points high on my amonia test but

still can't remember anything and now I'm talking backwards like

dylexia. The dr. now wants to put me on Epiver with Pegasus but not the

pegasus that is coming out. He will explain everything to me in two

weeks. My spleen is swollen and he says it's because of my liver. I was

in the ER and they gave me liquid morphine for the pain. I am totally

lost here as he knows I am very upset and put me on anti-depressants as

we know the medication makes things a little worse but I haven't had any

thoughts of suicide as I have 3 children. Any information would be

greatly appreciated and thanks again. My son just started the combo and

hasn't had any side effects as of yet as I give him a benadryl before

each shot. He thinks he's gonna die so he is in counseling and me on

transplant now really scares him as he has done the interfuron before.

Thanks again,

Sue

[Guest guest]

I will Syd and thanks so much. I really do enjoy this list.

Sue

http://community.webtv.net/sky_08610CentralJerseyHepC

[Guest guest]

Hi tprevitte. Welcome!

I think the surgery you are describing is a Tibial Tubercle Transfer

(or TTT). Is that right everyone?

To get you started, you can use the " Search Archive " feature of this

Group. You can find it on the " Home " page and the " Messages " page.

Just type in " Tibial Tubercle Transfer " or " TTT " in the box and click

on " Search Archive. "

There have been many posts on that surgery over the last couple of

years.

Good luck,

Doug

> Hello

> I am a new member to the group. I have had two surgeries on my

right

> knee with no help.Been thru PT twice . Plus talking about needing

> another one . This surgery I dont know the exact name of it but the

> lower part of the tibia is cut in half somehow, shifted over and

> screws are put in. Anyone have any luck with the knee popping ,

> grinding, dislocating. If so what was done for it. Thanks alot.

>

> tprevitte

[Guest guest]

> Hi i'm new:)

Hi, Rhonda. Care to tell us anything about yourself? Food plan, exercise

schedule? Trigger foods and how you avoid them?

Sue in NJ

[Guest guest]

Welcome NEW... Gives us your info.

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

[Guest guest]

Can you walk very far (like a mile)? If so, if might help to do that regularly,

since cycling uses only certain muscles.

Ann

Hi i'm new

Hello i thought i would introduce myself as i am a new member. I am

Clements im 33 and am a racing cyclist and have been cycling

since i was 14 and have been having knee problems since i was about

19 i think i have CP from the cycling and have at the moment knee

pain in both knees but the pain in only from the swelling rather than

from the injury itself. I have gleened alot of information from all

the posts i look forward to reading them in the future.

Regards

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

[Guest guest]

michelle wrote:

> Anyone have theories on what caused them to get A? I have one myself

> but would like to hear from group.

I would love to hear you theory. Digging into what causes A has become kind

of a hobby for me. When I was younger fishing was one of my favorite

things. Now I a cast my bait on google and see what I pull in.

My current theory is that it is caused by a " perfect storm " of troubles.

Not one cause, but a combination of causes that together trigger

a cascading degenerative process that continues long after the perfect

storm has passed. For different people the perfect storm could have been

different combinations of things. Some of those things may be: viruses,

metals, stress, insufficient vitamins, genetics, toxins or injuries. Once

the damage is started a combination of chemicals released by damaged cells

combines with chemicals released by immune system cells to damage more

cells, and so starts the cascade. What looks like just a neural

degenerative disease, may actually be from the destruction of cells that

support the nerves, glia cells, Interstitial cells of Cajal and others. As

these cells are damaged the nerves they support also suffer damage, and the

immune systems is triggered to heal the tissues. Unfortunately, the immune

response in this case further damages the nerves and the destructions

spreads. At this point it can look like an autoimmune cause, but there is

research that implies that even though antibodies to neurons can sometimes

be found, the response is not sufficient to explain the damage. It may be

that what appears to be autoimmune destruction is actually the bodies way

of cleaning up neural damage, but the stress of the cleanup adds to the

stress causing the destruction. If the other factors of the cascade (not

the storm which may be long gone) could be stopped the immune system

response would possibly stop.

notan

[Guest guest]

Hi ,

Welcome to the group !! You will find we all have a different combination of symptoms - it is what make us such a diverse and interesting group.

As for causes - with my history I would go for the autoimmune origin plus the viral theory. Severe allergies and osteoarthritis plus a history of 2 episodes of severe viral infections as an adult. Its any one's guess right now!

Do join in the chatter and discussions - it make thing so interesting when we get opinions from all sides.

Joan

Hi I'm New

Hi Everyone-new to the group but I've had A for over 20 years! Wow, just reading all of these posts and seeing the numbers of people in this group has been pretty cool in a way. I would certainly not wish A on anyone but I've only ever met one other person who had it - and she had very different symptoms than I did.I was finally - after 2-3 years of problems - diagnosed at age 15. Had several dilations and surgery in 1989. Surgery fixed swallowing problems mostly but increased spasms. I'm 36, live in Virginia Beach, married, 2 year old girl at home and another due in February. I work in advertsing sales.Through years of trial and error, I'm taking only Protonix and have only 'bad' spasm attacks 3-4 times/year.Anyone have theories on what caused them to get A? I have one myself but would like to hear from group.Anyone have special home remedies they use that help?My personal favorites are ginger - take capsules daily and drink tea when in pain and vanilla yogurt - seems to take the pain of spasms away quite a bit of the time.Hope to learn and share more.

[Guest guest]

Very interesting theory Notan ! When I look back this could well have been what happened to me.

Joan

Re: Hi I'm New

michelle wrote:> Anyone have theories on what caused them to get A? I have one myself> but would like to hear from group.I would love to hear you theory. Digging into what causes A has become kind of a hobby for me. When I was younger fishing was one of my favorite things. Now I a cast my bait on google and see what I pull in.My current theory is that it is caused by a "perfect storm" of troubles. Not one cause, but a combination of causes that together trigger a cascading degenerative process that continues long after the perfect storm has passed. For different people the perfect storm could have been different combinations of things. Some of those things may be: viruses, metals, stress, insufficient vitamins, genetics, toxins or injuries. Once the damage is started a combination of chemicals released by damaged cells combines with chemicals released by immune system cells to damage more cells, and so starts the cascade. What looks like just a neural degenerative disease, may actually be from the destruction of cells that support the nerves, glia cells, Interstitial cells of Cajal and others. As these cells are damaged the nerves they support also suffer damage, and the immune systems is triggered to heal the tissues. Unfortunately, the immune response in this case further damages the nerves and the destructions spreads. At this point it can look like an autoimmune cause, but there is research that implies that even though antibodies to neurons can sometimes be found, the response is not sufficient to explain the damage. It may be that what appears to be autoimmune destruction is actually the bodies way of cleaning up neural damage, but the stress of the cleanup adds to the stress causing the destruction. If the other factors of the cascade (not the storm which may be long gone) could be stopped the immune system response would possibly stop.notan

[Guest guest]

Hi ,

Welcome to the group. I'm from the Hampton Roads area too. My husband and I live just over the border in South Mills, NC right now, but I lived in Virginia Beach for about 13 years before that. Who did your surgery? The reason I'm asking is that I'm scheduled to have my Heller next month on the 21st. My surgeon is Dr. Hubbard of Norfolk Surgical Group. I've met with him twice and he seems very experienced and knowledgable, but I was just wondering if you might have heard anything about him. I was diagnosed with A. four years ago and was doing pretty well on Nifedipine until about 6 months ago. Have to admit I'm a little nervous about the surgery.

Anyway, it's nice to see someone from the area on this list.

Take care,

Jannie

Hi I'm New Hi Everyone-new to the group but I've had A for over 20 years! Wow, just reading all of these posts and seeing the numbers of people in this group has been pretty cool in a way. I would certainly not wish A on anyone but I've only ever met one other person who had it - and she had very different symptoms than I did.I was finally - after 2-3 years of problems - diagnosed at age 15. Had several dilations and surgery in 1989. Surgery fixed swallowing problems mostly but increased spasms. I'm 36, live in Virginia Beach, married, 2 year old girl at home and another due in February. I work in advertsing sales.Through years of trial and error, I'm taking only Protonix and have only 'bad' spasm attacks 3-4 times/year.Anyone have theories on what caused them to get A? I have one myself but would like to hear from group.Anyone have special home remedies they use that help?My personal favorites are ginger - take capsules daily and drink tea when in pain and vanilla yogurt - seems to take the pain of spasms away quite a bit of the time.Hope to learn and share more.

[Guest guest]

Hi Jannie,

I am making mental notes of which of us are getting surgery next

month.

You are on the 21st and I am on the 22nd. I think there was

somebody else too. I go to CC on the 21st for all the pre-op stuff -

how about you?

My brother just got his Doctorate on the Tuba and teaches at a

college in North Carolina. It is so pretty in your state but driving

the hills makes me queasy. Does it bother you at all?

Joy (in Michigan)

[Guest guest]

Jennie;

Just a commet I drink tea often too, when i have the spasms and

crackers.

Siiri

>

[Guest guest]

> Jennie;

>

> Just a commet I drink tea often too, when i have the spasms and

> crackers.

>

> Siiri

> >

Hi Siiri- I find that plain vanilla yogurt really helps my spasms as

well as the herbal and/or ginger tea.

Hope it helps

-

[Guest guest]

-Hi V,

Welcome. If you like step...I think Charlene Prickett is pretty good

for " clumsy people " as you like to say. Her steps are pretty hard to

goof up and you can raise and lower the step depending on how

challenging you want to make the Cardio workout. I am not real

knowledgeable on the dance workout front...I really haven't found

one I really liked all that much. I've tried Kathy 's Latin

Rhythm Workout, but I don't consider it much of a " workout " per se'

although, it is okay for a change of pace......it has a little salsa

and cha-cha if you like that sort of thing. I'm sure someone in the

group can recommend something in the dance workout area.

Welcome again.

Robin

-- In , " crushedangels " <vhardin@h...>

wrote:

>

>

> I would have posted the other ideas but my lists kept crashing.

> I do Pick your Spot Pilates. My huby has been so helpfull to me

and my

> new love for Exercise?

> Anyone have a dance work out or cardio for a clummsy person?

>

> V

[Guest guest]

>hi

>i'm new to this group. i'm new to perume to.

i'm a mom of 8 kids and a wife. i have many

different things i'm interested in. i like

doing all kinds of crafts. thanks for having me

>here bonnie

Hi Bonnie,

Glad you finally got here.

I've been checking to see if we had any new members.

Welcome

[Guest guest]

Glad to hear from you. I was interested in your comment about how the

doctors never mentioned that you shouldn't lift heavy things. My

doctor never did, either, and I think that all the people that had

this surgery would have had the same experience. Most of the doctors

watched our progress after we had the surgery and while we were in

our bodycasts, and then, they wished us a good life. Mine just said

not to ride horses or motorcycles or anything along that line. I did

ride on the back of my husband's street motorcycle for many miles,

and it never bothered my back....it's as smooth as a car. Now off-

road motorcycling or quad-runners, that is a whole different story!!

That would be a no-no!! Just common sense! Any way, I always felt

that I could take jobs that involved lifting and any heavy straining

of the back. No one told me that--I guess I just had a little inner

voice telling me--or just knew my limitations. I've always taken jubs

that mostly involve sitting (office jobs) Tried a job in a store

(mostly standing) but that, 20 yrs. ago brought on the pain from

flatback now that I look back on it. Now, like you, I found out I

have DDD, arthritis, and who knows what else. I can't stand very

long, can't walk very long and can't even think of lifting or pushing

something heavy(which I never did anyway) The only think i can think

is all these doctors that did this harrington surgery 20-30-40 years

ago just thought it would take care of all the problems of a curved

spine, not realizing making the spine too straight brings on it's own

problems. I made it 10 yrs. postop with no or very little pain, and

got my first pains in lower back 20 yrs. ago.

Carol V.

>

> I would like to introduce

> myself. My name is Marci,

> I had surgury for

> scoliosis in Worcester,

> Ma. U-Mass Hosp. in 1980.

> It has been a slow

> progression of decline

> since then. I was a

> nursing assistant for

> many years. I know now I

> should have never done

> that, it hurt me greatly.

> But my doctors back

> then never gave me any

> warnings that I shouldn't

> do a job that involves

> lifting. I now think that

> it escalated the

> progression of my DDD,

> wich I have been

> diagnosed with in 2003.

> Now I work as a

> telemarketer or

> fundraising, anything

> where I can sit down and

> only work from 20-24

> hours a week.

> Needless to say it is

> hard to pay rent.

> but right now I am

> making it, as for the

> future your guess is as

> good as mine.

> Lots of love, Marci

>

[Guest guest]

Welcome to the group, Marci, in case no one else has welcomed you as

yet.

You will find lots of empathy here. We have other members who have

done patient care and other work that was hard on their " bad backs. "

I know that DDD can be truly agonizing. I hope that you do not have

any additional complications from your scoliosis surgery. If you

suspect that something else is going on and are looking for a

definitive diagnosis, I can highly recommend Dr. Rand at New

England Baptist Hospital in Boston.

Just to clarify, most of the people in this group have flatback

syndrome, a sagittal plane deformity resulting from our Harrington

rod instrumentation. So our problems may or may not be very similar

to yours. I hope you have also checked out some of the other more

general scoliosis groups available on line.

Best,

>

> I would like to introduce

> myself. My name is Marci,

> I had surgury for

> scoliosis in Worcester,

> Ma. U-Mass Hosp. in 1980.

> It has been a slow

> progression of decline

> since then. I was a

> nursing assistant for

> many years. I know now I

> should have never done

> that, it hurt me greatly.

> But my doctors back

> then never gave me any

> warnings that I shouldn't

> do a job that involves

> lifting. I now think that

> it escalated the

> progression of my DDD,

> wich I have been

> diagnosed with in 2003.

> Now I work as a

> telemarketer or

> fundraising, anything

> where I can sit down and

> only work from 20-24

> hours a week.

> Needless to say it is

> hard to pay rent.

> but right now I am

> making it, as for the

> future your guess is as

> good as mine.

> Lots of love, Marci

>

[Guest guest]

Hi . Nice to meet you. I am emily. I am 39 and have about 120 pounds to lose. I totally relate to being out of breath and everything else you mentioned. I also have a number of health problems. You have come to the right group for support and encouragement. Post often. <kareknits@...> wrote: Hello everybody, thank you for letting me join this wonderful group. Ithink I'm right where I'm supposed to be. My name is and I'm 53, married, retired and have

about 75 lbs tolose. I love to cook, embroider, read cookbooks, and go fishing.Hubby and I are kind of doing the South Beach diet together. At leastwe are eating healthier, and starting to hike in the woods where we live.I want this weight to be gone so bad so I can start living the good life.With this much weight to lose I get tired or SOB or weak in the knees,and so upset with myself that I got this fat in the first place.I have HBP, I'm pre-diabetic and where plus size clothes. What couldbe worse?OK I got that all out, I'm off the pity pot ready to start a new daywith new supportive friends.Do we share recipes here too?

[Guest guest]

Hi -

Welcome to our group and good luck on your SB journey. We can do pretty much whatever we want here, so if you have recipes to share, send them our way. There are some in the files section of our group, if you are looking for some to try.

I'm , 40 single mom of 3 boys: 11, 13, 15 - and other than being 80 lbs overweight still, I don't have any of the related health issues that you mention (luckily). My BP is ok and my cholesterol in check. Whew.

Anyway. Nice to meet you and look forward to following your successes.

Have a great week!

in WACreate a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

Cindi

If it is anything like my fusion surgery, slip on shoes are a life saver as you

cannot bend down to tie your shoes. Keeping things at waist level or above is a

big plus as well. Have your family or friends put things you will need during

the day if you are by yourself up on the kitchen table or counters so you do not

have to bend or stretch to get them. Keep some loose comfy clothing along. I

was very swollen from my surgery and you could be too. A long loose dress or

something you dont have to get up or down the first few days was much easier

than pull on pants. I did not have a toilet adaptor or shower seat but a friend

did and she said it was a life saver for her too!

I used a body pillow to keep me propped up and helped me stay a bit more comfy,

nothing felt good and I could not sleep for ages after that surgery but it did

help to have support there.

Have frozen dinners or other things that you can just stick in the microwave or

fix easily you probably wont feel like cooking for a while either.

Good luck!

hi i'm new

HI I'M CINDI, I AM WAITING TO GET A SURGERY DATE FOR MY PERM SCS, I

SEEMS LIKE IT HAS TAKEN FOREVER. I WAS WONDERING IS THERE ANYTHING I

COULD GET TO HELP IN MY RECOVERY, I BOUGHT A GRAPPER, I THOUGHT THAT

WOULD BE HELPFUL. ANY OTHER SUGGESTIONS WOULD BE HELPFUL. I WILL LET

YOU KNOW WHEN THE SURGERY WILL WILL BE THANKS IN ADVANCE

CINDI