Introduction

[Guest guest]

http://hometown.aol.com/bwilson0404/inmatecasesaolhometowncom (DOT) html

[Guest guest]

http://hometown.aol.com/bwilson0404/inmatecasesaolhometowncom (DOT) html

[Guest guest]

KRISTINA,

i DONT THINK YOU COULD EVER BE MAD AT WHATEVER CHOICE SHE MAKES. I am on

infergen..daily shots. Rough treatment but tolerable. I am on for 1.5

years. I am undetectable. If i relapse i have a 3 month break and 2 more

years of it. There is no cure for interferon the best you can hope for is

to become a svr so it doesnt do any other damage. it can be a very hard

treatment for some its a personal choice

Introduction

Hi,

My name is a (27), I'm from WA and I am married with two boys. I am

a

labor support doula and considering midwifery in the next 10 years.

My mom has Hep C and I'm here to learn more about it, ways I can support

her, and get support myself. I feel really out of touch becuase I grew up

with a grandmother who was ill with diabetes (which my mother also has),

and

a bad heart. I kept hearing how she only 'had a year to live' and she'd

outlast, outlast.. I think I got desensitized. Now my mom is sick and

we're

at the point of getting her on a transplant list, and I still can't

believe

it. Denial is alive and well! lol

So let's see, here's what I know...

She's been on interfuron a couple of times, a couple of different types.

They've exhausted that avenue (all of my information comes from her, so I

don't know how true it is.. she has a tendency to spin things to make them

sound the way she wants them to.. she's an LPN too) and wanted to put her

on

some experimental interfuron which she decided not to do. They are trying

to

get her on the list for a transplant but she has to quit smoking and be

nicotine free for 2 months, which she has not been able to do. She also

has

diabetes, and beginning stages of emphysema. She's 46. *sigh...*

So this is my jumping off point. In my line of work, we have to be aware

of

several types of therapies, alternative ones being a biggie. I have

suggested to her to go to the library and educate herself on some of her

alternative options to these medications and treatments, but she insists

she

doesn't have time (I guess I come by my denial honestly!). I've encouraged

her to seek naturopathic and acupuncture care... she won't. She doesn't

" believe in all that stuff " , which I guess to someone who isn't accustomed

to it, believing in it would be an integral part of seeking it out! lol I

think she's going to 'denial' herself into the grave, and I think on some

level she knows it but is afraid to take charge of her health. I know I

can't take charge of it for her (despite her actual REQUESTS that I do)-

she

has to be responsible for herself, life or death... but it is *maddening*

to

me to have watched my (paternal) grandmother go through this exact same

thing, be in complete denial and die a really traumatic death, leaving

behind angry children and confused grandchildren. I am trying to release

my

mom in her own right to choose her life/death and not be angry but man I

can

already feel it happening.

So... that's us, where we're at now. Thanks for letting me join you all.

a

[Guest guest]

June 08, 2004 12:15 p.m. 199,560,000 People Infected With Hepatitis C.

What happened to that little girl so strong and sure who had the whole world

at her feet. Nothing could happen to her or her family they were the

special ones. The years go by and she finds out she is not the special one.

The divorce of her parents devastated her at thirteen. She was smart and

determined got good grades went to special all girls schools so she could be

a nurse and started getting high and smoking at 16. Everyone else was.

There was the tattoo that she and her girlfriend got when they were 17.

There were all the drugs and sex she had for years before she was told it

was not safe. She had been stabbed and shot. It really is surprising she

didn’t die of an overdose after all that. Then again she lived her life

with the motto of the times, “Live fast, Die young, and have a good looking

corpse.” She got married and got pregnant. Her husband didn’t want kids so

when she got pregnant the second time he left her. She had a choice babies

or him. She always felt she made the right choice. Her two boys had saved

her life. They were her whole world. She didn’t do drugs. She quit

cigarettes when the youngest came to her in tears what was he going to do if

something happened to her he had no one else. Some times she was so tired

and other times she hurt so bad. The Doctors couldn’t figure it out it must

be in her head. She felt so blessed that God had given her these two boys.

She did everything with her boys. They would go fishing and camping and do

a lot of fun things. She read an article in Newsweek and went to the Dr

and asked to be tested for Hepatitis C. She was positive. She was 1a the

hardest to cure. She was morning her life and her kids life. She was

blessed the kids tested negative. They talked about treatment and all

agreed no matter what it was worth trying. Two years later she is

undetectable. She has to wait 6 months after taking the toxic treatment to

see if she remains undetectable. The treatment has taken so much out of

her. Sometimes her youngest gets frustrated and tells her she is always

sick and tired, But she feels blessed to be there even if she has to stand

in the background to watch her sweet boys live their lives.

Currently, there are about 200 million people worldwide who are infected

with the Hepatitis C virus; 4.9 million of those are in the United States

(estimates go as high as 15 million) and 5 million in Western Europe. The

prevalence seems to be higher in Eastern Europe than in Western Europe. In

industrialized countries, HCV accounts for 20% of cases of acute Hepatitis,

70% of cases of chronic Hepatitis, 40% of cases of end-stage cirrhosis, 60%

of cases of hepatocellular carcinoma and 30% of liver transplants.

The incidence of new symptomatic infections has been estimated to be 13

cases/100,000 persons annually. For every one person that is infected with

the AIDS virus, there are more than four infected with Hepatitis C. The CDC

(Center For Disease Control) estimates that there are up to 230,000 new

Hepatitis C infections in the U.S. every year. Currently, 8,000 to 10,000

deaths each year are a result of HCV.

Over the next 10-20 years chronic Hepatitis C is predicted to become a major

burden on the health care system as patients who are currently asymptomatic

with relatively mild disease progress to end-stage liver disease and develop

hepatocellular carcinoma. Predictions in the USA indicate that there will be

a 60% increase in the incidence of cirrhosis, a 68% increase in hepatoma

incidence, a 279% increment in incidence of hepatic decompensation, a 528%

increase in the need for transplantation, and a 223% increase in liver death

rate.

There is no vaccine and no completely effective treatment!

[Guest guest]

When I click on this link, it says the page cannot be found.

Re: Introduction

http://hometown.aol.com/bwilson0404/inmatecasesaolhometowncom (DOT) html

[Guest guest]

Hi Mark

I had both of my hips replaced in 2001.....surgeries 6 months apart. I would have done the second surgery sooner if the doctor had been available. Don't know what your situation is but I had been walking (if you want to call it that) with a crutch for over a year. The first surgery went well but I couldn't get the full benefit until after the second surgery. That's when I started getting my life back. About 2 months after my surgery; my first grandchild was born.....now that's a real incentive to get movin. I really was able to push myself harder after the second surgery. I thank God every day for giving me my life back. Please feel free to ask specific questions.

Sally

[Guest guest]

Hi Mark,

I'm glad you got help from this group I get help also I had a Hip replacement five years ago and a Knee replacement two years ago the right side I was 56 at the time I wish I knew about this group before my operations but they help me now. I'll say a pray for you and anyone else I see that has a operations.I wish you the best of luck.

Susie

Just wanted to introduce myself. I feel as though I already know most of you. I have been reading your posts for the last few months and have found them very helpful.I am a 40 yr old male awaiting RTHR on Aug 3. I will then recoup for a few months and have the left hip done (lovely). I'm still a little nervous but not much longer now. Thanks for all the info I have gathered from the group.Prayers appreciated !Mark

[Guest guest]

Hi Wanda,

I'm sorry I can't be of much help but I did have a Hip replacement four years ago and a Knee replacement two years ago .

I just wanted to tell you that I wish you the best of luck for the operations you have to have I hope everything works out for you.

SusieWanda <granny_6@...> wrote:

HelloMy name is Wanda I am 48..I was guided to this group by a dear friend LarryA little history... I was in a car accident in 1978 that started all of thisI had a broken left femur and broken left hipI had my first Knee replacement in 1981 followed by a revision in 1992My Knee now needs replaced again as it is loose in the tibial componentand the plastic part of the knee is worn out from ageThe knee wobbles and is unstable the problem is the massive amount of cementthat is in the tibial componentI have been told it is going to be very hard if not impossible to removeTo compound the problem I had a broken femur above the knee that is at realrisk for a stress fractureAnother problem with the same leg is I had a Total Hip replacement in 1998which loosened and had to be revised in 2001The hip revision in 2001 never healed

correctly and I have been in constantpain since it has been inI went to a new doctor a few weeks ago and he told me all the risks ofsurgery as well as the benefitsI have to admit I am fearful of another revision on the knee and hipI have heard the more revisions a person has the harder the recovery is andthe chance for success is lessSo I am trying to live with this until I can no longer walk ..The new Doctorhas agreed to me waiting with him doing x-rays every 3 months and meagreeing to follow his decision when he feels it HAS to be fixed to avoid achance that he may be able to do nothing to help..I am hear to read and learn from othersThanks for listeningWanda

[Guest guest]

Hi Wanda, Neat to see you here. Welcome

Larry

At 03:40 PM 9/7/2004 -0400, you wrote:

Hello

My name is Wanda I am 48..I was guided to this group by a dear friend

Larry

A little history...

[Guest guest]

Thanks Larry

Wanda

<<<Hi Wanda, Neat to see you here. Welcome

Larry

[Guest guest]

Hi Wanda,

Welcome to the group.

Goodness, you sound like you have been through a lot, to say the

least!

You wrote:> So I am trying to live with this until I can no longer

walk ..The new Doctor

> has agreed to me waiting with him doing x-rays every 3 months and

me

> agreeing to follow his decision when he feels it HAS to be fixed

to avoid a

> chance that he may be able to do nothing to help..

I do worry about you waiting till the surgeon says the hip/knee HAS

to be replaced. It sounds dreadfully depressing to wait until you

can no longer walk. I just wonder if surgeons just say operations

will be risky/difficult until you are at the end of your tether and

then suddenly find a solution to your problems. I guess it depends

on how much pain you are in?

The reason I say this is that i am 31 I need a complex THR with

bone grafting, breaking of the femur and other things that my os

said were impossible until I said I cant take any more of this pain

and want surgery. Then all of a sudden the op became a standard

proceedure, no problem. Fair enough this is only my first THR but I

could well be on a third by 48. And who knows after that? They way I

finally saw it is that I could get run over by a bus next week, so I

may as well have the quality of life now.

I guess you will know when you feel the benefits outweigh the risks,

personally for yourself.And whether you feel strong enough for more

surgery. However, I do believe that no surgeon is going to suggest

surgery to a healthy patient, unless you press for it. I know my

surgeon would have never offered surgery till I said I cant stand

another day of this!!!

Well its nice have you in the group,

take care,

leigh

[Guest guest]

> Hello

> My name is Wanda I am 48..I was guided to this group by a dear my s

> So I am trying to live with this until I can no longer walk ..The

new Doctor

> has agreed to me waiting with him doing x-rays every 3 months and me

> agreeing to follow his decision when he feels it HAS to be fixed to

avoid a

> chance that he may be able to do nothing to help..

>

Wow!!!

Hello Wanda. Your plan of waiting, with x-rays every 3 months

sounds good. However, I might suggest doing the surgery while you

can still walk. Muscle strength is lost quicly when not used at all,

and that makes recovery harder. Plus it sometimes takes several

months to get the surgery all set up.

No offence, but stories like yours make my problems not seem so bad.

I am two weeks pre-op on my first hip replacement. Eventually, I

will probably need to have the other hip done, but am hoping this

will be all I need on the right side. Scared to death, but it sounds

like nothing compared to all you have been through, and still have

ahead of you.

Good luck,

[Guest guest]

Thanks for the welcome Leigh

I have been to 3 different surgeons all saying about the same thing

The last one sent me to a specialty center that routinely does revisions and

the doctor was fantastic but he told me the same thing

He can see all the things that are wrong mechanically..the hip also has a

" skirt " on it to bring the length down and the " skirt " catches on the cup

and tries to dislocate a lot

When it does this the pain is horrible

There are lots wrong with the knee and hip and this orthopedic say he will

be as aggressive as I want him to be BUT since my first hip last only 3

years and this one did not heal correctly and it has not been quite 3 years

I am afraid ...

I also have nerve damage so I cannot exercise like most folks can so the

muscles are very weak..I cannot do leg raises while laying on my side..he

said all the therapy in the world could not fix it because during one of the

surgeries too much was taken off the bone and nerve damage will not allow me

to raise it

Good luck with your surgery I truly hope it does wonderful for you and

alleviates your pain..it sounds like a very complicated procedure

Please let us know how you do

Wanda

[Guest guest]

Best of luck with your hip replacement

It sounds like it will really help you feel better

I go back to my doctor in November

The knee is getting very wobbly I have fallen twice this week

so I do not know what he will say

Wanda

<< Wow!!!

Hello Wanda. Your plan of waiting, with x-rays every 3 months

sounds good. However, I might suggest doing the surgery while you

can still walk. Muscle strength is lost quickly when not used at all,

and that makes recovery harder. Plus it sometimes takes several

months to get the surgery all set up.

[Guest guest]

Hi Wanda, welcome. I am a new member to from Indiana. I have learned

so much from the members. This is a great group. Hope to talk soon.

Annie

> >Hello

> >My name is Wanda I am 48..I was guided to this group by a dear

friend Larry

> >A little history...

[Guest guest]

Let them go in and do surgery. you are really risking more with your

life by putting this off than just biting the bullet and having it

done. I know what it is like to fall. I fell for many years and went

to 4 different specialists before i found out what was really wrong

with me. I had one knee surgery in '98. Still kept falling for

another 3 years, everytime i finished therapy. Come to find out, all

these so-call specialist in Chicago could not tell me the problem.

When I moved to Indiana and found a specialist here, he told me the

problem on my first visit after taking merchant xrays in his office.

He sent me for a 2nd opinion 3 dayss later, then saw him the

following weeks and 5 days after that, I had both knees done at the

same time. He promised me I would not fall again, and to date, I have

not, but the damage of all those falls, have left my shoulders in a

wreck. Have the surgery. I will be praying for you. Good luck and be

safe.

Love Annie in IN

>

>

> Best of luck with your hip replacement

> It sounds like it will really help you feel better

>

> I go back to my doctor in November

> The knee is getting very wobbly I have fallen twice this week

> so I do not know what he will say

>

> Wanda

>

> << Wow!!!

> Hello Wanda. Your plan of waiting, with x-rays every 3

months

> sounds good. However, I might suggest doing the surgery while you

> can still walk. Muscle strength is lost quickly when not used at

all,

> and that makes recovery harder. Plus it sometimes takes several

> months to get the surgery all set up.

[Guest guest]

Wanda

I didn't

know your knee was that unstable. Did the Doc say any thing about a

brace for the instability. You might ask about a brace at least to

prolong the time so you don't need to go to surgery.

Larry

I go back to my doctor in

November

The knee is getting very wobbly I have fallen twice this week

so I do not know what he will say

Wanda

[Guest guest]

Larry

The knee wobbles from side to side

The dr wobbled it in the office and told me how unstable it is

He said he was surprised I am still walking on it LOL

He did not mention a brace BUT I imagine that is because the femur above it

is in bad shape

I will ask him about a brace when I see him next

Wanda

<<<Wanda

I didn't know your knee was that unstable. Did the Doc say any

thing about a brace for the instability. You might ask about a brace at

least to prolong the time so you don't need to go to surgery.

Larry

[Guest guest]

Hi

Good to hear from you and welcome to the group. It

sounds like you have been through it somewhat and some

of your story is not disimilar to mine. My

congenitally dislocated hip was not diagnosed until I

was 3 when I under went a open reduction and Oseteomy.

Mine was successful and I lived a relatively pain

free life until the last couple of years.

Thanks for answering my questions about length of time

before I can try walking and driving. I kinda new

what the answer would be but was just hoping that

someone would say differently. Ultimately though I

would definetly give up a few weeks now to try and

prolong the length of my hip.

Its good to hear that you have had some pain free and

quality life from your hip and revision and hope that

the next surgery brings you more relief. Do you have

surgery planned?

Anyway, good luck with anything and thanks again for

answering

Liney

___________________________________________________________ALL-NEW

Messenger - all new features - even more fun! http://uk.messenger.

[Guest guest]

Hi Liney,

I had a LTHR revision done on 18 August. Like you I was non weight

bearing for 6 weeks.

After seeing the surgeon he said I could go to full weightbearing as I

felt comfortable. The next day I went out, for 4 hours, with only one

stick and over did it completely. At 11 weeks I am still having

difficulty putting full weight on my leg. I still have pain when full

weightbearing, although in the house I do walk most of the time

without a stick. I have a terrible wabble although this is improving

very slowly.

At my check up the surgeon also gave me permission to drive so I have

been able to drive myself everywhere.

My secretary comes to visit me once a week and to update me on what is

happening at work. She says each week she notices the improvements in

my walking. But it seems dammm slow to me.

I was telling my niece how I was being told I was improving, but

couldn't notice the changes myself. She is a nursing student, and a

very practical young lady. She suggested that I get someone to

videotape my walking each week to help me see the changes.

I notice my strength is coming back. I have done many more things in

the house, washing, cooking meals and even baking for my son. I have

a number of clients who contact me by messenger and I am finding

that I don't find the client contact as stressful as I did.

Some of my situation will not apply to you. In Australia public

transport is practically non existent, especially where I live, so

being able to drive allows you to get out of the house. I am also

firmly of the belief that the instructions we are given are more about

doctor preference than science fact based reasons.

I chose to obey my doctors instructions because:

1 he knew what he had done in there.

2 I had had 12 wonderful years from the last hip with a similar routine.

It is interesting to note that what is frowned upon in one place (eg

me stretching my operated leg backwards and bending the other knee to

pick up something) is taught as correct proceedure in another country.

I can remember the young Occupational Therapist being most abusive to

me when I showed her that. But the reality is it is practical, and

does not compramise angles, so I will continue to do it. I have to

work out ways to live as normal a life as possible.

I find this group so encourageing and informative. Thanks to all who

contribute to it.

Margaret from Australia

> Hi

>

> Good to hear from you and welcome to the group. It

> sounds like you have been through it somewhat and some

> of your story is not disimilar to mine. My

> congenitally dislocated hip was not diagnosed until I

> was 3 when I under went a open reduction and Oseteomy.

> Mine was successful and I lived a relatively pain

> free life until the last couple of years.

>

> Thanks for answering my questions about length of time

> before I can try walking and driving. I kinda new

> what the answer would be but was just hoping that

> someone would say differently. Ultimately though I

> would definetly give up a few weeks now to try and

> prolong the length of my hip.

>

> Its good to hear that you have had some pain free and

> quality life from your hip and revision and hope that

> the next surgery brings you more relief. Do you have

> surgery planned?

>

> Anyway, good luck with anything and thanks again for

> answering

>

> Liney

>

>

>

>

>

> ___________________________________________________________ALL-NEW

Messenger - all new features - even more fun!

http://uk.messenger.

[Guest guest]

Hi ,

I'm Leigh in Scotland (31). Similar history to yourself. CDH found

at 2, closed reductions with plaster casts and calipers till 5

unsucessful. Osteotomy 1984-sucessful. I had my first THR 3 and a

half weeks ago, sucessful so far. I had some bone grafts with this

THR and I do think proceedures are getting quite good at replacing

lost bone so that we may be able to get as many revisions as we can

endure, endure being the word.

I just wanted to say Hi and I just cant even begin to imagine how

hellish it must be to have udergone that surgery twice and to be

facing it again. I hope you are not in too much pain just now and

are feeling emotionally strong. ours is not the easiest of lives but

I guess thats what makes us such nice people :-)

Welcome and best wishes,

Leigh

[Guest guest]

Mallepaddi,

Welcome to ! <smile>

First off, let me assure you that all of your concerns are normal and those

many of us on this list can relate to.

When I told people that I was going to be evaluated for a CI, I didn't give

it serious consideration until after I spoke to 3 audiologists who were

familiar with my hearing loss. My CI application spent close to a month

sitting in a drawer because I thought I had too much hearing to qualify as a

candidate.

However, after continuing to struggle with communication even in quiet

one-on-one situations, being embarrassed at a luncheon because I couldn't

hear and being locked indoors inside a building because I couldn't hear

people leaving, I decided to be evaluated for a CI. Given how little I could

hear in the first place, I had nothing to lose. One thing that's nice about

the CI evaluation process is that you're not obligated to have surgery. If

at any point you feel that getting a CI isn't the right choice for you, the

evaluation will be halted.

When I completed the evaluation process and was declared a candidate, I

still had alot of questions running through my head and none of it really

hit home until my surgeon told me how excited and happy he was -- and how

much my life would change for the better once I had my CI. It was then that

I knew -- really knew -- that I was ready to take this journey without

looking back. As many people on this list will probably tell you, if they

had to do it all over again, they would. Myself included!

Best of luck to you whatever you decide! I hope you'll continue to share

your questions, concerns, feelings, etc. with us. I don't know how I would

have made it without the love, help and support of this forum.

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

Dear Sreedhar Mallepaddi,

It is a hard decision and one that should not be made lightly. My biggest

concern has always been the cost. But once I found out my insurance would cover

it, I have been full speed ahead, well until they wanted to do an MRI, that set

me back some. But that is done and I am ready to be implanted. I always wanted

to be a " bionic " woman!!!

--

ie Nix

CI Candidate

HOH for 40 years

Double BTE aids for last 12 years

" ie " in CI chat

-------------- Original message --------------

I have been lurking this forum for a long time. A lot of you guys

have been giving or writing a lot about the success of the CI. I

still have not made up my mind about when to go for a CI evaluation.

hehe. I am always scared of the surgeries. I did have a small

surgery 2 months back for the removal of a cyst and that sure

freaked me out.

I am happy to hear that lisa , linda and others(sorry if i forgot ur

names) are doing great with the CI. Writing about the moments and

joys of the CI brought me joy and tears. I did have the same moments

and joys when I first started using Impact. Of late, it is been 4

years since i first started using impact, my hearing have decreased

(cannot hear the water dripping in the sink or the headlights left

on by mistake or the railway gate crossing sounds anymore). Three of

my audi, 2 in the bayarea and one in manhattan had asked me to

consider a CI. I am still waiting for the right moment.

oops, my bad manners, i should have introduced myself first. I am

sreedhar mallepaddi and is profoundly deaf since birth. I have been

wearing hearing aids since the age of 2.

Ravi, good luck for ur surgery. my prayers are with u. hope

everything goes well for u. To the other members of this group who

is going to have a surgery too.

take care and have a nice time.

[Guest guest]

thanks a lot lisa, nikki ,scottie and the others, your messages meant

a lot to me. I knew that this group is a fanstastic one and it is like

one big family.

If i do have any questions, I knew i could ask this group.

smiles.

[Guest guest]

At 08:20 PM 8/25/05, you wrote:

>My name is , I am new to your group. I have had 2 back

>surgeries, neither have helped. I am in pain all the time; from my

>lower back to my feet on both sides. The doctors can't seem to help

>and I'm not having any more surgeries. I can hardly walk anymore. I

>am in pain management so I can go to work and support my family. I

>would appreciate any links or advice any of you may have.

>Thanks in advance!

>

Hi , and welcome. I came to this group in the last few months

because I've had (4) Surgeries, 3 lower back and (1) neck, and I'm still

in pain. I have good days, and bad days. Yesterday was good so I

pushed, so today's a little rough. I just want to let you know you are

not alone. My Brother in law had (1) surgery and was cured. I don't think

he knows how blessed he was. He has 2 teenage boys, they horse

around, He just got a Cycle, he goes white water rafting, all things I

can only dream of. The more people I meet the fewer I believe are actually

cured by surgery. But don't quote that as gospel, that's just my

opinion. Of course those who are doing great don't meet on-line and tell

each other how lucky they were they just go on living. Never give up

looking for answers, but my one suggestion would be to find a good pain

management doctor. also what works for me besides 24x7 pain killers is Ice

Packs, Nightly 5 minute massages with an electric percussion massage wand

by my wife, occasionally a Tens nerve stimulator, a massaging matt on my

bed that was $50 at sears. I wear a Back brace most all of the time the

support helps the pain, and knowing and respecting my limits. That

doesn't mean I lie like a dog, Yesterday I traveled, today I paid for

it. I'm 44, have a very understanding wife, and a 20 year old daughter

who has come around, now that she's an EMT and see's pain from a different

perspective. My wife and I closed our business this past spring after 15

years. I just couldn't;t keep up, and I've applied for Disability though

Binder and Binder lawyers. Fortunately my wife found a job she likes

doing what we did together, Photography, and we moved in with my

Mother-in-law since disability takes at least 1.5 years generally

longer. But I'm at 4 surgeries, you mileage may vary.

Welcome ask questions, complain, but your not alone in whatever you

feel. Dave