Re: Oh Deb :( - - Oh :0)

October 7, 2008

Re: Hi and Welcome to All New Members and Oldies but Goodies/Oh Deb

What stage are you and how quickly are you progressing

:0) Yep I'm Italian grandmother from Sickly and Ragin Cajun with a big Italian nose honker won the biggest honker contest in group what a combo. That was my best typo ever had to announce me in group as Winner Biggest Honker and typed Biggest Hooker. Talk about a freudian slip and wanting to do everything I always wanted to do but never did and got the 2nd chance post transplant. Damn haven't completed that one it's ok I'm good. Haaaaaaaaa I am damn good and very proud of it.

Honey I hate to be the bearer of bad news not for about me HCV in general but it needs to be told and very importantly needs to be fully understood by all of us with HCV or of a loved one.

HCV post transplant is very different much more complex and our total medical dx's complications sides also much more complex. We are in a totally different medical

ballgame and timetable now.

If someone is in HCV/ESLD it is because they did not or could not clear it and are going into a transplant with very aggressive established HCV.

It is medically proven universal immediately after a clean HCV free transplant our HCV comes back with a vengeance more aggressive forms faster stages thrives multiples like crazy and from us weakened by major transplant surgery and now on immunosuppresants anti rejection rx's to save our lives and not reject new transplanted liver. HCV cells are and travel body wide now medically know can reproduce outside the liver survive with a blood source and found buried deep within body tissues. The goal now is for tx before transplant to clear or reduce as much of the viral load right before transplant and than when medically stable enough post op start on tx's again to clear as much as possible for as long as possible slowing up the aggressive forms of HCV and the faster progressions.

Very toxic anti rejection meds are keeping us alive but also causing our faster more aggressive HCV timetables very much harder to clear stay clear from tx's very little immune systems for tx meds to work best and with much serious rx's sides complications related dx's or our other forms of dx's symptoms becoming much worse. All tx meds and trial meds research are not geared or for post transplant pt's.

Their goals and for tx's if better more successful safer forms of tx in earliest stages for better tx long term medical outcomes with the best price tags and for prevention.

The medical goal also known now by trial and error of us oldies post tp is to wean people down to lowest doses of anti-rejection meds off multiple rx's of it of rx's totally if possible ASAP for better long term prognosis outcomes clearing and longer and far less additional serious permanent complications dx's from the rx's. A person needs a healthy as possible immune system to help fight off everything possible.

There are no tx's especially designed for us post transplant. There is also official discussions within UNOS tp boards why offer a 2nd liver transplant for repeat HCV/ESLD when it is universal for all less treatable less favorable outcomes less favorable long term survivals repeat transplants when we have such a shortage of donated organs livers for the thousands listed every day for their 1st transplants and gifts of life and so many not receiving it simply because of the dire shortage of organ donors.

In talking with many others also post transplant many years out in faster advancing stages again we feel the same give the 1st timers listed the better hope better odds and The Gift of Life. We already received our Miracle and our odds are much less now or even to be medically approved for a 2nd transplant.

Us old timers post transplant had much more aggressive forms of our HCV going into our tp's much more complications related and non-related dx's pre and post op and after care. HCV medical research tx's medical advances have been on the fast track the last few years and with many medical breakthroughs improvements in our medical care tx's and yes even for liver transplant surgeries pre and post op care and tx's and improvements of longer long term survival rates.

In general a person is in very bad medical shape in ESLD terminal going into a liver transplant our only hope for survival is the Medical Miracle The Gift of Life a successful liver transplant.

No one can image that great high that true Epiphany feeling your end of ESLD having to make all final arrangements than being Blessed given a true Miracle a 2nd Chance at Life however long we don't care we truly appreciate it. The gifts of now truly understanding the deeper meanings of life love and for your fellow man or woman just had to throw that 1 in.

Being in ESLD all the dx's complications related or non-related than going through a liver transplant pre and post op are also very individualized medical conditions prognoses like our having HCV and all our other dx's.

We follow the norm post transplant and we also have our own set of unique individual medical problems all dx's complications care tx's rx's the works different for each 1 of us and our short long term prognoses too.

We all are still different and unique and Honey I am the most unique medical case combo mixes you or medical science has ever seen or probably will ever see.

Yep I have been a long term medical research case study in the making continue to surprise and baffle them to this day and for my future. My prognosis 3 to 5 good years post transplant. Hell No !!!!!!!!!!! I made it longer and not good but great and will continue too as long as I can still breathe.

Ok I'm rambling on again so I'll try to make it short and in a nut shell about me.

Next March and I plan like hell being here and much longer - you know what they say about bad grass and it also gives ya a bad buzz - I'll be 8 years from my transplant Thank God and My Donor my own young nephew excellent donor liver. I've had very chronic very serious multi medical dx's conditions syndromes complications my entire life besides all my 32 years with HCV and now with it a fast progression again post transplant. For me tx's pre and post op I was a failed responder. I knew that was my medical odds going into tx's and had to be medically pulled of tx's. Also knew my odds 3 to 5 good years post transplant if I made it that far had still have very excellent honest straight forward relationships with all my dr's and research dr's. But I'm not about to give in give up not try no matter what.

I had a very rough transplant post op and now and with all my medical abby normal unique combo's. It has been stump all my dr's for many many years and - I don't know medical science doesn't know yet - We Don't Know.

I beat many bad rejection episodes too post tp failed tx have been very stable and monthly labs for long time now. Medically no need for further liver bx's or viral loads for me nothing more medically at this time can be done and for some of my other dx's. I'm not medically eligible for tx or repeat transplant. My medical risks are too great and not eligible anyway.

I've been on medical Comfort Care for awhile now. That's a nice sounding medical term when all else has failed make the pt as comfortable as possible just can try to relieve tx symptoms.

I have a gaggle of medical specialists all coordinating my complete medical care and rx's with my same pre and post op Hepatologist medical researcher and professor. Hummmmmm wonder how many papers he published acknowledgments he got from me all these years. He's a local character too great Dr. guy personality sense of humor loves the attention like years ago co-authoring Sugar Busters under gastro dr wasn't enough. Shhhhhhhhhh he still considers himself a lady's man does a good job of it too but very happily married with kids. He's in charge of my total medical care rx's options with monthly full labs routine visits and keeping my comfort rx's as liver friendly for me as possible.

My Dr's better keep me as comfy as possible cause they know me very well and my mouth. I don't hold my tongue but never in threatening ways cause I fully need them and need me to be a fully cooperative pt. Yep they know exactly where I stand and know to be fully honest and open with me for me to make my best decision making choices for me my life working alongside and with them.

I learned the hard way very early not to cut off my big nose to spite my face.

I didn't create this group for or about me but for all others. I've been there and back again can handle it and thankfully have enough love and support outside of group for all my HCV and all my medical problems and prognoses.

I drive people crazy up the walls in person on the phone and in private emails with all my overwhelming crap.

People that know me well know I purposely don't discuss all my medical dx's problems in group. I would overwhelm group members tie it up and become an entire support group by myself.

I do welcome and discuss all my experiences and of talking with others HCV tx's esld pre and post transplant without the need or want despise sympathy for me or attention about my prognoses.

It's not the length of my life or 2nd chance at life that is most important to me.

It is the quality and enjoyment of my life and with loved ones that means the most to me and how much I can give back to others my promise I made up above if He saw fit for me to make it post transplant.

Damn I hate attention focus on me. I love being behind the keyboard and yes I admit preaching for the best outcomes quality of lives for others.

My best advise people from someone who has been there twice.

Seek the best medical care and tx's from the most skilled trained experienced Hepatologist you can find if in later stages same Hepatologist on the Transplant Team Board you want to use and list with for transplant get your both feet in the door with them under their care as early or ASAP. Do tx's as early as possible earliest in stage/grade for better long term results clearing less sides. Do tx's as much as possible as long as many times to clear as medically safe possible for you. If you think you have time to wait on disease progressions vs's new better tx's out I hope and pray you made the correct decision for you.

Hope and pray for better safer more effective forms of tx's forms of HCV inhibitors that seek out attack HCV not use us the host to do it with so many serious sides from it. For all geno's all stages pre and post tp for everyone out and made available to everyone without insurance financial concerns top priority ASAP.

Did you get the early or earliest parts and factors.

That's so no one else or as few as possible need to experience ESLD from HCV and in need of a life sustaining liver transplant that are in very short supply and donors.

Remember to always keep a great sense of humor attitude and about ourselves laugh as much as possible and about ourselves.

My favorite saying is - F It shit happens can't stop it just makes the best of it anyway.

Oh no she didn't say that not her. Haaaaaaaaaaaa and you think you know me so well fooled ya.

Got a brain cramp need to take a break after this one. I did spell check but it all looks good didn't have the umph to reread it. If I confused anyone typos have questions just post away.

Catch y'all later. Yes y'all is a word down here.

All The Best To Everyone.

Deb

FAD no FAF !!!!!!!!!!!!

October 7, 2008

Not what I wanted to hear but glad you said it I plan to be a

medical miracle studied in text books as well. Right now I have to

believe in the impossible and so far the impossible has happened on

Tx for me. I am making liers out of all my Doctors and plan to

continue to do so. I'm a crazy Canuck with a family to match. Some

people have a God to help them, I have many Gods and my bet healing

tool is diet. I have used it all my life to heal and will do so no

matter how sick I become. If or when I get to the point I can no

longer prepare meals then my like minded husband and family will do

it for me or I will hire a companion service.

Miracles are not as rare as they once were. I see and talk to people

who have had them occur every time I go to Mayo for check ups.

Keep up the fight sweetie! I think its that stubborn french blood and

good gene's that will help us both go above and beyond the norm My

Grandmother who passed away recently was the Mother of 15 children

all born at home. All her children except 2 are alive and well. She

was on top of the world until the last year of her life when her

heart started to go and she was 106 years old when she quietly passed

away in her sleep. Not because of any disease process just simply her

heart got tired and went to sleep. Her life was so unique it made it

to the internet. Anyone can find my Grandmothers history. Her name

was Laferriere in Eagle Lake, Maine. A truly amazing woman

who I miss so much. I was sorry to give up that last name

Laferriere

Dragon Fighter Extraordinaire

>

> Re: Hi and Welcome to All New Members and Oldies but Goodies/Oh

Deb

>

> What stage are you and how quickly are you progressing

>

> :0) Yep I'm Italian grandmother from Sickly and Ragin Cajun with a

big Italian nose honker won the biggest honker contest in group what

a combo. That was my best typo ever had to announce me in group as

Winner Biggest Honker and typed Biggest Hooker. Talk about a

freudian slip and wanting to do everything I always wanted to do but

never did and got the 2nd chance post transplant. Damn haven't

completed that one it's ok I'm good. Haaaaaaaaa I am damn good and

very proud of it.

>

> Honey I hate to be the bearer of bad news not for about me HCV in

general but it needs to be told and very importantly needs to be

fully understood by all of us with HCV or of a loved one.

>

> HCV post transplant is very different much more complex and our

total medical dx's complications sides also much more complex. We

are in a totally different medical

> ballgame and timetable now.

>

> If someone is in HCV/ESLD it is because they did not or could not

clear it and are going into a transplant with very aggressive

established HCV.

>

> It is medically proven universal immediately after a clean HCV free

transplant our HCV comes back with a vengeance more aggressive

forms faster stages thrives multiples like crazy and from us weakened

by major transplant surgery and now on immunosuppresants anti

rejection rx's to save our lives and not reject new transplanted

liver. HCV cells are and travel body wide now medically know can

reproduce outside the liver survive with a blood source and found

buried deep within body tissues. The goal now is for tx before

transplant to clear or reduce as much of the viral load right before

transplant and than when medically stable enough post op start on

tx's again to clear as much as possible for as long as possible

slowing up the aggressive forms of HCV and the faster progressions.

>

> Very toxic anti rejection meds are keeping us alive but also

causing our faster more aggressive HCV timetables very much harder to

clear stay clear from tx's very little immune systems for tx meds to

work best and with much serious rx's sides complications related dx's

or our other forms of dx's symptoms becoming much worse. All tx meds

and trial meds research are not geared or for post transplant pt's.

> Their goals and for tx's if better more successful safer forms of

tx in earliest stages for better tx long term medical outcomes with

the best price tags and for prevention.

>

> The medical goal also known now by trial and error of us

oldies post tp is to wean people down to lowest doses of anti-

rejection meds off multiple rx's of it of rx's totally if possible

ASAP for better long term prognosis outcomes clearing and longer and

far less additional serious permanent complications dx's from the

rx's. A person needs a healthy as possible immune system to help

fight off everything possible.

>

> There are no tx's especially designed for us post transplant.

There is also official discussions within UNOS tp boards why offer a

2nd liver transplant for repeat HCV/ESLD when it is universal for all

less treatable less favorable outcomes less favorable long term

survivals repeat transplants when we have such a shortage of donated

organs livers for the thousands listed every day for their 1st

transplants and gifts of life and so many not receiving it simply

because of the dire shortage of organ donors.

>

> In talking with many others also post transplant many years out in

faster advancing stages again we feel the same give the 1st timers

listed the better hope better odds and The Gift of Life. We already

received our Miracle and our odds are much less now or even to be

medically approved for a 2nd transplant.

>

> Us old timers post transplant had much more aggressive forms of our

HCV going into our tp's much more complications related and non-

related dx's pre and post op and after care. HCV medical research

tx's medical advances have been on the fast track the last few years

and with many medical breakthroughs improvements in our medical care

tx's and yes even for liver transplant surgeries pre and post op care

and tx's and improvements of longer long term survival rates.

>

> In general a person is in very bad medical shape in ESLD terminal

going into a liver transplant our only hope for survival is the

Medical Miracle The Gift of Life a successful liver transplant.

>

> No one can image that great high that true Epiphany feeling

your end of ESLD having to make all final arrangements than being

Blessed given a true Miracle a 2nd Chance at Life however long we

don't care we truly appreciate it. The gifts of now truly

understanding the deeper meanings of life love and for your fellow

man or woman just had to throw that 1 in.

>

> Being in ESLD all the dx's complications related or non-related

than going through a liver transplant pre and post op are also very

individualized medical conditions prognoses like our having HCV and

all our other dx's.

>

> We follow the norm post transplant and we also have our own set of

unique individual medical problems all dx's complications care tx's

rx's the works different for each 1 of us and our short long term

prognoses too.

>

> We all are still different and unique and Honey I am the most

unique medical case combo mixes you or medical science has ever seen

or probably will ever see.

>

> Yep I have been a long term medical research case study in the

making continue to surprise and baffle them to this day and for my

future. My prognosis 3 to 5 good years post transplant. Hell

No !!!!!!!!!!! I made it longer and not good but great and will

continue too as long as I can still breathe.

>

> Ok I'm rambling on again so I'll try to make it short and in a nut

shell about me.

>

> Next March and I plan like hell being here and much longer - you

know what they say about bad grass and it also gives ya a bad buzz -

I'll be 8 years from my transplant Thank God and My Donor my own

young nephew excellent donor liver. I've had very chronic very

serious multi medical dx's conditions syndromes complications my

entire life besides all my 32 years with HCV and now with it a fast

progression again post transplant. For me tx's pre and post op I was

a failed responder. I knew that was my medical odds going into tx's

and had to be medically pulled of tx's. Also knew my odds 3 to 5

good years post transplant if I made it that far had still have very

excellent honest straight forward relationships with all my dr's and

research dr's. But I'm not about to give in give up not try no

matter what.

>

> I had a very rough transplant post op and now and with all my

medical abby normal unique combo's. It has been stump all my dr's

for many many years and - I don't know medical science doesn't know

yet - We Don't Know.

>

> I beat many bad rejection episodes too post tp failed tx have been

very stable and monthly labs for long time now. Medically no need

for further liver bx's or viral loads for me nothing more medically

at this time can be done and for some of my other dx's. I'm not

medically eligible for tx or repeat transplant. My medical risks are

too great and not eligible anyway.

>

> I've been on medical Comfort Care for awhile now. That's a nice

sounding medical term when all else has failed make the pt as

comfortable as possible just can try to relieve tx symptoms.

>

> I have a gaggle of medical specialists all coordinating my complete

medical care and rx's with my same pre and post op Hepatologist

medical researcher and professor. Hummmmmm wonder how many papers

he published acknowledgments he got from me all these years. He's a

local character too great Dr. guy personality sense of humor loves

the attention like years ago co-authoring Sugar Busters under gastro

dr wasn't enough. Shhhhhhhhhh he still considers himself a lady's

man does a good job of it too but very happily married with

kids. He's in charge of my total medical care rx's options with

monthly full labs routine visits and keeping my comfort rx's as liver

friendly for me as possible.

>

> My Dr's better keep me as comfy as possible cause they know me very

well and my mouth. I don't hold my tongue but never in threatening

ways cause I fully need them and need me to be a fully cooperative

pt. Yep they know exactly where I stand and know to be fully honest

and open with me for me to make my best decision making choices for

me my life working alongside and with them.

>

> I learned the hard way very early not to cut off my big nose to

spite my face.

>

> I didn't create this group for or about me but for all others.

I've been there and back again can handle it and thankfully have

enough love and support outside of group for all my HCV and all my

medical problems and prognoses.

>

> I drive people crazy up the walls in person on the phone and in

private emails with all my overwhelming crap.

>

> People that know me well know I purposely don't discuss all my

medical dx's problems in group. I would overwhelm group members tie

it up and become an entire support group by myself.

>

> I do welcome and discuss all my experiences and of talking with

others HCV tx's esld pre and post transplant without the need or want

despise sympathy for me or attention about my prognoses.

>

> It's not the length of my life or 2nd chance at life that is most

important to me.

>

> It is the quality and enjoyment of my life and with loved ones that

means the most to me and how much I can give back to others my

promise I made up above if He saw fit for me to make it post

transplant.

>

> Damn I hate attention focus on me. I love being behind the

keyboard and yes I admit preaching for the best outcomes quality of

lives for others.

>

> My best advise people from someone who has been there twice.

>

> Seek the best medical care and tx's from the most skilled trained

experienced Hepatologist you can find if in later stages same

Hepatologist on the Transplant Team Board you want to use and

list with for transplant get your both feet in the door with them

under their care as early or ASAP. Do tx's as early as possible

earliest in stage/grade for better long term results clearing less

sides. Do tx's as much as possible as long as many times to clear as

medically safe possible for you. If you think you have time to wait

on disease progressions vs's new better tx's out I hope and pray you

made the correct decision for you.

>

> Hope and pray for better safer more effective forms of tx's forms

of HCV inhibitors that seek out attack HCV not use us the host to do

it with so many serious sides from it. For all geno's all stages pre

and post tp for everyone out and made available to everyone without

insurance financial concerns top priority ASAP.

>

> Did you get the early or earliest parts and factors.

>

> That's so no one else or as few as possible need to experience ESLD

from HCV and in need of a life sustaining liver transplant that are

in very short supply and donors.

>

> Remember to always keep a great sense of humor attitude and about

ourselves laugh as much as possible and about ourselves.

>

> My favorite saying is - F It shit happens can't stop it just makes

the best of it anyway.

>

> Oh no she didn't say that not her. Haaaaaaaaaaaa and you think

you know me so well fooled ya.

>

> Got a brain cramp need to take a break after this one. I did spell

check but it all looks good didn't have the umph to reread it. If I

confused anyone typos have questions just post away.

>

> Catch y'all later. Yes y'all is a word down here.

>

> All The Best To Everyone.

>

> Deb

>

> FAD no FAF !!!!!!!!!!!!

>

October 7, 2008

Hi , Deb is known for shooting from the lip. She seldom tells you what you wanted to hear, she tells the truth. Every time! Sounds like we've got a few things in common here! I'm Canadian (but I live here, not in FLORIDA). The thing that caught my attention is your grandmother. Mine died a long time ago. She was pregnant with her 17th child -15 living & 7 still living (my Mum is the 2nd youngest & she's 78). I've never blamed her for dying - she was 46, I would've done it 13 kids earlier! I'm in ESLD & awaiting t p. My nephew has volunteered to donate but has to think more about it. He's setting up for testing right now. If he does back out, I'll

understand, it's a lot more dangerous & complicated than he thought. He's 24 - he thought he'd go into hospital, stay a day or two & be home by the end of the week. Silly boy. He'll be in ICU for a couple of days & in hospital for at least 10 to 14 days. At least he's not steadily employed right now. The docs give me anywhere from 1 - 5 years without the t p. I plan on fooling them too. I've been fighting this dragon for 40 years & I don't plan on quitting any time soon (or later)Take Care Girl,SuZie & Sir SpYke the Magnificent, sitting here next to me shedding all over the computer!Support Bacteria, they're the only culture some people have!