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sweetcharmedlife Rocks Off Regular Offline Do the horrendous to that if you can Posts: 11,943 San Mateo Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #200 - Apr 25^th, 2010 at 2:40pm Fingers crossed and continued thoughts and prayers for you Mary. I can't imagine how I would be able to handle something like this. God only knows how you are. But we're rooting for you that's for sure.
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keefchik

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #201 - Apr 28^th, 2010 at 2:50pm

GotToRollMe wrote on Apr 25^th, 2010 at 2:13pm:

I'm going to post more in this thread when I have something concrete. For now, I can tell you that I met a man named Angel yesterday who turned out to be a real angel. He's offered to be a donor - he's 29, never done drugs, doesn't drink, and is in great health. He really wants to do this for me. A complete stranger wants to save my life - something my own brother wouldn't do.

However, I'm getting mixed information from the medical establishment regarding how sick I have to be before I can get a transplant - apparently the MELD score (Model for End-stage Liver Disease) is different in every state. In New York it's 25; in Florida it's 15. The liver expert doctor told me that blood type doesn't matter, while everywhere else I've researched says it's the first criterion in donor compatibility. And now he wants to put me on Interferon. I dunno.

Ellen, for all I know this man may not be compatible with me. I have to go back to the hospital this coming Friday, and I'm going to see what I can do about getting you guys tested. I will keep you posted as to all aspects. You've been very patient, and I appreciate it. I wish I had more news for you, but so far this is it. Fingers crossed, kid!

Your liver doctor is a hepatologist and not just a gastro right ??? that sucks about the issues with the MELD score, i was wondering about that...

If they are talking about putting you on interfuron you must still have hep-c, if you do a transplant and still have hep-c the new liver will get infected as well ... so im guessing you never treated for the hepatitis???? you can treat now but with the stage of your liver damage it will be rough... do you have any idea what genotype you are? If you are type 2 or 3 the chances of clearing the hepatitis with the current treatment is about 80%...

this is a good site for info about hep-c...http://www.janis7hepc.com/

and i just want to put it out there, if ANYONE has EVER used IV drugs GET TESTED ... NOW.... i got tested about 6 years ago because some people i know who were past IV drug users were all hep-c positive, i have stage 2 liver damage (stage 4 is cirrosis), if you don't know you have it, you cant try and get rid of it and if you drink with it, your liver damage can happen much quicker...

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Lantern_High Rocks Off Regular Offline Rocks Off Rules You Bastards Posts: 426	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #202 - Apr 30^th, 2010 at 2:42am Thanks to Lady Jane and Mary for the news. We all are with you Mary. hoping (?) no waiting to see you still here for long time longer. But watch out with interferone. I dont think is correct use it, seeing your situation. I wish you all my wishes for your visit of today. Keep on rolling
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Steel Wheels

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #203 - Apr 30^th, 2010 at 8:55am

I cannot seem to locate the information on here this morning, but isn't Bernard Fowler on tour? If he is appearing near your town, make the effort to go see the gig and try to get his attention turned onto this website for help. It can't hurt to go and spread the word some. We never know who might be listening.

Steel Wheels
'Rolling for some Help!"

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Devoted Stones fan since time began. SMILE. THE ROLLING STONES ARE HERE.

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GotToRollMe

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #204 - Apr 30^th, 2010 at 1:34pm

keefchik wrote on Apr 28^th, 2010 at 2:50pm:

Your liver doctor is a hepatologist and not just a gastro right ??? that sucks about the issues with the MELD score, i was wondering about that...

If they are talking about putting you on interfuron you must still have hep-c, if you do a transplant and still have hep-c the new liver will get infected as well ... so im guessing you never treated for the hepatitis???? you can treat now but with the stage of your liver damage it will be rough... do you have any idea what genotype you are? If you are type 2 or 3 the chances of clearing the hepatitis with the current treatment is about 80%...

this is a good site for info about hep-c...http://www.janis7hepc.com/

and i just want to put it out there, if ANYONE has EVER used IV drugs GET TESTED ... NOW.... i got tested about 6 years ago because some people i know who were past IV drug users were all hep-c positive, i have stage 2 liver damage (stage 4 is cirrosis), if you don't know you have it, you cant try and get rid of it and if you drink with it, your liver damage can happen much quicker...

He's a liver specialist - a hepatologist. Montefiore has an entire wing dedicated to liver disease. I had to reschedule today's appointment tp early June. My hepatitis was already advanced to cirrhosis when I was diagnosed, keefchik, so at this stage of the game I think interferon would only make it feel a bit better and even lower my MELD - which, frankly, I don't need. I want to be healthy enough to live through surgery, so I'm really better off just letting it get a little worse until I get to a MELD of 15, when I'd be eligible for a transplant in Florida.

So far, the people whom I've talked to who've had it done have all had to take the bull by the horns and get things done despite their hepatologist's advice. Although I still have hepatitis, the new liver may not become infected. There are drugs available to help prevent reinfection. Even if it does, hopefully I can get 20 years out of it, which is all I really need. I'm in my early 50's now.

I just want to enjoy this weekend and take a few days off from all this. I'm unbelievably exhausted from dealing with this every day. It's like a 24-hour-a-day job that never ends.

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« Last Edit: Apr 30^th, 2010 at 4:10pm by GotToRollMe »

"She delivers right on time,&&I can't resist a corny line, &&But take the shine right off your shoes"&&&&"When I die I want to be burned and blown up Gazza's ass. Is he up for that? Is he a true stones fan. I know Voodoo would do it." - TomL '07&& &&..'til the wheels come off...

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Gazza Unholy Trinity Admin Offline Rat Bastid "We piss anywhere, man.." Posts: 13,231 Belfast, UK Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #205 - Apr 30^th, 2010 at 2:23pm Birthday weekend too. Enjoy it!
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sweetcharmedlife Rocks Off Regular Offline Do the horrendous to that if you can Posts: 11,943 San Mateo Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #206 - Apr 30^th, 2010 at 3:33pm Happy Birthday GTRM. Enjoy it.
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Rolling Hansie Rocks Off Regular Offline KEEP ON ROLLING Posts: 234 Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #207 - Apr 30^th, 2010 at 5:18pm Get some rest and have some fun.
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keefchik

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #208 - Apr 30^th, 2010 at 10:07pm

ok yea i was jus checking i figured with your sitch you would have to be seeing a hepa DR and not just a regular GI but you'd be surprised i have talked to people with advance liver disease and some are still just seeing a gastro...

AND YES you are RIGHT if you get a new liver, it will take a while for the hep to get it, and you could treat then with probably better results and be able to tolerate the treatment better than now.... and next year they are coming out with a protease inhibitor drug to be added to the standard treatment of interfuron & riba and the odds of clearing with this new drug added are WAY better than standard interfuron & riba alone...

So, do WHATEVER YOU CAN to get the old liver out and a new one in asap ... i wish you all the best, stay strong, drink lots of water, keep taking the milk thistle, and watch the diet, very low sodium/iron, super low fat, no refined sugars, etc, im sure you know i just cant shut the fuck up sorry lol... and ya get as much rest as possible

also, people can live for YEARS with cirrosis, dont give up hope, whatever you do...may the good lord shine a light on you, you have alot of people praying for you right now...

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« Last Edit: Apr 30^th, 2010 at 10:08pm by keefchik »

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keefchik Rocks Off Regular Offline Rocks Off Rules You Bastards Posts: 60 NEW JERSEY Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #209 - Apr 30^th, 2010 at 10:11pm oh and btw HAPPY BDAY my taurus sister!! today was my birthday, had a good one, hope you have a good day too!
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Kilroy Rocks Off Regular Offline I love this place! Posts: 2,863 Mickville Virginny USA Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #210 - Apr 30^th, 2010 at 10:58pm Happy Birthday to both of Yall.................Now Blow out the Candles.
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LadyJane Rocks Off Regular Offline Stones Purist Posts: 4,929 Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #211 - Apr 30^th, 2010 at 11:02pm This thread is breaking my heart. I'm SO sorry you are suffering. Please feel the collective hug from ALL of us, both of you. Be Keith-like and look Hep in the face and say Fuck You. hugs, LJ.
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keefchik

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #212 - May 1^st, 2010 at 12:50am

I say FUCK YOU to my hep every day of my life lol... got to scrape that shit right off your shoes.. i try and be ok but sometimes im not, i worry alot, i could be in Mare's situation any day now, im a bit younger and pretty lucky so far with my liver damage being minimal which is fucking mind blowing considering the way i used to drink.. but the hep gets stronger as your body gets weaker (i.e. OLDER) im 48 now, who knows what my liver wil be like in few years... its fucked up... and the thing about liver failure is alot of the time you dont know its happening until its too late...

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AngieBlue Rocks Off Regular Offline Rocks Off Rules You Bastards Posts: 792 Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #213 - May 1^st, 2010 at 11:02am Enjoy your B-Day Mary!
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GotToRollMe

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #214 - May 1^st, 2010 at 1:02pm

keefchik wrote on Apr 30^th, 2010 at 10:07pm:

ok yea i was jus checking i figured with your sitch you would have to be seeing a hepa DR and not just a regular GI but you'd be surprised i have talked to people with advance liver disease and some are still just seeing a gastro...

AND YES you are RIGHT if you get a new liver, it will take a while for the hep to get it, and you could treat then with probably better results and be able to tolerate the treatment better than now.... and next year they are coming out with a protease inhibitor drug to be added to the standard treatment of interfuron & riba and the odds of clearing with this new drug added are WAY better than standard interfuron & riba alone...

So, do WHATEVER YOU CAN to get the old liver out and a new one in asap ... i wish you all the best, stay strong, drink lots of water, keep taking the milk thistle, and watch the diet, very low sodium/iron, super low fat, no refined sugars, etc, im sure you know i just cant shut the fuck up sorry lol... and ya get as much rest as possible

also, people can live for YEARS with cirrosis, dont give up hope, whatever you do...may the good lord shine a light on you, you have alot of people praying for you right now...

Thanks, keefchik. You're a good soul, and I appreciate the info. I hope you've been getting treatment, because I've heard of people who've been treated and cured, but you have to get to it before it does too much damage. I'm praying for you, kid. And Happy Birthday to you too! All the coolest people were born in May (or so I've heard). Grin

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"She delivers right on time,&&I can't resist a corny line, &&But take the shine right off your shoes"&&&&"When I die I want to be burned and blown up Gazza's ass. Is he up for that? Is he a true stones fan. I know Voodoo would do it." - TomL '07&& &&..'til the wheels come off...

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #215 - May 1^st, 2010 at 4:02pm

Just stoping by to add my 2 cents. My friend's boyfriend was treated using platelet transfusions, it helped him a great deal. His numbers were between 8-12 and unfortunately he did not qualify for the transplant, so this is a tricky situation. If the numbers are too high you dont qualify and if too low you dont qualify either. You've got to constantly be on top of it and take the bull by the horns. Sorry you have to go through this GTRM, and Keefchik you seem to have the right attitude!

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keefchik

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #216 - May 2^nd, 2010 at 2:25pm

i treated once about 5 years ago with interfuron and a drug call viramadine, it was a clinical trial, i decided to do it because the standard treatment of interfuron and riba only has about a 50% chance of working in most people who have hep-c unless you are genotype 2 or 3... they cant tell what type i am, had a million tests and they cant figure it out... anyway i did the trial because it was free and the viramadine was very similar to the ribavivarin but riba cause severe anemia in alot of people, they were testing the viramadine to see if it worked as well as the riba without the anemia... which it does not, clearance rate was only 30-40%. which is why it was never FDA approved, its fucking useless.

Anyway, i had a liver biopsy 6 years ago and just had another one this past December and my liver damage has actually improved a little bit, i think its maybe because im taking milk thistle and not drinking as much...plus I completely cut out fast food and i eat very little red meat and lots of organic foods.. and my doctor thinks i can wait for the FDA to approve the new protease inhibitor drug addition to the treatment, the odds of clearing with the added drug are WAY better than now and they think the treatment time might be shorter as well... standard treatment right now for type 2-3 is 6 months, for anyone else its a year... thats an injection of interfuron once a week (ya maybe since i got this from a needle i will get rid of it from a needle as well HAAAAAAA) and the riba pills twice a day...

ok thas my hep-c info for the day, i'll shut the fuck up now...

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keefchik Rocks Off Regular Offline Rocks Off Rules You Bastards Posts: 60 NEW JERSEY Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #217 - May 13^th, 2010 at 12:21am Has anyone heard how Mary is doing, is there any updates?
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GotToRollMe Rocks Off Regular Offline 'soft and freaky' Posts: 1,918 Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #218 - May 13^th, 2010 at 3:06am Nothing to report. I have to get the compatibility bloodwork done, then I just have to get a bit sicker until I'm eligible to get a transplant.
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Steel Wheels Rocks Off Regular Offline Much love and support to my dear friend Mary! Posts: 2,686 2,000 Light Years From Home Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #219 - May 17^th, 2010 at 10:00pm I think about you all the time Mary! Yer pal, Steel Wheels
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Gazza Unholy Trinity Admin Offline Rat Bastid "We piss anywhere, man.." Posts: 13,231 Belfast, UK Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #220 - May 18^th, 2010 at 12:07pm Steel Wheels wrote on May 17^th, 2010 at 10:00pm: I think about you all the time Mary! Yer pal, Steel Wheels Nice sidebar message, young sir!
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Mr. Yeats Rocks Off Regular Offline Nothing beats fun for a good time. Posts: 704 Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #221 - May 18^th, 2010 at 2:29pm Yo, GTRM- Just saying 'hi' here, and I've been reading through this thread and you seem such a cool and lovely woman, with heart, brains and GUTS. Just wishing you, again, all the best. And happy 'Exile' day to you as well! Peace, love and hairspray! (And gold rings on ya, too!).
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GotToRollMe

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #222 - May 18^th, 2010 at 2:52pm

Gazza wrote on May 18^th, 2010 at 12:07pm:

Steel Wheels wrote on May 17^th, 2010 at 10:00pm:

I think about you all the time Mary!

Yer pal,
Steel Wheels

Nice sidebar message, young sir! Smiley

Indeed - didn't even see that til you pointed it out!
SW is the man who'll give ya roses when ya ain't got none...

Thanks to Mr. Yeats, as well!

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"She delivers right on time,&&I can't resist a corny line, &&But take the shine right off your shoes"&&&&"When I die I want to be burned and blown up Gazza's ass. Is he up for that? Is he a true stones fan. I know Voodoo would do it." - TomL '07&& &&..'til the wheels come off...

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chevysales

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Re: ASKING FOR YOUR HELP - PLEASE READ
Reply #223 - May 18^th, 2010 at 2:59pm

GotToRollMe wrote on Jan 23^rd, 2010 at 5:03pm:

My Fellow Stones Fans,

This is not easy for me, but I'm at the point where I can't worry about being judged for something stupid I did almost 20 years ago.

I recently found out I have Hepatitis, and it's at the point now where I need to publicly solicit donors. If I can't find a compatible donor, chances are I'll have less than a year or two to live. I'm already on medication that is making me feel ill every day. The way a living donation works is they find a compatible donor (same blood type, body mass index, etc.) in good health and take a piece or "lobe" from their liver and transplant it. The liver actually regenerates and grows back to its original state within a few months.

They take the entire "bad" liver out of the recipient and replace it with this "lobe," and if I'm lucky my body won't reject it and I'd get to live a normal lifespan, albeit on regenerative drugs. I'd be ecstatic just to have another 10 years at this point. You see, I look after my mom, who is 88 years old. The thought of leaving her here alone is more than I can bear. Most of my family are gone, and the few who are left cannot care for her. I have no family I can solicit as donors either.

Last year, there were something like 6,500 transplants. There are currently 17,000 people on national waiting lists. I live in the New York area, so my chances of getting a compatible donor are slim to none. My blood type is O+. I'm asking everyone I know, because the more people who are aware of this, the better my chances are. Please don't turn this into a discussion thread. If you can help or know someone who can, PM me.

Here is a link explaining living liver donation:

http://www.liverfoundation.org/education/info/transplant/

http://www.livingdonorsonline.org/liver/liver.htm

Thanks to the mods for allowing me to make this public plea. If you know me personally, you know how hard it is for me to "go public" with this. I'm putting my faith in the Stones Community.

i wish you the best ... i had hep twice... serum of course as late seventies thats all that defined the two... serum and infectious. no "C" no type 1/2... they have made huge strides where before all there was were gamoglobun (sp) shots...

many have done things at a younger age without thinking twice about the outcome... heck as you know it's amazing some made it out alive... or living for the prgm.... either way hope it all works out for you.
good luck

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GotToRollMe Rocks Off Regular Offline 'soft and freaky' Posts: 1,918 Gender:	Re: ASKING FOR YOUR HELP - PLEASE READ Reply #224 - May 19^th, 2010 at 12:49pm Thanks, Chevy. When people like you come out and tell me you've had hep, it makes me feel like less of a pariah. Thanks for that, and for your good wishes. It's nice to see you back!
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