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Ok as some of you know I was taken off treatment by my Dr. at 12 weeks because of the seriousness of infection after infection and other medical problems that is just another long story. So I go to my Dr. yesterday to talk to him about what our next step is and BOOM!! He hits me with "well, I've never seen a better reaction to treatment from a geno 1 patient, you went from 3.6 million viral load to 0 in 12 weeks" he was amazed and pratically jumping up and down. Of course then I'm like so this means you're going to want me to continue on with the 48 weeks, he says yes. But what about all the horrible, near deadly immune problems? He wants to send me to an infectious disease doc asap to see if maybe there is some kind of other deficancy going on, but of couse he is pushing me to do everything quickly because I've been of treatment for 3 1/2 weeks now and if we don;t hurry up and continue we'll have to start over again and my response may not be as good.....
I am not sure what to do, I won;t know much till I see the new doc and if I do go back on tx I need SOME kind immunoglobulan or something to keep me from constant infection. Truthfully I am scared- scared not to continue with tx at this good stage and scard to continue tx because of how sick I got.............. need advice my friends..............
I am not sure what to do, I won;t know much till I see the new doc and if I do go back on tx I need SOME kind immunoglobulan or something to keep me from constant infection. Truthfully I am scared- scared not to continue with tx at this good stage and scard to continue tx because of how sick I got.............. need advice my friends..............
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Re: Need advice my friends...
Fri, May 26, 2006 - 1:34 PMHi Tiffany
I have a online friend from another forum who had two shots of interferon and she couldn't take it, made her really, really ill. She ended up in hospital and it's taken her nearly a year to get over it.
I don't know too much about the medical side but would have thought if you had such a good response maybe they could cut down the dosage? or antibiotics? probably dumb suggestions Tiffany but I really don't know.
Hey, that was good getting such a good response, at least you know that treatment works for you. Certainly sounds worth going for if they can come up with a way of keeping the infections down during treatment.
Take care...Tracey
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Re: Need advice my friends...
Fri, May 26, 2006 - 7:05 PMTiffany,
It's never easy to decide how to appoach each phase of this virus and/or treatment, but I would suggest that you quickly make the appointment with the specialist... Make a list of questions and concerns for both doctors. Then make your decision when you have as much information as possible.
I also think that the doctor has every reason to be thrilled with your results... geno 1 is a rough one.
Most of all... go with you own insticts.
Hugs,
T -
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Re: Need advice my friends...
Sat, May 27, 2006 - 7:18 AMWith such a good response, I would continue on. -
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Re: Need advice my friends...
Sat, May 27, 2006 - 8:03 AMDO IT!
I have a friend who is really sick and they are just waiting until she is well enough, not well mind you, well enough to go on treatment. She's got this persistent idea that she doesn't want to die of liver disease.
Tiffany, on treatment I had a sinus infection for months and I thought it would never go away, I also had the lady infection the whole time. Minor I know. But I had from day 1, psych issues from the ribaviron, not I'm a bit depressed or angry for the moment issues. I'm tough Tiffany, like you, and I said, f it, and went through it and just told my head and heart to eff off, bitched to my psychiatrist and just kept saying to myself, don't quit before the miracle and I made it through to today where I am still having the psych issues from coming off the ribaviron. It was and is worth it. And if I have a sustained viral response, I'll get into a study and do it all over again.
There are lots of factors in making the decision, not just side affects, and whatever you decide to do Tiffany, I'm behind you 100%.
Bev -
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Re: Need advice my friends...
Sun, May 28, 2006 - 4:55 PMThanx you guys!! for all your supprt and advice- I don't know who else to turn to cause no one understands......
My mom says- no, it almost killed you wait and see if they have another treatment in a few years. My boyfriend says go for it one minute and then maybe not the next. But like you said I have to make the decision myself and do what's best for me, not yet sure what that is yet but always helps to hear from people who know and understand what all this bulls*** is like! -
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Re: Need advice my friends...
Sun, May 28, 2006 - 5:23 PMHey Tiffany,
We are behind whatever decision you make.,... 100%.
The main thing is that you must believe in the decision yourself.... trust yourself.... then at least you will give it your all and be able to commit to your decision... no matter what.
Big Hugs,
T -
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Re: Need advice my friends...
Sun, May 28, 2006 - 9:08 PMI was told that my case was mild and I there were no treatments.
Next I was told that I had fatty liver but my case was mild and that they weren't treating people like me. I was told that I was 1:1 and since I contracted it appx. 20 years ago, it would move to the next stage in another 20 years, i.e., stage 2:2 at 40 and 3:3 at 60 so I didn't need treatment.
Next I was told that my case was mild (he didn't mention a viral load of almost a million) and while treatments were getting better it would be better to wait a few years until they were alot better.
Next he asked how he could help me and looked at me in shock when I pointed out he had been my hepatologist for the last 10 years. He went on to tell me I was depressed.
Next I went my general and said, referral. Not asked, said, because clearly he felt no need to monitor my fatal illness.
Next I was told my case was mild and my physical and depressive complaints were real, valid and for that reason alone I should try treatment. Digression: Isn't it sick that it takes 15 years and a passel of western doctors to find one recognized that I was sick and not a malingerer? Also that the stages generally grow greater in 10 years (not 20)(and from someone else now I've heard 7).
In my travels I've now met a group of us, and I have a friend who went from 1:1 to cirrosis in something like five years. She is too sick now to go on interferon. Sick every day, she isn't on transplant list.
So, every day it's a whole new thing. That is what makes healthcare decisions so difficult for me.
Tiffany, you live in a big city right? I'm sure they have a support group at the hospital, and if they don't maybe if you talk to them about it, they may be willing to start one. I know, you are too sick to do that or probably to sick to even go. I just thought I would suggest it in case you are up and able and interested.
Take good care Tiffany. We're here with you. -
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Re: Need advice my friends...
Mon, May 29, 2006 - 1:50 AMThat's the thing with all this, there is no definite guidelines and it's all so confusing. I personaly think everyone with hep c should be offered treatment. I was told when first diagnosed, it's nothing to worry about, after a biopsy it showed that there was something to worry about! I think if I'd left it 5 more years it would have been too late. It is a potentially fatal disease.
Funny, I was told I was depressed and a malingerer but then, my doc admitted he knows little. I reckon it all boils down to finance.
It's a tough decision for you Tiffany. I would say get some good advice and then decide.
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Re: Need advice my friends...
Tue, May 30, 2006 - 9:12 AMYeah- it's a tough one, I keep going back and forth....I see the infectious disease guy on friday, am hoping he'll be able to suggest something maybe immune boosters or antivirals, something to keep these infections away. My doc keeps saying I am a mystery yet I do appreciate his aggressivnes in getting me to clear the virus. Like he said with the response I've had my chances are real good right now..... So I've been off treatment for almost 4 weeks now and was feeling great until a few days ago.... Esophageal infection and ulcer are back and about three days ago my hair started coming out in clumps, worse than when I was on treatment......................??? Don't get it, off treatment yet still sick......again doc just says I am a mystery, wish someone could come up with an answer. Bev, I feel ya, the medical community is so quick just to brush us off and say nothing to worry about but then we find out later that it really isn't all in our heads!! i've been telling pople for years " I swear I'm not mental!!" -
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Re: Need advice my friends...
Tue, May 30, 2006 - 10:29 AMTiffany,
It's definitely not in your head but Hep-C and it's treatments often work (or not) in strange ways. After being quite ill and "flunking" two 24-month treatments in four years, I'm suddenly healthy as a horse. A horse that happens to have HCV. Many are cured and many just adapt. Don't give up hope!
Stan -
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Re: Need advice my friends...
Tue, May 30, 2006 - 7:10 PMBy the way Tracey and Bev, Stan's the Man....
Tiffany, the fighter in you, she is an amazon. Treatment, no treatment, she'll get you through whatever treatments, sides, research projects, dealing with doctors, losing hair, whatever.
A friend of mine who got really sick, she thought it was an ulcer and ended up stopping at 4 months, had her hair fall out in chunks after she finished. I guess it is because the medicine is so long lasting in the system. It must suck though.
Someone tricked me one time and taught me something that has worked well for me. I was trying to decide something very difficult and I was so conflicted and really didn't know what to do, and this guy looked at me and said, what do you want to do, right this second, if you had to decide right this second, what is the answer, NOW. The answer was the 'right' one and I've learned about myself that I usually have the answer, I'm just afraid of it or want other people's approval for it.
I'm sending you hugs.
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