news item

[mycoldfeet]

I read that Pamala Anderson stated she has the Hep C virus but would fight it using holistic healing. I wonder if the virus believes in it, I hope that celibrities like her do not sway people from getting the tx they need by listening to that kind of garbage. Does anyone out there belive she hasnt got a high priced private Dr. for tx in between her "holistic healing" sessions. If she hadnt come out and stated it in the paper I wouldnt mention it, but there is a lot of scared people out there that take these celebrities too seriously.

[cmurphy]

Hi - there are comments to this article by Indiana and GI.PA under a 7/30/03 post titled "High ron levels".

[fullofhope]

Thank you everyone for your wonderful wishes...

My husband, Mom and I went to dinner last night to celebrate.  120 bucks - guess it is worth it!

I was thinking about things we could do to get the word out to everyone.  Not being in the limelight like a Pam Anderson or Naomi Judd - it is kinda hard to gain a HUGE audience - but what about stickers with some really "hard-hitting" statements about HEPC that we could put in every public bathroom - wherever we all go?  I am not sure if anyone would want to put them on their car, but if so that would be a great message for the drivers behind you in traffic (and we have a lot of that in the tri-state area).

I don't know - just getting the creative juices flowing.  I think I could get a couple hundred made for around 1-200 bucks at the place down the road from me.  We got some stickers done up for 9-11 and sold them to benefit the families of the WTC victoms.

Does that sound corny?  I mean we would really have to come up with some really good short phrases that get the message across...but I have a degree in graphic and commercial art - so that service is free.  I can also develop a web page that we could direct people to for information...and the development would be free...and there are a lot of free web hosting sites  out there that we could use - I could also put it on the hosting site I use for a very minimal amount a year.

Is anyone interested in getting something like this together?  It doesn't necessarily have to be these particular things - this is just my first shot at it.

[freehealthcareforall]

Pamela Anderson is the only celebrity I know that came out in public and admitted to having a blood bourne virus.I can remember the 80's and another blood bourne virus being around and the discrimination that affected those people is just the same today as it was 20 years ago.How long did it take freddy mercury to say he had AIDS?
I take my hat off to Ms Anderson I can only hope others like her lift the lid too.What about the really old one in the rolling stones he had a complete blood transfusion a few years ago.What was that about?
Let them come out and let's all make this an issue worth becoming a cause.I am trying to become involved in bringing this to fore in peoples mentality as happened with AIDS/HIV,unfortunately hep C just isn't sexy enough,despite it being the killer of 4 times as many people.

Lets stop slagging and do something that may empower us more,Pamela Anderson has helped me by openly saying she has this too,how she copes with it is just as individual to her as it should be.
I don't have the choice, Chinese medicine and herbs are all I've got,paracetomol is out so why not? She's got nice **** too!

[fullofhope]

Well...you must have or be suffering alot cause you have been a savior...

If I don't report tonight - I will definatly do so tomorrow.

[oldhippiechick67]

So very happy for you!!  Great news, now go get pregnant!! And ya dont need to pay us back, you've been interesting to talk with and I enjoyed getting to know you!  Happy Trails to Ya!  OHC67

[fullofhope]

I am sorry about the double post.  I hit "back" a few times and then hit "refresh" or something by accident.

[fullofhope]

This has been so anti-climatic for me - not that I wanted the results to be bad - but the fear that I went into this with was unbelievable.  My Mom came to pick me up from work to go to the appointment and all she kept talking about was my crazy aunt (I know she was doing it because she was nervous too so I let her go on) and all I wanted to do was tell her to shut the hell up.

I guess this could be a reason for everyone out there waiting for results that there is hope...it could go in your favor - it isn't always the worst case scenario.

I want to thank everyone here for the support - if it wasn't for this board - I would have lost it (especially you Mike - if you are ever up to it - I want to take you out to dinner).  I am not going anywhere either...I am going to do what I can to repay this massive debt I have to all of you.  I will be here daily and do what I can to help.

I am on a mission guys...I have to do something and get people aware of this - educate people - help people understand that we need more funds to do research and find better drugs.  Just because I am ok now - doesn't mean I can't be right back where I was 2 hours ago in the future.  I can't let the awareness and knowledge I have gained about this virus be brushed under the rug like it doesn't exist.

Right now - I need food and sleep.  But - tomorrow is another day and I now have a purpose.  Thanks again everyone - for everything.

[odessit]

I dunno if you read this...

Hepatitis C Virus Drug Pegintron (Peginterferon Alfa-2b) Should To Be Given Twice Weekly

VIENNA, AUSTRIA -- July 29, 2003 -- A study published in the July issue of the Journal of Viral Hepatitis(1) shows that the currently prescribed once weekly dosing schedule of peginterferon alfa-2b (PegIntron

[fullofhope]

This has been so anti-climatic for me - not that I wanted the results to be bad - but the fear that I went into this with was unbelievable.  My Mom came to pick me up from work to go to the appointment and all she kept talking about was my crazy aunt (I know she was doing it because she was nervous too so I let her go on) and all I wanted to do was tell her to shut the hell up.

I guess this could be a reason for everyone out there waiting for results that there is hope...it could go in your favor - it isn't always the worst case scenario.

I want to thank everyone here for the support - if it wasn't for this board - I would have lost it (especially you Mike - if you are ever up to it - I want to take you out to dinner).  I am not going anywhere either...I am going to do what I can to repay this massive debt I have to all of you.  I will be here daily and do what I can to help.

I am on a mission guys...I have to do something and get people aware of this - educate people - help people understand that we need more funds to do research and find better drugs.  Just because I am ok now - doesn't mean I can't be right back where I was 2 hours ago in the future.  I can't let the awareness and knowledge I have gained about this virus be brushed under the rug like it doesn't exist.

Right now - I need food and sleep.  But - tomorrow is another day and I now have a purpose.  Thanks again everyone - for everything.

[TESSTUBE]

Excellent news.   Sometimes our prayers are answered.

[mikesimon]

That is the best news I have seen in a long time on this board. I have nice enzymes but yours are truly beautiful. When I said to relax I never dreamed it would be this easy. Congratulations. Just do as the doctor said and keep an eye on things. I think you are in real good shape and, honestly, I envy you just a tad. Simply wonderful. Mike

[fullofhope]

Hello everyone...I have good news.  I have either had HEPC and cleared previously or I am testing a false positive.

Here are my results...

ALT : 10
AST : 14
HCV AB, RIVA : indeterminate
HAV AB, TOTAL W/(IGM) RFX HAV AB, TOTAL : NEGATIVE
HB CORE AB, TOTAL : NEGATIVE

HCV RNA, QN, REAL TIME PCR
HCV RNA IU/ML <50
HCV RNA, QN, PCR <1.70

The doctor told me that aside from getting tested every three months for the next year to absolutely rule out current infection that I should put this behind me and go on with IVF treatment.

Do my results indicate this to you mikesimon?  I don't know what these mean in terms of anything.  I am still in shock...I just want to go to sleep.

[MajNeni]

Happy evening, Fullofhope; you see, there is a good reason for your nickname.  Good luck with the IVF.  
I know someone here who recently adopted a child from Hungary; there seem to be others available there and in Eastern Europe.  The boy was almost two when they got him and a tad small for his age; he's adorable and perfectly normal, including catching up in size; they hope to go back and get a baby girl to add to the family.  There are also adoptable babies of other ethnicities in other countries, for example girl babies from China (where parents prefer sons).  Stay Full-Of-Hope.  
Hope your crazy aunt turns out ok, too.
Congratulations.  What a life lesson!
Maj Neni

[mikesimon]

I'm right here sitting at my office pondering the relative arguments for 1) working or 2)playing online poker. Poker has got the upper hand so far. I live near Pittsburgh. I know quite a few people that would love to have their own mikesimon but their intentions would not be at all wholesome for me. But the thought is sweet and I thank you for the kind words. I think we all feel the same way here. That if we are fortunate enough to help even one person the real beneficiary is the giver. That's one of the wonderful things about this disease. They say it takes suffering to yield compassion. I'm glad you're feeling better. Mike

[fullofhope]

Mike - where are you?  I want to give you a huge hug!  We need to get your DNA, farm a bunch of clones and distribute them so everyone here can have their own personal mikesimon with them at all times.

[mikesimon]

I've been there myself. I did take wellbutrin for a couple of weeks, maybe 4, but then I felt okay and stopped. It seemed to make me want to smoke though it is supposed to do just the oposite. Anyway, what can the doctor say that you haven't already imagined him saying? If your load is high that ain't great news but it won't preclude tx. If your alt is high that's not unusual and doesn't say a lot about the condition of your liver. I think you've got to look at this whole thing like an emotional bank account. You only have so much money there. You will likely have a biopsy. That will be another waiting game- first the testitself and then the results. Then you may start tx. The anticipation of sides and the fear of starting. Then it's the 12 week test and the 24 week test and so and on. So the point is that you are just getting started on this horribly stressful waiting aand anticipation game and you have got to try to keep emotional reserves on hand. Don't blow it on this visit. If ADs can help you that's fine. Many people use them and they can help tremendously. But in the meantime try to calm yourself and stay in the present. That's really all we have anyway. Mike

[fullofhope]

I will - don't worry.  I will surely be looking for help with understanding the results.

I think I need to be on some of anti-Depressants - or panic meds.  I just got the most unbelievable wave of panic...It is 10:35 here and I have a 2:30 appointment.  I can't handle this. I wish I had not come to work today - and I also have to come back afterwards.  I have been trying to keep my normal schedule so that if I need to do TX and need to take days I have them.

[mikesimon]

You're very welcome. Please post the results of your meeting if you don't mind sharing. I'll be looking for you. Mike

[fullofhope]

Thanks for your repsponses and comments...as always - you are a great stress relieving tool...

[mikesimon]

The blood brain barrier thing and the theory that this may account for or at least contribute to cognitive impairment does not mean that you will be unable to function. The research has revealed a subclinical neurophysiological impairment. Short and long term memory are not affected. If I recall right it may have been evidenced in attention span tests. At any rate the study I saw said that this impairment resolved with tx. I think it took 4 weeks. Some of these facts may be off a bit but, believe me, I do know that the impairment was not severe and that it should not preclude you from working. Most of us have had this virus for a long time and worked productively throughout. I had it and went to law school and practiced law and ran a company. Now some may argue that I could have done better but I did okay. So relax and you will be fine. Good luck again. Mike

[fullofhope]

Thanks.  I hope you are right.  As long as I keep busy I am ok. We had an issue with one of our web page forms not displaying a variable correctly - so that took a little time investigating (wound up being a mispelled variable in the code) and after it was fixed I realized I didn't think about this at all...of course then reality rushed back.

I am so worried about that blood-brain thing now.  My day-job and my business rely heavily on my brain power and clear thinking - if that goes ... it all goes.

I guess it is a good thing I like working outdoors and gardening - If everything else goes down the tubes maybe I could start my own lawn care business and hire only women who will wear barely there clothing while cutting grass, trimming hedges and mulching.  I am sure that would attract attention and money (from single men anyway).

[mikesimon]

I very much doubt that the change was owing to any urgency in your treatment. It was in all likelihood a matter of convenience for the office. Try to relax a little. I know the mind plays these games and I know it is hard to stop it at times like these. But do try. I think getting acclimated to the stress of waiting is central to dealing with this disease while maintaining a modicum of sanity. You'll be fine. Good luck. Mike

[fullofhope]

Ok - didn't want to take up a new thread - but had to get my feelings out.  I am sitting here at work watching the clock and I only just got here.  I think I looked about 5 times already - that is once a minute.  I have my "viral load" and "alt" meeting with my doctor today.  It was originally for Friday, but I called him (in my newly developed psycho manner) and requested that if he had the results - that he call me and give them to me - that I couldn't take the wait anymore.  They called yesterday and said they wanted to put a new patient in the hour slot on Friday - and asked if I could come in today.

I am just really nervous right now.  I was grateful for the change in the appointment - but then my worry-wart mentality took over - "Is it that bad that they moved everyone around for me?" "No - maybe they were just being nice cause they knew I was stressing" "Or maybe he never saw results like that in his life and needs to get me on meds now...or on a transplant list - I could have had this for 30 years".

Anyway - I know all of you know what the brain does during times like this - I am trying to make myself laugh about how ridiculous I sound - but it AIN'T WORKIN'.  I know I will be on this forum until the minute I have to leave for the appointment - and of course "working".  AAHHHHHHH - My last really stressful moment was waiting for the + sign (which never happened) on the pregnancy test.  Now...if I ever thought waiting for that stupid pregnancy test to turn took forever and was stressful - this beats it a billion-trillion-gazillion times over.  Amazing how fast things come into perspective after finding something like this out huh?  I mean - the week before this I was starting to worry about giving myself IVF shots for 3-4 weeks...now I am facing a years worth of shots and drugs and feeling sick.

Hmmmm...guess I am learning exactly what the "small stuff" is - and what not to "sweat".

[fullofhope]

Thanks for telling me about why you didn't get on TX right away...I am learning everyday.  I appreciate your responses - everyone.