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A humble request of all the SVR's in the crowd

I am just about to start my tx, am am seeking info from the SVR's out there.
Did you fortunate souls follow any special diet? Exercise?
I do know that lots of water is important.
Thanks in advance, I appreciate you help.
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Avatar universal
How badly do you want a chance @SVR?  I traveled over 300m round trip, over the Cascade Mts to get the proper and informed care.  I cl'ed @3wks, fin 24wks, SVR 15+mo.

The best advice I can give is make yourself comfortable, drop as much as you can, adopt a diet and vit/sup plan ypu are comfortable w/ and try to elimate as much work for your liver as possible.  Your liver's work is to elimate toxins, so elimate as much toxins-inc stress and emotional upheaval-from your life so your liver doesn't have to eliminate the toxins.


kinda like, don't add insult to injury. Make it easy on your body.  Tx is just a stage.  Healing also has to take place and repair.  So good nutrition is important.  Use food as another healing tool.

I also think a visual mental image of the battle between the virus and the tx and the victorius outcome is an incredibly strong tool in helping your body help itself.
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Avatar universal
WAY TO GO CHRISTIE...!!!!

....i truely REFUSE to believe that her nurse is representive of nurses ANYWHERE ON THE PLANET....just about every nurse i have ever dealt with has been wonderful and caring, if not somewhat "overworked"...still kind, thoughtful and compassionate.....
kimmy
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Avatar universal
also....in DEFENSE of your nurse.....i must add, that there may be legal stuff she is concerned about they have huge amounts of responsibility....but sign the waiver and carry on....she probably just got really scared and went off.....its easy to do!
hey.....maybe SHE is menopausal....its all going to be okay...there really will NOT be much difference, i FORGOT..orMISSED my first blood work, because the clinic here only does blood work mon and wed....between 7am and 9:30am...if you miss that appointment....your screwed...well...i started treatment on a monday, but MISSED the bloodwork , BEFORE i started treatment.., so my nurse said NOT TO WORRY...NO BIGGIE..just to go in on the wed. morn, WHICH i did and all has been well since.....ALSO i doubt very much that ANYONE doctor would remove you from treatment for that!!!!!!!...yah...like that'd make SENSE....

hugs!
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Avatar universal
I'm undetectable 12 weeks post-tx so the odds are on my side.  I don't think there's anything that you can do to make the drugs work better.  If you ask enough you'll get a long list of vitamins and elixers but I think they're worthless.  More riba is absorbed if you have fat in your stomach so that's why they advise taking it with meals.  I guess it's soluable in fat.  But that doesn't mean that more of either drug is better becuse you worsen the sx without improving efficacy.  I think there's about a 20% chance that the sx will get so bad that tx has to be canceled or reduced.  The big risks are very low red or white blood cell count, craziness, heart symptoms or such discomfort that you can't stand it.  Make the dr watch you closely so he can deal with these early.  You'll need an antidepressant and maybe Procrit and Neupogen.  My dr advised exercise but I was too beaten down to do any.  The water intake sort of takes care of itself because the drugs dry you out so badly.  There's a lot of experience on this board so don't hesitate to ask what we think.  LOL
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Avatar universal
Your GI practice seem too crowded.  February is too long too wait.  I had training one on one by the assistant, and even then she was not accurate, I found out later. Start looking for another dr., just in case. I did. I changed within a month of tx. You really don't need that kind of "support" from your provider. the added stress of an imcompetent or too busy practice
is not what you need during tx.  Stand your ground, your life is more important to you than to them.  I don't remember signing a waiver.  This practice seems more concerned with litigation than with providing the best service. The blood work IS important, but you are right there is a range they go by to gage changes.  They might want to see Your normal, before tx, but like ring said, no big deal. Start looking for a less stressful provider, just in case.   Hang in there, we feel powerless, because we need them for the Rx, but there are others to choose from.

GL
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Avatar universal
To me the most important thing is to keep your eye on the Goal! I also made sure I had 3 or 4 small meals a day. I had meat and veggies, and my ice cream:)I took walks when I could, hopefully once a day. When I felt really bad I just sat down and rode it out. You will have good and bad days, enjoy the good ones! Good luck!
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Avatar universal
CUTEUS...ABSOLUTELY!!!!...i hadn't even THOUGHT of that angle....SO RIGHT....no one needs that added anger and stress from their health care providers.....i did NOT have to sign anything either, and the office thingy was GREAT...just me and the nurse,(and a friend that came with me) we joked about it all and kept it very light...no biggie....the injection part and the demonstration, took a total of 1 minute.....boom! inject....DONE....also, her continued suport is WONDERFUL and she is a hoot...very funny and very informed and ALWAYS there to answer anything i need!!!sure does make ALL the difference in the world....AS WELL AS YOU GUYS HERE!!!

WANT2LIVE....you'll be fine honey, lots and lots of water...IF you remember...i rarely do!..opps....eat all the chocolate you CAN....drink copeus amounts of coffee....have as much sex as you can....stay up really really late....sleep in EVERY DAY..stay in the same P.J.s for days on end..shoot anything that moves beneath your feet...get as much exercise of the forearms from typing here, or changing channels as you can...the work out may be rather exhausting, but well worth it in the end as you will stay conditioned..oh yah...occassionally remember to eat the odd steak, fish, or other meat and potatoes kinda thingy.....and ALWAYS WASH YOUR FEET!!!!...

seriously, common sense and a healthy diet...whatever that is, is what we can aim for i think....and take meds on time same time every week...cheers
kimmy
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Avatar universal
I am 12 week post treatment and the virus is undetectable.
I did something I wish that you can consider. You see, when you
have hepc you can infect other people if they use your tooth-brush or your razors. So while I was on treatment I was trying
not to re-infect myself. I did not use a razor more than once and also I changed my tooth-brush every week. I also changed my
hair brush every month. I might be crazy but it gave me a lot of peace of mind.
I also made sure to take my midicine on a regular time. So the ribavirine at 9:00 am and 9:00 pm every day. The peg-intron shot was taken at 10:00 pm every thursday. I tried my best to make these times sharp so the concentration of the drug in my body is uniform and homogeneuos.
Good luck
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Avatar universal
WHAT!!!!.......i have NEVER heard of re-infecting yourself...SERIOUSLY is that based on fact???....if so, i need a whack of toothbrushes i guess, cause the piddly little one i've been using is almost ready to "walk" away....i agree, never SHARE toothbrshes or razors, but i ALWAYS re-use my razors till they are brutally rusted....but whats up with the hairbrush thingy???...i usually wash mine out every week, but thats as far as i go with that....why new ones?...sorry if these sound like dumb questions, its just that i have never heard of this before so maybe i need to read some new info...
thanks!
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Avatar universal
opps...i should expand on that....i have NEVER heard of re-infecting oneself with your own toothbrush....or razor or hairbrush...please don't get mad at me or think me rude...i seriously am curious about this slant of yours and do others share this belief as well...????
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Avatar universal
Sorry to hear you got the witchy kind of nurse, and yes she may be po'd cuz you dont have your pre tx labs done, but they can still tell if its too low or whatever, and because you took the shot already, the platelets, rbcs and wbcs can be very much changed.  Did they ever draw blood on you before this/recently?
if so they can refer to that.  Are you on a clinical study/trial?  Is it free, is that why you are worried about being withdrawn?  if so, I can understand your worry.  Yes they can pre-date the waiver, it isnt legal but who cares, lol, no one will know except you and her (and us! hahaha). I had no idea she would be so upset, did you tell her you watched the Pegasys video?  That should be enough as far as training you.!!
I wouldnt want to stop tx either!  I hope this all blows over for you and you can keep taking your meds.  Its a shame that she was TOO BUSY to call you back, but maybe they wont pay her overtime and she had to leave it go...who knows, but that still wasnt fair to you!  My neutrofils (absolute ANC 0.6 or 600)took a huge nosedive after my first shot, but he didnt order Neupogen, just watched um, and the next week they went up to 1.0 then 0.8 then 1.3...blah blah, up down etc) My rbc's werent below normal but my wbcs were a bit.  Well I dont know why I am telling you except you can maybe understand why she freaked as they maybe dont have a "baseline" to compare it with now...
Hope it all gets cleared up!  OHC
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Avatar universal
Want2Live ...  I'm not yet SVR but hope to be one day (I'm 11/48 and a 1B).  However, I think drinking the water does help with the sx as well as help you to feel better.  If you let yourself get dehydrated (and often times you don't realize it), you will get tired even more easily and everything will be an even bigger effort to get done.  And I eat a pretty healthy diet which is good for me anyway.  My GI PA suggested I take a multivitamin along with 800 IU's of Vitamin E daily.

Ringading ... asked my GI PA about the toothbrush changing and she just said to change it every couple months like you would do normally.  As for the razor, I can't remember the last time I actually cut myself shaving but, if I did, I would probably just throw out the old and put a new razor in.  If you want to change your toothbrush, razors, brushes, etc weekly, do it.  The cost is minimal in comparison to the cost for this tx.

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Avatar universal
That is fine. But the idea is as follows: suppose I use
my toothbrush this week while I am on treatment and there is
a bleeding in my mouth so the brush would get infected, right?
Now as far as I know the virus can live on the brush for almost
two week and would be able to infect somebody else. I am on the therapy and my viral load is going down by the medication and it could get down hopefully to zero. Suppose that happens at that very week I am talking about, there is now a real possiblity of re-infecting myself.
You can apply the same concern on the other things. And the tooth brushes are not that expensive and it will not cost more than few dollars every week.
I know I might be over-reacting but that was what I did and as I said it gave me a lot of peace.
I wish you all the best.
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Avatar universal
Want2live - just be as compliant as you can about taking your riba and shot, I am not as precise as Dirac, but I dont miss doses very often...maybe forgot um once.  I take um between 8 and 11 AM  and the second dose at between 8 and 11 PM.  Usually I have some food in my stomach, but doesnt seem to matter.  I am lucky I guess.  I take my shot sometime on SAT anywhere from 11 AM until 6 PM, I am UNDETECTED so far !!! YEA!!!!  I drink the full gallon of water plus some, drink one cuppa coffee per day one juice and a couple caffeine free sodas.  The water they say helps with the sides, keepin um under control.  I always thought POSITIVE, that I will beat this, that it is going to work!  positive attitude is very very advantageous for a good outcome of any disease.
As far as new toothbrushes and razors, reinfecting yourself, bah humbug LOL, I figure we have enuf riba and pegasys/pegIntron rampaging thru our bodies to kill off any lurking viruses that may embed themselves in our toothbrush or razor!  I change my toothbrush once every two months, just cuz I am a tightwad!  I would probably change just for good hygiene every month (but I use the $8 Braun automatic kind.  You can soak your toothbrush every week if you want in peroxide and that will kill any germs lurking, same with your razor if you are concerned, soak in that or bleach soln (half bleach half water for toothbrush, straight bleach if you want for the razor.)  I think your changes of clearing are pretty good if you follow the common sense approach, follow drs orders and get rest!  The less stress and strain you put on your body the better the chances of being able to kill the dragon.  Much luck and positive vibes to you!  OHC
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Avatar universal
Want2Live.....Beyond taking the normal multivitamin to help fight off the effects of the lack of appetite and anemia, I also took Folic Acid(400mcg 3 times a day)to help strengthen the liver and antioxidents(vitamin E, C, and green tea) to help in lots of ways. I think it all helped me. Taking your Riba with food can help keep it in your system longer and so keep those levels higher. Then just be SURE to take your meds ON TIME and do NOT forget to take them. Get yourself a "pill-minder" thingy and fill it up once a week so you don't "Fog-Out" about it.
Befuddled....I doubt they will take you off cuz of starting early. They should already have a baseline from all the tests you've already had. Surely you've already had a PCR, CBC and liver profile done within the last 6 months. That is good enough. Don't let them freak you out. THEY wrote the prescription in the first place. You called them and THEY did not respond. The rresponsibility here is on THEM. My GI was an idiot with Hcv and I basically ran much of my own tx with the help of my primary doc. It's not all that complicated. Did they give you refills on your meds? Just don't let yourself run out of meds now if they are screwing around with this. You may want to call your primary doc and/or line up another GI now just in case. You do NOT want to stop now. That would be a disaster.
Ringading....We had a BIG discussion about this reinfecting ourselves thingy awhile back. THEY say it MAY be possible. Kinda slim...but still who knows. If you wanta be SURE then change em. It all goes along with the question of "how long can Hcv live outside the body"? I changed my toothbrush like always..once a month. I did Not use a razor blade but would change it daily if I did. I alternated my hairbrush every week. If your into your nails just use those disposable emery boards instead of a carpenters file.
You say that we're supposed to have a LOT of sex on tx? Hahahaha Guess I blew that one. I was too weak to have sex at ALL. Even sex with myself was WAYY too much work for me. And whatcha doing for a man up there? You got one tied-up in the closet or something that you feed the varmints to? Or do you just bring em in at gunpoint to .....help you with your treatment? Then what do you do with em afterwards? Are you like a Black Widow and just bury em out back somewhere's afterwards? No Wonder you've got varmints hangin around! Still...I'm impressed that you can even muster up the energy. Keep UP the good work!
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Avatar universal
there is ABSOLUTELY NO RATIONAL for you to MISS this fridays injection, or your pills the rest of this week....just frikken do it!!! put a call into the doctor....NOT the nurse, and let him know......a disruption in treatment to pacify her is not worth it...F@@@ ** her......HEY I KNOW....LET ME CALL HER FOR YOU!!!!!....i am dead frikken serious about this....
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Avatar universal
just read your new post ...DO NOT DO AN EXTRA INJECTION....just continue with pills and injections same time on friday and go in on monday with the sign on....she is abusing her position and has no authority to do so.....LET ME CALL HER.......
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Avatar universal
ha ha...theres ALWAYS the sand truck guy...told you i had a crush on him.....then theres the ferrier....thats the guy that does my horses...shoes....he REALLY is a babe!!!...but yah okay inndy, yah busted me...its all just wishful thinking....but a girl can hope can't she??

okay, now as for the blood on toothbrushes etc.....it was my understanding as of last year, that the reason they had so much trouble developing any anti-viral for this was BECAUSE they couldn't seem to keep the virus alive long enough in the petrie dish....!!!!...hummm so going with that....i don't know, i do imagine it is ALWAYS best to error on the side of cation though, ...right you are...as who knows, there may come a time years from now we'll find out the creepy little virus..is AIR BORNE or something.....
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Avatar universal
no no sweeite pie...i mean WAIT and call the doctor....maybe on friday.....even tommorrow, before hes off for new years eve....you do NOT NEED HER PERMISSION....SIMPLY TELL HER YOU WISH FOR HIM HIM HIM TO RETURN THIS URGENT CALL.....NOT HER!!! SHE CAN NOT INTERFER WITH THAT!!!!!...take your damn meds..don't stop!!! got it girlie...your on the right track and all is well with the universe...except of course with your NURSE RATCHET
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Avatar universal
On behalf of nurses everywhere, I apologize that you had to meet up with one of my bitchy sisters....

The next time you get a face to face meeting with your doc, tell him/her exactly what Evil Nurse did and said to you, add in that you are not a child and in need of punishment, that you expect and deserve timely returns to your phone calls when dealing with medications like these.  Tell your doc that you may have to consider changing your physician group if something like this happens again.  And start looking for real, in the meantime, because there is no reason to take that kind of ****.

Seriously, I would make a few calls and go so far as to book an initial appt. somewhere else to discuss transferring care.  This "nurse" will be with you for the duration of your treatment, and I doubt she will improve with time.  You can switch docs while on tx, don't let anyone hold you hostage like that.  YOU ARE THE BOSS, NOT HER, NOT YOUR DOC, NOT ANYONE ELSE.  YOU ARE THE HEALTH CARE CONSUMER, AND IT IS YOUR INSURANCE MONEY THAT IS PAYING.  Stand up for yourself and don't let some catty ***** make you feel like ****.  

Go get 'em!!!!!!!!!!!!!!!!!!!!!!!!!
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Avatar universal
ah darlin.....DON'T WORRY.....she just being an anal retentive *****!!!!...its like you messed with her mantra or something and threw her off and now shes having a frikken panic attack!!!
SHE has a responsibility to YOU!!!...i understand that medical staff, espeacially nurses are SLAMMED with the burden of most all patients....BUT.....stand your ground...shes just penilizing you right now, like taking away "phone privledges" or something....now just get that scrawny butt of yours into the damn cornor and put on the DUNCH HAT and LET HER KNOW YOU DID YOUR "TIME OUT" ALREADY and to just get on with it......now, go to your doc to get a base line with the info for them that you've already begun treatment....it really IS NOT THAT BIG A DEAL as she is making it out to be......i was in THE SAME BOAT!!!!!......head up cutie!!!!!
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Avatar universal
I am sorry that you had a bad experience at the Doctor's. I am also sorry that you insisted on venting throughout this thread that I started.
I NEED INFORMATION. I don't need to wade throught your tyrade from the "nurse that hurt my feelings" and the ten paragraphs that come with it.
Please be considerate to others and rant on your own thread, or fire up AOL and get a chat buddy you can vent on.  

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Avatar universal
ah sorry you feel that way it really isn't meant to dis-miss your VERY IMPORTANT question...you have recieved 7 great response and will definately recieve more....sometimes this just seems to happen on threads.....just check the second colume and see which are directed at you, sometimes also, in other comments there will be an answer to your question as well.....yah i know its frustrating and scarey....your doing the right thing asking questions really, other than the answers that are here, ie...no booze, no drugs, lots of water, healthy food, good attitude, lots of laughter...and a wee bit of luck, there really isn't much else one can do....oh yah and the vitiams...everyone here will be with you all the way through your journey as much as is possible......
cheers
kimmy
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Avatar universal
I have to say, that there are limited threads available here. That is why people sometimes add their questions onto others.  Perhaps in your "important" case, this got out of hand.  

Most of us read every thread, every comment for just that reason.  To be sure that there isn't something we could offer or a new insight to be given.  

I didn't comment on your "important" thread, because you DID get several comments from SVRs with common sense advice.  The truth is that there is NOTHING magical that SVR's do or don't do.  You simply have to take your meds, take care of yourself, limit exposure to alcohol and nicotine, be careful of possibly hepatotoxic medications, drink plenty of fluids, work hard, play nice, and try to enjoy life and keep a positive attitude.  The chips will fall where they may, and you will get an SVR if it is meant to be.  If not, get right back in there and try again.  

Took my husband 2 tries at therapy to finally become an SVR.  Long struggle, and no magic or "thing" he did at all.  Just persistance and faith that it would some day happen.

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