Hi Diva, I would very much like to correspond with you as our husbands are going through treatment and I feel you have a lot of support to offer at this time.Maybe Lost1 you could give me some support as well. Is there any other way that you and I could communicate through email as well as this message board. I have been asked what type of treatment, I really thought there was only one kind, he is starting the shots every friday and then pills through the day, 3 months will be monitored and hopefully continue for the year, which will mean that it may be working. My husband, I am noticing is very nervous about it all and I tell him about reading your stories and sides and it is helping, thank you for this Lost1 and Diva. How about a good vitamins program to help with fatigue if any sides like this comes up. What about a mega B complex to help as an energy boost.I am noticing you are saying lots of water has been making a difference as well. I feel alone in this to some extent as no one in our family knows and it has been kept very private at his request and I need to respect this but on the other hand I need some kind of support through out all of it.Thanks again to both of you.

Faith-

Howdy- I for one, as there are many here, Wes, JJ Dragonslayer, MJ, Sean, DD, Jeannie Ree, Rare cuts, Tadpole, Diane- just to mention a few off the top of my head,that I know here that are outstanding in offering support.
I [and I am sure DD]will be here for your support and info,anyway I can personally help, is yours for the asking.

The only way I know, that you may get our e-mails is though Thanbeys HCV site, www.hcop.org (http://www.hcop.org) she is the only one that has most of our e-mail addresses, as it is against the rules of this fine site to give out e-mail addresses, which also if you have not been to Thanbeys site, it also is a fine site with lots of info.

The treatment I am taking is Pegasys/Ribavirin, there are others such as Peg-intron that is popular right now, because of its advancments.

I personally think fresh clean water, [about a half gallons worth a day], fresh air, and high Positivity are the most inexpensive, important and helpful medicines out there.

I do take 1000 mgs of Vit C, Vit E, and a "mega Vit B complex", nothing else but the occaional Tylenol,but do not take medications, supplements or Vitamines just because someone else is, talk to a Doc, whats good for me, might harm you.

I hope that I can help out in any way, hope your adventure is a good one.
Be Positive and be Well Faith-

Neil+



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--Get Outdoors-Enjoy Life----Neil

You are definately NOT alone here, Peg_faith! We are all family, here. Some of my family and co-workers know about my Hep C -- but most do not. My sister-in-law thinks she is an expert on the subject (but actually knows nothing about it, bless her heart!) ... so I don't get a chance to talk about it with anyone else who has it ..... except for here, mostly. Quite frankly, even those who know, I don't want to bore with the details. It is really only most important to those of us who have this ... so thank GOD for this site. This site has some really wonderful people. Welcome to the family!

DirtDiva and Neil Lost1) are fantastic for following those on treatments. Boy, if ever you need your soul and spirits lifted, these two can do it! I'm not on treatments nor sick at this time, but if I were, I would be sticking to those two especially like glue. Guess you already figured that one out, huh?

God bless you and your husband. No matter where our topics take us or what stage of the disease or treatments we are in, you will be "home" here. I honestly don't know what sanity I would have today if it weren't for this terrific group!!

Thank you ... and welcome .... even though we are sorry the diagnosis has brought you to this site.

Keep your spirits and attitude HIGH!

Diane

Hi Peg,

Sorry it's taken so long to respond, kids are off this week for Spring Break...don't know if I should be happy about no homework or exasperated because they are bored already....hrrrmpppphhh!!

I'm sorry (and a little p-o'ed about it) but I can't give you my email address as it's "against the board rules" as much as I want to help you, my hands are tied. This board has been a Godsend to me and I don't want to get kicked off. I also use some of the other "titles" like Allergies for answers. I'd hate to lose the friends I've made here. I hope you understand that it isn't me.

I surely want to reach out to you and your husband because like you said, we have A LOT in common. You can post here anytime and I'll answer.

Sounds like your husband is going through the same thing mine went through and you're going through the same I went through with him. Gerry was very, very nervous about treatment. It's all fine and dandy when the doctors tell you about it and say "go for it" but then you get home start researching and go "WHOA, what the Sam-Hill is this doctor trying to do to me?"

You've obviously had the sit-down and talked it over and made the decision since you said he's starting the 25th, right? By this I mean...you decided this was the best course of action for you, correct? We talked and talked and talked it all out for months....can anyone say procastination?.....teeeheee...

Gerry was (luckily) at a point where he could or could not do treatment. We talked(weighed the options) and he decided this was something he must do for himself, for me and for our family. I can tell you all the reasons but these are reasons YOU and HUBBY need to decide for yourselves. I hope that makes sense.

Mostly importantly....feel strong and good about your decision. It wasn't easy to come up with this, it took months but when Gerry finally decided, it was a strong decision. I belive that if you think "Oh, I'll do it because...."doctor wants me to" or "someone said I should" or any other reason other than yourself...then maybe you need to sit down some more and decide why YOU want to do this. After all 3 months down the line you don't want to say "I feel horrible, and it wasn't even my decision" I think you're more apt to stick with it if you decided for yourself.

You're only a week away from shot #1...well,guess what? Hubby was STILL nervous 1 week before. We ran into some obstacles with the insurance and that gave the perfect excuse to put it off another week....$1500.00 was a lot of money to fork out BUT..if it was one of his damn boat parts, bet your bottom dollar it would have been bought in a heartbeat. BUT...I knew it for what it was--nervousness---so instead of turning into a raving lunatic (I do that really well--Neil, don't you say a word!), I let it go. See these are the things I'VE had to change...support is important to your hubby right now...girl, grit your teeth and let him have his way, it's a short period of time and have him sign an IOU for when he's done with treatment.. I'll get my cruise yet....teeeheee!

Gerry never, ever shops---he went with me to pick up the Peg-Intron/Rebetrol at Target. He had me write the check, I think he was too nervous to write it. He didn't even want to LOOK at it. Like I said I carried it home, IN MY LAP, like it was the Hope Diamond or something. I must have placed the bag 10 different spots before I found a place, would have put it in the safe if it was big enough....teeeheee!

Our nurse said she would help us with the shot on Friday afternoon. Gerry worked all day and unbeknownst to me, he was a NERVOUS WRECK all day. He was so nervous he almost passed out after she gave him the shot. When he got home he said he couldn't belive he was so nervous. This from a man whose one of those he-man-I-tough, I can do anything, I-man-hear-me-roar types. Tell your husband don't ever, ever feel like he's a whimp because he's nervous, this is a big step....don't let anyone tell you it's nothing(we heard this from someone who didn't know diddly about treatment), it isn't nothing...this is BIG.

OK, enough of the pycho babble (teeeheee!)

As far as the question about which treatment. It might very well be up to your doctor AND/OR your insurance. Our doctor did not know enough about Pegasys to explain to us why that would be better. We got in there just SO sure we would use Pegasys, because of Neil's story and another board I visit. Doc was not 100% sold on Pegasys and we weren't either when we found out we could not change the dosage. Pegasys supposedly has less sides but then I've read the sides may hit you later versus the Peg-Intron that hits you NOW. We hem-hawed around so doc finally said

"I'll make the decision since we can't all agree---I'm giving you Peg-Intron and the reason why is because Peg-Intron has been out awhile where Pegasys has been out a short while, any drug that's been out awhile will have MORE side effects as it's been used by the public more"

He went on to say that there are updates everyday for drugs. The more information they gather the more warnings, sides, etc., gets put into the books. Make sense? I hope it is, it did when he explained it hence our decision on Peg-Intron instead.

Oh another thing....it's very important that you have faith in your doctor. I can NOT imagine going through this and not having a good rapport with your doctor. He's going to like...become your new best friend. I have the office girls from H-E-double hockeysticks but love the doctor. Preferably a younger doctor or at least an older one that's up-to-date on things. My husband was passed up for years by an old-fashioned, I do things my way and don't need conferences kind of doctor. He had Hubby believing he didn't even have HepC anymore but another thing HE discovered like HepC.

Insurance is another matter. Ours didn't matter as our insurance sucks. Same amount for either drug. I hear (and don't quote me--just heard) that some insurance companies will not cover Pegasys since it's so new. Take matters into your own hands and YOU call your insurance company about it. You may not have to decide, your lovely insurance company will decide for you...aren't they sweet...who's bitter, who me?!

As far as vitamins are concerned, I think Neil answered your question. Gerry is so against taking anything right now because I looked up plenty about his Milk Thistle and since no one can give a DEFINATE answer he decided to not take anything until after treatment. See here's another point where I would turn into a you-know-what and tell him to take some vitamins but it's his decision. Also, his liver is not in that bad condition. He's decided if he gets anymore tired we WILL talk to doctor about vitamins again before trying any other blood-helper (Procrit and Neupogen)...Gerry just thinks less is better for the liver. When we first asked about diet or vitamins the doctor didn't really have a good answer if he should or not.

Water, Water, then more water. Water is important anyways to everyone. I can NOT say for sure if it helps but so far so good...is it far-fetched? I don't know but Gerry said he's not willing to try NOT taking the water. We're lucky enough to have reverse-osmosis at our house so it's filtered 4 times. We don't need the Bullcrap they put in the water, we need it filtered as we have well-water and sometime it comes out brown (lovely,huh?) either that or smells like chlorine, ugggghhh! At work he has Arrowhead bottled water. I buy a case of water (look for sales) bottles and he uses one every other day...uses a marking pen to measure. Gerry is 6'4" about 185lbs so he needs to drink 1 gallon per day which amounts to about 9 small bottles per day, so he marks 9 lines before 6pm. I found the formula for water amount, can't give you the website but look for dieting sites and other hepatitis sites.

He also gave up coffee, chocolate (although I did buy him some M&M's the first week but limited him) and caffeine soda. I buy bananas(1 medium), cantaloupe(1 cup) and Tropicana orange juice(1 cup) which he eats one of those per day for natural potassium. He's able to drink orange juice, lemondade, apple juice and Tang for meals or in-between...just in case your hubby gets sick of water.

Hubby takes injections on Friday nights. We decided we can give up weekends but he wants to continue to work so Friday was the best day. Saturdays are the roughest days, Sunday is a little better. Monday is still a little foggy but he hasn't missed work. Tuesday is a little better. The pills are taken twice per day. He said he gets a kind of "fog-rush" about 1 hour after taking it for about an hour. The night pills aren't as noticeable since he's home.

Keeping positive and staying active are important things to. Gerry is a very active person to begin with, he's had to stay active in order to keep himself from "thinking" about everything. I believe that staying busy has really helped him to keep his mind off of being sick. Make sense? It's like, if you're sick and you stay home in bed...that's all you think about. But if you have to get up and do something before you know it, you've (kind of) forgotten about it. I hate to say it but sitting around feeling sorry for yourself can only make it worse. Gerry DOES sit down when he needs to especially 2 days after shot day. He's needed to do that more and more lately but in between that he's stayed very active---and mostly outdoor stuff.

About not telling others. I felt the same way you did...why make it a secret? Two things: 1. you have to respect his decision like you say and the other...I found that telling anyone outside the family is not a good idea, especially to those people that know nothing about treatment. When and if you decide to tell people...be ready with questions or concerns they have. Mostly stick to your guns.....you know what they say about opinions and a$$holes everyone has one...and believe me, everyone will tell you their opinions. Hope you saw some of my other posts about those "opinions." Gosh, nothing worse than someone looking down their noses at you when they know NOTHING about it. I think the worst was "Oh, you're going to die from that treatment." Bad, huh?

For family, I think it's important that they know what's going on...if you're a close family they will know anyhow....explain to them all the reasons why you decided on treatment ("I want to extend my life" usually works well...teeheee)and give them some facts about HepC (most people don't know)and some things about treatment. If they know what's going on, they will probably back down and support you.

I and others on this board will support you 100%, any decision you make. There's some really good people on these boards and a lot that are very knowledgable. I'm ignorant about lots of things since I'm just starting. Ignorance is not a crime, I just don't know all the facts but I'm learning. Remember what might be good for one person, may not be good for your husband.

I know I've written a book and you're probably cross-eyed by now but wanted to cover all the bases. Can you give me some info about your husband (your choice if you want) like: What Genotype? Background? Liver biopsy yet? Viral load?

Keep the faith, stay positive and visit often!
Susan

Hi Diane,

Well, gee (blushing here) didn't know you had so much faith in me? Thanks for the vote!

You're right...it's a great group here and I can't tell everyone enough how much this site has meant to me and Hubby. I'm like a woman possessed in the mornings to get on here.

Now everyday Gerry asks me, "what's the new news".....Neil kinda gets behind in his posts (ahem) and I sit on pins and needles waiting. But I'm patient, yes I am.

I'd love to see more 6mo/12mo results and "after-treatment" stories posts!

Thanks for the kind words!
DD

Meant every word I said, DirtDiva! You are not only a fantastic writer, a great help to those of us on treatments, but an inspiration all-way around to teach us exactly what a loving relationship is all about!

My husband and I are still very much in love after nearly 19 years together -- be us all so lucky to have such wonderful support from our spouses as you share with your's!

I know what you mean about the "woman possessed" to get online here. Look at me -- I work from 8 till about 6 or so each night ... and you'll still see my posts at 2 am in the morning! tee hee!

Wishing you both 100% success, as you have been going!!!!

Keep the spirits and attitude HIGH!

Diane