Tips for Those Starting Treatment?

Haven't seen a thread lately about tips for getting through treatment.  Here are a few things which worked for me.  Other tips for surviving treatment??

1. Keep your eye on the PRIZE and never look back.
2. Lean on loving, supportive friends, family and this forum. (I wouldn't be this far without you guys)
3. Drink TONS of water. Makes a huge difference.
4. Take it easy on yourself. Get comfy clothes for around the house, go for walks (I like yoga classes), and spoil yourself with massages, etc. And the TV remote? It's YOURS.
5. I'm a woos when it comes to sides, so I tracked them carefully and worked with my GI to manage them.
6. Find a GI/Hepatologist who will work with you and cares.
7. Keep a folder with all your test results and med receipts. Comes in handy when your visiting other Drs or dealing with insurance companies.
8. Learn, learn, learn as much as you can and ask lots of questions. The more informed you are, the better you can manage.
9. Enjoy life. These meds can slow us down, but there are still plenty of things to enjoy.
10. Make a contact list including friends, Dr's, emergency #'s, etc. Very handy.
11. Get a humidifier.  
12. Keep a sense of HUMOR. Laughter works wonders.

Cheers,
Gail

[silverangel]

Thank you so-o much. It's very scary for me right now. I haven't had any side effects yet, and I feel like...well, like I'm just waiting. Do you know what I mean. I keep thinking...did I push the plunger all the way down? Is that why I'm not feeling anything yet? But I was at the Dr.'s office, and the nurse was watching me. But why don't I have sx? Did I mess up? So many thoughts, mixed emotions. I'll be alright just venting I guess. Actually, glad I started tx, so I can rid of the "monster".








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[dndfunnel]

WAY TO GO !! KEEP IT UP. NOT LONG TO GO NOW...

[Forseegood]

Wow, what really great advice, I think the worst thing about thinking about tx is that feeling of not having control (control freak that I am) that the meds are going to be the Master, "Bow to your Sensei" (for you who have seen Napoleon Dynamite.) But doing these things beforehand seem to give you guys the upper hand in dealing with these issues...to help give you a sense of normalcy in routine, till you get through it to finish line. Anyway thanks so much you guys for these tips, it gives me the feeling that it is indeed doable.

[louisep]

Diprobase (perscription) was my lifesaver for riba rash.
Stock up on baby oil for bathing.
Massage almond oil into scalp before washing hair (I left in overnight & washed in the morning)
If your not a huge water drinker, add 25% of clear juice (apple, grape, cranberry)
Keep ice cream in the freezer.  If you've lost your appetite, eat some ice cream before taking the riba.

[dndfunnel]

WOULD LIKE EVERYONE TO PRAY FOR THIS LADY ! JUST A MINUTE OF YOUR TIME . THANK'S GUY'S !



PS. CAROLYN DON'T KNOW YOU BUT YOU  (WILL) BE OK ! SENDING PRAYER'S YOUR WAY . HANG IN THERE ! DEANXX

[PasoPerson]

I am humbled this morning to see your prayer request on my behalf.  It truly touched me.  Thank you.

I have always spent much more of my time "giving" instead of "taking" and find it hard to request prayer for myself.  But you guys, this group, you are like family.  I care for you more than I can express.  And the fact you are taking time to whisper a prayer for me, hard to fathom but much appreciated.

Thank you Dean, and all you others who care for their cohorts in treatment.

God bless -
Carolyn

[NYgirl]

I thought perhaps I had done something wrong as well because I never got the FLU sides from my first shot.

In time you are bound to start getting side effects of some sort (ie: the rash, the ANEMIA, hair loss, weight loss).  THEN you can say oh good I'm in pain I know I did it right hahahaha!


Continue drinking lots of water.  That is the best thing to detox the meds and help you maintain the SX free feeling!

(MY doctor told me I was the first patient he EVER had who did not get the fever....I really thought perhaps I was doing it all WRONG until the anemia came CRASHING down on me.  I am SURE you did the shot just perfectly - hang in there and be happy about these results!)

[silverangel]

Wow, Good advice! I've copied and pasted the advice from all three threads! So I can come back to remind myself. Oh, and loved the one about 'time outs', yesterday, caught myself being really ugly to my 17yr son...and he's a excellent son. Timeout time for me.

I'm 50, and plan to keep working, and thats hard enough, when somedays I feel like I'm getting old, you know. So thinking about how tx will add to that, makes me nervous.

But all in all, I KNOW I have GOD. Deep down, I know I don't have sx because of HIM, I prayed not to, HE listens.

GOD BLESS ALL OF YOU TODAY AND ALWAYS...HE'S THE ONLY ONE IN CONTROL HERE.  :)

[NYgirl]

When you have GOD like you do...it makes treatment VERY VERY DOABLE.  I CONSTANTLY rely on him and repeat Psalm 37 "Commit everything you do to the Lord, trust Him to help you do it, and He will" over and over and over.

I am doing the leg work...and He will help me achieve SVR!

ATTITUDE is SO IMPORTANT.  Hang in there!

[dndfunnel]

I CAN DO THAT FOR YOU ! N THANX FOR PRAYER FOR PASOPERSON - SHOT 9 TONIGHT N NO SLEEP - MIDNIGHT HERE !YOU THINK YOUR LIST IS LONG ! I HAVE BEEN PRAYING FOR YOU ALL WEEK BOXHEAD XXXX .BUT HEY IT'S WORKED !!! G'DAY YIN YANG XXX .TLK 2 YOU GUY'S BACK HOME AT BF'S (BEAUTIFUL FEMALE'S) DEANO XXXXXXX



CAROLYN-POSITIVE THOUGHT'S !!!!!!

[dndfunnel]

A FRIEND POSTED A THREAD ABOUT YOU N I WAS FEELING FOR YOU N A BIT UPSET ! YOU HANG IN THERE GIRL - BE STRONG - LOT'S OF GOOD PEOPLE HERE . GUT FEELING TELL'S ME THAT YOU WILL GET THROUGH THIS . PLENTY WATER,FRUIT,FRIEND'S.       DEANXXX

[mistybean]

And remember this  is only temporay.  

That keeps me a little same.

shot 21 today out of 24.

[strator]

Hi, I  felt the same way my first week about the plunger. Still do sometimes. Wish I'd spent more time the 1st few weeks just going about life rather than going about life but looking around every corner or behind me wondering where the sx were. They came. I consider myself one of the fortunate ones though. 1st shot night had some chills but otherwise relativly good for first couple of weeks.
Going into week 12 and still working construction although usually only have to do about 6 hrs a day. Last week besides work I actually managed to live on about 4 hrs sleep night (not a good idea) doing a bunch of heavy work around the house to prepare for my Dad coming home from surgery and rehab. Even got a new painting going..
One thing- I think the physical work-no matter how much I don't feel like I can do it - once I get started I feel way better. Exercise keeps you loose and stimulates you. I don't mean go to the gym and kick a** for 3 hours. Stretch while your cooking, or watching tv. Reach up and hit the jam when you go through a doorway-etc. I found out early that rather than good vs bad days, I have good versus bad hours(The first 2 or 3  in am are the worst for me). But when I feel lousy I know I'll feel okay later. It kind of breaks it down into bytes so you don't focus on tx as one big bad year. So I might say 'man this hour s***s. But I try not to say tx s***s.
Most importantly through support groups like this and others,I work everyday on my fears, doubts and reactions to things-rather than to the things themselves. I didn't want to tx because I was afraid of possible depression and mood swings. I spent mos working on those fears 1st-then started tx. Still do it, cause everyday something new pops into this broken thinker. I also plan naps into my day (and give my family a heads up-"hey I'm gonna nap around 5 for a 1/2hr") and consider the naps part of the tx package, rather than feel guity or useless cause I have to lay down. Support, support, support. You're doing the best thing you can do - voicing your concerns and talking to people that have been on both sides of the door.
Find every excuse to laugh. If I feel a little little Jeckle & Hydeish - or for instance if I turn around and snap at my 13yro while he's making us a bowl of popcorn for our planned weekly 'Desperate Housewives' party(yeah I know)- I'll actually tell him I'm going to go give myself a timeout-and do it..
There's only certain parts of tx we have control over. Taking our meds, eating reltively healthy, sleep, communicating with our doctors, etc. Concentrate on the parts you can do. Worry tends to keep me from accomplishing anything-you know-
waiting for the sun and moon to line up and all that. A friend suggested they are always lined up-if you just look at them from the proper angle. I start to worry, I write the worry down, put it in an envelope, and dump it in my God draw. Works for me.
May YOUR journey be Blessed.
Don:)

[Forseegood]

more than one thong huh? they must of given you a "package" deal.

[NYgirl]

Yes ice cream ice cream ice cream is the WAY TO GO!

That is one of the BEST things about treatment.........all the great excuses to eat lovely things like ice cream!

All my prayers go out towards you guys in here. face it we all need it (although some more than others right now...that will turn around in no time at all I am sure!)

Debby

[swissgal]

Hi Everyone. Just recently found out I have Hep C geno 3 with a viral load of 3960 UI/ml. Seems pretty low to me and i hear that geno 3 responds well to treatment. Am going to the GI next thurs. My first visit. I suppose we will talk about tx. From what i have read it scares me quite a bit. Any advice would be much appreciated.

[azgrl]

Welcome swiss.  I'm a geno 3a vl 21900 stage 1 grade 1.  There a quite a few 3s on here.  Many who have way better advice than I have.  I'll be treating just after the first of the year.  After my surgery.  Have you had a biopsy yet?
Again welcome to the group.

Deb in AZ

[swissgal]

Nope. no liver biop as of yet. I guess i will find out if i need one next thurs. I did have liver tests done via my blood works and they all checked out as normal. Its all so much to take in at the moment. Thanks for the welcome

[azgrl]

It is a lot to take in.  It can be overwhelming at first and then things kind of cool down.  I am recently diagnosed as well.  It was only the end of September that I found out.  There is a lot of good advice on this board.

Some doctors don't see a biopsy as necessary with 2s and 3s however I am an advocate of getting them.  I wasn't going to have one done either since I had only had hepc for a short time and didn't think there was any damage and although the damage is minimal it is there.  There are many cases like this.  So if possible get one done.

Reading through the archives will help a lot as there have been many discussions on treating and questions to take in to the doc on your first visit etc.  They helped me a lot with my first visit.

Again welcome.

Deb in AZ

[Oreos]

Hey Chev!  Glad to hear you're doing so well.  Feels almost strange being this far down the path, doesn't it?  When I look back at that year of treatment, it seems surreal - like it was someone else's life.  Quite frankly, I hardly remember a thing about it.  Thank goodness for brain fog!  I do remember the crappy times I had on tx and how you helped me through.  Thanks for everything : )

[GoofyDad]

Welcome from another 3a. I'm treating with pegasys, entering week 12.

Most here, incuding myself, would strongly recommend the biopsy, or bx. It gives information that may be of value for pre-tx, during-tx, and post-tx decisions. Most fear it, then say it was nothing once the have it behind them. I'm firmly on that list.

Here's a brief abstract that talks about to bx or not. There's a lot  of debate out there, jmjm530 may have links handy, we'll see if he pops in.

Another thing to pay close attention to is the debate about appropriate treatment duration for geno 2's and 3's with Rapid Viral Response (RVR). That means you clear the virus by week four. Some European studies suggest, and US hepatologists are noticing, that 12-16 week treatments are indicated for geno 2 & 3 RVRs.

60-80% of geno 3's will RVR, so the odds are that this is something you will be discussing at some point. I'd recommend you begin these discussions NOW, as this is a very controversial subjejct, and one on which it may take a while to find your personal position. You can easily learn what is known on this this subject here, then discuss it intelligently with your doc to find your position.  

Keep asking questions and we can lull you to sleep with stats and opinions.

[GoofyDad]

<b>HAVE YO'SELF SOME FUN!!!!!</b>

I took a vacation. I biked with my kid. I went camping. I went diving. I sat in at my kids school. I did all kinds of **** that frankly, I really didn't feel like doing. But I wanted to do it  while I could.

It felt great. Not always, but mostly. I feel so much better for having had some serious fun for a few months before starting the old jabber-roo.

Go skiing. Rent a cabin. Do whatever fun loving folks do where you live. And help someone out too. Go rake the leaves for a neighbor. Or buy someone some groceries. Paint someone's front door. Take someone and buy them a Christmas tree. Or just give someone a box of candies. Get out and live. You may not feel up to all this in a few months - so why not do it now?
------------------------------------------------------
Choice 1: Have a crappy time waiting, then start tx.
Choice 2: Have a not so crapppy time waiting, then start tx.

You get to choose <small>..... stepping down from my soapbox now </small>

[NYgirl]

Eat as much ice cream as you want...and sleep in on the weekends if you can get away with it!

I'm not sure which has made me feel better...but they both are enjoyable!  :)

On a more realistic note:

WATCH YOUR HEMOGLOBIN LIKE A HAWK - but even BEFORE that make sure your doctor will treat ASAP with Procrit/Epogen!  I would NOT have made it past the anemia if I had NOT been treated so aggressively with the Epogen - so all my ice cream eating days would have come to an end!   ;-)

[FlGuy]

Yep, attitude is a big part of it.  Once the fear subsides it's time to brace yourself with committment and finding or making as much fun as you get find.  Someone posted recently that you don't feel like junk while laughing - aboslutely true.  Also true that if you stoop to help someone else your own worries go away for a while.  Random acts of kindness pay off in many ways.
Good post Goofus.

[swissgal]

Thanks for all the advice! I live in Europe and hope they might be one step ahead of the US on this one as they do on other things (and this is an American talking). It seems in the US so many drugs get unnecessarily tied up waiting for FDA approval. Anyway, I guess I will find all that out when I go to the gi. I will deffinetly keep you posted!!

[friole]

Will someone please tell me what thread to read where Carolyn posted on.  It seems that I have missed something significant (nothing new there, LOL) and would like to read.

Carolyn, you are in my heart.  I could see from the first post of yours that I read what a treasure you are.  Stay Strong, Carolyn

Kathy

[FlGuy]

Vote For Pedro.
The solo dance scene was...dynamite.

[Forseegood]

one of the best comedies to come out in years. And it's a really good dork meter too, watch some people watch it and scratch their heads, asking what all the fuss is about. NERDS!!!!

Had much the same experience watching "Spinal Tap" when it first came out. My friends and I were in the back row on the floor laughing, and there were all these younger headbangers (there for a rousing rock movie no doubt) in the first row not having a clue as to why we were in hysterics.

Gee, and I'm 52??? whoda thunk it. I know, I'm being a bit of an elitist snobola...BOW TO YOUR SENSEI!!!!

[GoofyDad]

Forgot to mention you should treat yourself to something special, too. Should you happen to choose a bikini wax at a posh salon, learn from my experience and wear clean thongs, or at a minimum be sure they're turned correctly so any stains are to the back. Doing otherwise seems to elicit peculiar looks and undue attention from the staff :)

[GoofyDad]

Did I happen to mention that I generally don't mow the lawn :oP

[Forseegood]

Pa da damp.....