If you knew then what you know now . . .

[cbee]

Hi everyone,

I've posted here a few times and your thoughts and suggestions have been so valuable.  I will be starting treatment in the next few months and have so many questions.  I read, read, etc. but find that you have the most information.  So I ask this question:  If you knew then (before treatment) what you know now (during or after treatment) what would you have done differently? Forwarned is forarmed and I am trying to get all my ducks in a row.  I want to really be prepared.  I will be going through this without much support, working full time in a highly stressful job and caring for my 12 year old son (I'm a single mom).  Any suggestions on how to be prepared for certain side effects, etc. are especially welcome.  Anything that can help me be more organized, etc. while on treatment.  I only (hopefully) have to do 24 weeks (I'm 2a/2b).  Thanks for all your thoughts and for being here.  I have found no support anywhere else.

-cbee

[TnHepGuy_]

I reposted your question to a new thread at the top of the page, where hopefully you will get some responses since it is in the newest threads that most questions and responses are continued. Here is a link to the thread entitled: <a href="http://www.medhelp.org/perl6/hepatitis/messages/38075.html">Q: Post by 'ribaribariba' from a thread below - TnHepGuy_ 1/16/2005</a>


TnHepGuy

[ribaribariba]

hi everyone
i'm another novice in need of 'if you knew then....' type input. first shot last tuesday.  some say first three are worse, some say its cumulative.  worried about depression - what can you take that won't do your liver in?  mine is sort of like an old shoe already.   i was hoping to bounce between the gastro and the alternative health centre with the odd ozone treatment to make up for no alcohol and a bit of therapy to drag all the skeletons out the cupboard AND keep the dragon at bay.  Optimistic?
power to you all

[Califia]

You two have surely earned your crawfish etouffee the hard way!    Have a wonderful time in Nawlins,  and may blessings rain down upon you both.

[GulfCoast]

Hi honey,
Sorry for the slow response, I tend to post right before I go to bed.

Actually my wife was diagnosed w/breast cancer about 4-5 months before my adventures w/HepC. We were very lucky as her doc caught it extremely early. So her diagnosis was favorable in so many ways; early dx, the most common treatable form (mammary ductile, I think)and her genetic markers made her very responsive to tx. All I can say to all the ladies, is get your checkups agressively if you can.

That also applies to guys as my dx came as part of my regular checkups. My heart goes out to folks w/o decent health insurance. I think that should be a national priority but I won't preach about that here.

So to make a long story short, while we were going thru her appointments and meeting w/docs and getting tests I got the word that I had some issues that my doc wanted to discuss (gulp!!!) Well that's how I ended up here, another hepper trying to slay the dragon. As I said in my earlier post, both of us going thru our tx's made it easier to support the other. And, (knock on wood)so far it looks like things are going well.

And to sum up this long-winded rant:
fsplink - It feels great to take that last shot, yeehah!!! :-)
The wife and I are going to New Orleans in February to celebrate once some of this tx is out of my system. It's one of our favorite towns (my wife is a Louisana girl) and we're looking forward to kickin' up our heels and being done with things for a while. I know you're looking forward to the same situation and I'm glad to hear you are so close. Man, what a long, strange trip this has been to steal a phrase from Jerry Garcia.

And of course, it's a great holiday season finishing up my tx. I wish everyone my heartfelt best wishes, easy sx, successful SVR, and lots of joy to start out the new year.
Peace - Gulfcoast

[fsplink]

Congratulations to both you and your wife. How does it feel to do that last shot? I can't wait, I have 4 more weeks!

[Astrolady]

Everyone has given you great advice, I'm also a type 2, I'm in week 9/24, in retrospect the anxiety I put my self through prior to starting tx was such a waste of time and energy, the sx haven't been that bad (knocking on wood) I've had some sh**y days, aches & pains and head aches but haven't needed anything stronger then tylenol.  

I'm not treating at Cedars but I do live in Calabasas (were almost neighbors).

[Tony-z]

The Institute for Traditional Medicine and Preventive Health Care
is about 6 blocks from where I grew up. I am going to make an appointment for an assessment.

The extension. Well its in God's hands now. I know I will do 1 more month. The Dr has not gotten back to the nurse or me. I think he is waiting till time runs out. I will know more on Wednesday. In fact I should know the Final chapter by the end of the day Wednesday.


  I need to do a Kaiser update post. How about your friend??


                  TonyZ

"Love is spontaneous and craves expression through joy, through beauty, through truth, even through tears. Love lives the moment; it's neither lost in yesteryear nor does it crave for tomorrow. Love is NOW!"

[cbee]

Hi Astrolady,

Just wanted to say that I live in the Sherman Oaks/Van Nuys area.  I've had a really hard time finding a support group/friend with some real knowledge of this.  Since you are going through treatment and you are close, perhaps we could talk?  If you'd like, my e-mail address is ***@****.
Hope to hear from you.

-cbee

[honey1616]

Congratulations on making it through tx and finishing up!  I'm glad to hear your wife beat the cancer and I had no idea you both were going through tx together. Best Wishes to you Both!

[harley dude]

Get alot of your supplies before you start tx(bottled water, skin care products like(Aveeno moisturizing bar soap, moist. lotion, and Aveeno anti-itch cream) lots of tylenol or advil which ever one your doc recc. A pill box to keep your pills organized(cause there will be days when you ask yourself did I take my pills today or what"brain fog") box of alcohol swabs, fruit juices, and a good shampoo and conditioner for thinning hair(Nioxin is a good brand for thinning hair and can now be found in WalMarts in the Salon section or at other hair salons, but check around cause some places are alot more than others. A good thermometer for checking fever. A heating pad for some of the aches you'll get(maybe). A bottle or two of aspercreme for joint pains, Biotene toothpaste and mouthwash(this helps out cause you'll probably get some type of mouth sores and regular toothpaste and mouth wash is to strong, this can be found at WalMart also(it's cheaper there). I would consider going on some type of Antidepressant(it sure makes things a whole lot easier to cope with, talk to your Doc about this because you should start these a few weeks before tx because it takes awhile to take affect. I'm sure I forgot some things, but it is better to stock up before tx so you won't be bothered with having to go out at the last minute for something. And don't forget if you have any problems such as sleep, migrains, nausea or whatever- ask your doc for something and if he won't prescribe something, than you Demnand it(it worked for me)- remember there not the ones feeling the sides you are. Good Luck and You'll be fine and before you know it you'll be finished- See Ya- Harley Dude

[GulfCoast]

Hi califia,
Thanks for your kind thoughts. My wife is doing very well. Her recovery fron breast cancer was very favorable (complete recovery) and her sx for her tx were very mild also. We felt very fortunate as we both had to go thru tx at the same time. When one of us was down the other would kick that one in the butt. We got thru it all and we're still smiling, kickin' & grinnin'....
All the best to you this holiday season.
Gulfcoast

[jonihs]

You are in my prayers! Please let us know when you get your 6 mo. results.   Joni

[oldhippiechick67]

There are lots of sites that offer info on tx.  Please stick to this site and the www.janis7hepc.com site cuz they are the two I found most helpful.  I tx for 48 weeks and it was not easy. If you can find a support group in your area, maybe going to a meeting once a week or so will help.  I think on the janis site you can find a group, I am not sure where I saw that...oh ya, on the Pegasys.com site perhaps? But here, this forum, usually you can ask a question and get a few great answers within a few hours.  You can always tack on to another persons "thread" cuz I cant remember if they changed, but they used to allow only 6 questions/thread per day.  Anyways, welcome and best of luck to ya.  So far I am non-detectable, going for my 6 mo. post tx test soon.   Hugs, OHC

[Califia]

Whaddya mean,  last treatment?   No extension?    What the heck is going on, bro'?   Please say it ain't so.

As for Lloyd Wright,  that lowlife San Fernando Valley huckster, don't get me started.    Don't know how far you are from Portland,  but  there's a precious resource there in the Institute for Traditional Medicine and Preventive Health Care,  http://www.itmonline.org .   Subhuti Dharmananda has a strong reputation as a serious scholar and effective clinician.

[Califia]

Hearty congratulations, sir!   My fingers are crossed for you, too.  And I hope your wife is doing well ....

[Tony-z]

cbee


I may have just finished my third TX.

First I have followed The Thief Lloyd Wright for years. His program is bul**hit, I don't usually use profanity but when someone tries to get rich on other peoples misery :-{
I sorry but it is not that easy to get rid of the HCV virus.
Alternative therapy play a role in treating hep-C, but does not get rid of the virus.

Get in shape physically and get relaxed mentally.

Make sure you have time to take a rest if needed.

Everyone reacts differently to the meds, some are like me, they feel horrible right of the bat and some never feel to bad.

Water, Water, Water, ya water, drink lots.

               There is a great family here.

               Good Luck and God Bless,

                    TonyZ

[GulfCoast]

I agree with all of the good advice given above. Avoid stress, drinks lots of water, get plenty of sleep, take a good multi-vitamin everyday and eat a liver-healthy, immune boosting diet (low-fat, low sugars, no caffiene if possible).

I am a 48 year old male, dx'ed with HepC 2b, VL 7,000,000 and high ALT/AST levels.

I was placed on pegasys/ribvirin, 180mg/1200mg for 6 months. I was clear at 12 weeks (50ml<) and my ALT/AST levels are back in the normal range (they were in the mid-100's). Friday night was my last shot (yeaaaa!!!!) and it came far quicker than I thought. I never really experienced "riba rage" or depression and I didn't get anemic. I felt very fortunate as I know some folks have had some rough times. My thoughts & prayers go out to all in that boat.

I worked all through my treatment and the sx were mild for the most part. The day after my shot I would experience mild flu symptoms but could deal with them. For example: we had technical problems where I work and I had to go in yesterday after shot night. I didn't feel terrific but was able to work and resolve the problems I was called in for.

I agree with the poster that said not to dwell on the treatment or disease too much. I think the first couple of months I brooded too much and kept waiting for the shoe to drop. I kept putting things on hold just in case the sx were going to kick in. Just make sure you take the tx as prescribed (don't miss), eat and live healthy and take time to laugh and enjoy life. It doesn't stop just because we're on tx.

On the plus side I've lost about 25lbs which I needed to do. My appetite was reduced and I seemed to crave food that was good for me (fruits & vegs, no fried food).
On the negative; I'm starting to lose a little hair. I knw that's minor but hey, a guy can be vain also.I haven't lost too much, my wife says she can't see it but I know. Sigh....hope it grows back.  

I think we 2b's are fortunate in that the sx seem to start about when our tx ends. I know that's anecdotal but for me the hairloss, tiredness and aches seem to be showing uo now as I finish my last week of ribivirin.

The other plus is this experience has made me become a little more introspective and forced me to slow down and look at what's really important. Before this I was one of the people who was  very career oriented. But you know, very few folks say they wished they spent more time at the office when their life is ending. The upshot is I'm taking more time with family & friends and taking better care of myself.

Next week I take my next PCR test and see if I'm still clear. I've got my fingers crossed and I'm looking forward to not taking anything.

I wish everyone SVR and a easy treatment. Cbee, you'll be through this thing before you know. It can be done and you can overcome this thing.
All the the best to all the folks out there.
Peace - Gulfcoast

[cbee]

You guys are just the best!  By the way, anyone treating at Cedars in Los Angeles?

-cbee

[DonL]

You want to get Hep A and B vaccinations (can do them under tx also). Stock up on water bottles, analgesics (as allowed), saline solution eye drops, no-iron multi-vitamins. For me, pasta and tomato sauce and fruit were what I wanted to eat, but people vary so look for the things you like.

Get your dr to give you copies of all your bloodwork, diagnoses, etc. Make lists! Abandon the unnecessary, such as dusting, in favor of more time with your son. Don't know how work is set up, but as you go through tx, see what is essential and what can be delegated. I was able to work through tx, though at the end, the mental work was the hardest.

Get into a good head space--with friends, work, etc. as best you can. The mental effects of tx were the worst for me, so having understanding people around you (and Medhelp, where people REALLY understand) was/is key. Accept that tx will affect your life and will limit the things you can/want to do. Also, accept that it will end and that most sx are temporary and caused by the drugs you are taking and they will stop when you stop the drugs. Not a good time to make major life decisions, if you can put them off. Make sure that someone at your dr's office is good to work with. Keep in mind the best sx of these drugs: increased empathy with others and their problems.

Stay positive! Remember that tx positively sucks. Consider yourself lucky that you are getting tx and that it is only 24 weeks. Humor and sarcasm worked well for me. Resist the impulse to ram into stupid drivers or to tell Aunt Ruth what you've always wanted to tell her (or, use tx as an excuse to tell her).

I ramble, but you get the drift. Good luck.

[cuteus]

all these alternatives only have "testimonials" and personal anecdotal experiences to back their claims, they can be very convincing and emotional. They offer no scientific data to back their claims. I take it with a grain of salt.

[Laika]

I love this thread!  A great question, cbee, and every single answer seems to address some concern that

[Soleus]

Sorry cbee I forgot Lloyd like most people that sell alternative medicine are not keen on interferon. Natural Wellness which sells maximum milk thistle is they same way. The alternatives meds are not without merit but there claims are more than a little slanted. Lloyd

[new-sojourn]

take more saunas/steambaths...have more massages...eat less sugar...juice more veggies...and cut out ALL caffine..worry less...I was a 2b b/cl'd by day 18....2 1/2 years ago.

[cbee]

I just came back from the movies to find these replies.  Thank you so so much for your thoughts.  I'm feeling like no one I know understands what I'm going through and what I will go through once I start treatment.  I'm so glad to have found you.  So to all of you, thank you for the beautiful gift of sharing your experiences and knowledge and helping this scared little rabbit through this.  

-cbee