Just ramblin'

[couchpotato]

Being that it is Saturday and it's always quiet on the board thought I would write in with an update. I'lm finding time to read postings occasionally and am always surprised at the number of newbies. You guys have found an excellent souce of support and information here and you'll find that regardless of the traumatic news that brought you all here, there is hope and love in abundance, all's not lost.

I had my 1 year PCR last month and I am still undetectable, so for me, it is over. Really, I didn't find the treatment itself all that difficult, sure, there were good days and bad, but all in all, it was completely doable.

Hubby had his 1 year (Nov. 16) post transplant exam on Thursday and has been given a clean bill of health! Well, when I say that, I mean he is as healthy as anyone can expect for all he has been through. He never had any rejection and now 1 year out, the chances are slim he ever will. We were hoping he would go back on tx this winter but the transplant team wants to wait because his liver enzymes have been normal for the past few months. They will wait and watch his blood work and then biopsy when (if?) things go wonky. I think there are differing views on that, but we have trust in this team.

So, on the 31st of Oct. we are flying to Mexico for 6 weeks of rest and relaxation! This is our reward to ourselves after the year that we have gotten through. Life goes on, right? Time to put some of this behind us and act like normal folks again.

Everybody, take care and keep the faith. We are warriors.

Mattie

[couchpotato]

Kanzou, I know San Pancho well, we are in Rincon de Guayabitos, just north of your buddy. Beautiful area all around there. The living is easy!

Daryl, haven't seen you posting much, guess you are busy like I am. Congrats on reaching the 2 year mark, must seem like a distant memory to you now. Hope you have continued good health.

Anna, thanks for the message, I never meant to scare everyone so much, those were such awful days. Hope you are doing well.

Mattie

[cuteus]

hang in there, it will be blue again, then gray, then blue...

you will feel better after tx, statistics are on your side on that one. I know it is a heavy load those 6 pills(or more) and those ml of interferon, even if not in actual wt.
think HCV free.

[strator]

I haven't seen the SI ad but one thing I do believe from advertising classes in art school. Although I mightlean towards a softer picture stated by others, you've got very few seconds to capture somebody's attention. Anything that gets them to stop before turning the page is considered successful. Also the content isn't always as important as 'branding'. You see a name of a product over and over and it comes to mind. If the words Hep C get imprinted on minds, some people may at least get curious. I had no idea that there even was such a thing until I was notified tests showed I may have it. During the first year I knew I told very few people outside my family. In my recovery meetings I referred to my 'liver' problems. After leaving my first night at a Hep C support group last year at the VA in West Haven- sitting with people who'd been through or were on tx, even some who'd had or were awaiting transplants I went to one of my regular meetings  and  actually used the words Hep C referring to my 'journey to decide  about tx'. Pretty soon I'd  shared about it at all my meetings. Suddenly people started coming up telling me they'd been through treatment  and offered me all kinds of support. Since then quite a number of people have approached me  with ..."they told me a while back I have Hep C but I don't know anything about it...or I figured as long as I wasn't drinking it would go away(my viral load doubled after a year sober). At least two of those people have now approached their drs about treatment, a few asked how to get tested, and another is joining the VA support group this week. Just saying the words Hep C has formed a bridge.That ad may just be a start.

[cougareyes]

Actually today, where I live "the sky is grey". So I guess it matters where you're coming from and when you're looking at it at. I need to take that to heart so I can be more tolerate of others opinions.
I do find with these meds I can sometimes just be looking for a fight.    Peace

[cuteus]

TY, I did have that SI issue and had leafed through it without noticing the ad. I agree with you, it looks like the face of a bruised person, not a leper. Akin to a bruised/battered liver. With the headline of "If Hep C was attacking your face instead of your liver, you'd do something about it!" the message is clear; if you could see what hep c is doing to your liver, you would act on it.  How can anyone think is promoting that hep c is a facial disfigurement disease is beyond me. Even my young daughter can see it is not. The goal of the ad was to make people act on their hep c, and it clearly states that tx is not for everyone. This is not a Liver Association awareness ad, it is a marketing ad, and I see it as such. I can't believe others are reading more into it than that!
It reminds me of the bunch that criticized the yellow t-shirt used in the NYC march, they complained it meant jaundiced to them. huh? I have seen yellow and orange represent hep c at many sites and did not see a problem with it, but other people did.
It never ceases to amaze me the variety of interpretations of the same item or event, glad that we all agree the sky is blue!
or do we?

[annainitaly]

hi mattie,
it's a joy to read your serene words. I remember your dramatic post,with hubbie already on the helicopter and you writing your anguished message here. how everybody was worried, because of the long silence that followed... gosh, a year ago, already!
have fun in mexico! lots of guacamole!
love
a.

[Healed24]

I would like to know where the Hep C article can be found. If anyone can tell me I would appreciate it. Eventhough I have yet to read the article I agree that if it's main purpose was to educate the public then they should show a "Average person". A person that looks like someone you would see in the grocery store, or in church. Now on the other hand if their purpose is to scare the public then showing somone that is disfigured would definately get the job done. I think that the effectiveness of advertising depends on the message that is trying to be portrayed. Now not having read the article, I can't give my personal opinion on it, but I do know that before I was diagnoised with HCV I never even worried about it (I never used drugs, was a virgin and didn't have any wild teenage years). An article that showed normal people do get it, would have really helped me. Just my opinion.

Brooke
GO BLESS

[derail]

sorry i missed you yesterday
real glad things are working out better for you guys
wow !yr time flies
i too have passed the exam last may 1 yr post tx clear and coming up on the 2 year plateau
cheers to both of you and remember the toast is cranberry juice daryl

[cuteus]

Yes, dinasty fan, I am, since 1996.  I am on LI and I try to go once a year. Of course it did not happen for the last two years due to hcv and to the fact that my daughter is not a good sport about baseball anymore.  This year I got a friend from another forum to come with me in a charter trip. It was an awesome game, even though they lost.  We have to do it next season. Hopefully they won't change too many guys in the team, tossed out for the new faces. I hate not knowing players when I go to the games.
Maybe we can get amerabrit to join in!

[Kanzou]

Your casita is 45 mins north of PV? A good friend has one in San Pancho (San Francisco) a few hops up the beach from the resort Costa Azul. Pre TP, 18 friends from across the US gathered there (pad next door too) for five days of fun and laughter. To avoid the crowds we gathered in late Feb. Great time except for those damn no see-ums.

[cuteus]

what positive results? did you relapsed?

[jmjm530]

Kalio,

Can't agree with your more. I am in that ad/marketing game and understand what the agency attempted to do. But it's a very bad/amaturish job. To compound the problem, most people only look at the headline and visual and don't even bother to read the copy. So now everyone knows what folks with Hep C look like. :)

Obviously, what they attempted to do was to copy a very good AIDS awareness campaign from some time back which I believe depicted a person with AIDS who looked very normal. The message there was that any one of us could have AIDS. That ad worked very well.

-- Jim

[new-sojourn]

could not disagree more!  What the hell were they suppose to put-a fuzzy kitty?  a rainbow w/a beautiful girl running thru poppies?

That face does look like what your liver looks like-b/that isn't even the face of a cirrhotic liver-then it would be yellow and grey w/ozing sores and clumps of white twisted scar tissue--that's what mine looked like when they got a visual during my massive bleed.

People like you are the ones they weant to reach.  People that don't own their disease and work to break sterotypes are furthering the ignorance that shrouds this disease.

the whole point was to shock the public.  Afterall, 4-10 million in the USA have hep c and the prisions are releasing hundreds of thousands of infected people every wk.

The vast majority do not know they have hep c and will never be able to get treatment-those free programs are about to disappear-they are trademark related, not humanatarian efforts by the drug companies.  you don't rally thing your friendly legal drugs dealers are givin' drugs away for free out of the goodness of their hearts do you?  yopur corner drug dealer has more heart than the pharma's.

This campaigne is to get people to recognize what's goin' on inside their bodies w/o showing an actual hep c diseased liver.

So, screw the puppies and rainbows and here's to a clever ad that could have had  a picture of my liver on it instead.  then you would rally be sick and disgusted.

[v eggie dip]

"Many people never use illegal drugs OR have an addiction of any kind and they have contracted Hep C. THAT is the message people need to hear. They believe they are not at risk if they haven't engaged in those behaviors and they are wrong."

I AGREE WITH THIS STATEMENT 100%...

Until May of 2005 I thought HCV was something street people that were hooked on drugs got...I am an educated woman, but never had the NEED to learn about HCV, there was never any information given to me regarding it...Well guess what, I am HCV active and got it from a blood transfusion...I am not hideous looking, actually some people may say I am quite attractive...If you met me you would never know I have a chronic disease...The stigma of HCV needs to be broken, and ads like this one are marketing mistakes, IMHO...

But, what do I know, I am just "a dip*

[Kanzou]

Tenga grandes vacaciones! I'm sure this south of the border adventure will uplift your spirit greatly. I love Mexico at this time of year, its their spring...weather is in the low 80's...super nice!

No matter what, drink only filtered water and be sure you bring paper work verifying the medication you are bringing into Mexico. And only bring original bottles having the rx.

On the bx, I met with my surgical team Oct 4 and they have put me on a yearly bx due to my bw all showing positive results. Bw, though, is still monthly. Double check again with your husbands surgical team when he should do bx's. Its important.

I'm glad to hear you have stayed clear too.

Enjoy.

[cuteus]

nope, have not forgotten, no sirie! are you still traveling to the City? let me know!

I just got another yankees visa card and got subscribed to SI unknowingly, I might as well take advantage and check the ad, which edition is it in?

[Amerabrit]

Hi again, it's the Oct 10th isue.  I thought it a very effective Ad.  It states very clearly: "If Hep C was attacking your face instead of your liver, you'd do something about it!
The picture in the Ad looks like the face of a fighter, a boxer actually...  Funny how we all view things differently, isn't it?  I do still go to the city and you will be hearing from me, one of these days:).

[couchpotato]

Thanks for the good wishes everyone, yeah, it feels great to get the news we have after all the turmoil. But, we know we are not oput of the woods yet, this is a long journey we are on, only one of us has gotten off the bus and I'm holding my hand out to pull him off with me.

Mike, thanks for the info, I haven't logged on yet, but I will. I have complete trust in these doctor's, after what they got Bui through, they won't fail us now. We did question the wisdom of waiting but I think they want him to recover all his strength before hitting tx again, that's fine with us, we have to put our faith somewhere, don't we?

Kanzou, I know you are a transplant survivor also and my heart goes out to you and your family. Funny, we had e-mailed the American hospital in P.V. about blood work and have it all in place but these doc's in Canada say that during the 6 weeks we are away, nothing will change so drastically that we need to follow through with them. We may extend our trip (we own a small casita 45 minutes north of there) and if we do, then do a CBC panel. Bui's AST is 25 and has been for quite awhile. ALT, GGT etc. are all within range. I have my fingers crossed, I know how easily things can change but we are aware of the risks, and are willing to take them.

Cuteus, thanks for the reply, you have been a great cyber friend. You too, Chev.

Be healthy and happy
Mattie

[cougareyes]

Sadly the ad just hits the American public where their priorities are : vanity. Which is just to get people that aren't treating to treat; look at the sales of anything to do with weight, beauty, plastic surgery.
The fact is most people look good, even to this day; having HCV for 25 years and being on tx, people don't take me serious about how awful I feel.
The AIDS compaign was very successful, because it was the truth; and it's the same truth about HCV. Most people have been around forever with this silently wrecking havoc and possibly giving it to others. People need to know the face of HCV is THE FACE NEXT DOOR.
I hope people see this is just an ad to sell drugs, it is not an advocacy for HCV.       Peace

[avidreader]

I also think it is very important as a group of people living with HCV that we be very careful not to divide ourselves into two groups ie: the "worthy" infected who picked up the virus via transfusion or medical procedure vs the "unworthy" poor who might have picked up their infection through IV drug use because of an addiction (a terrible disease in of itself) or because of the not uncommon indiscretions of youth who feel that they are infallible. If we divide ourselves and we weaken ourselves as an advocacy group.

[DRAGON SLAYER]

Hey Mattie,

Glad to hear that you're both well....I guess it's due to the  Arctic climate....:>). The Mexican fiesta will do you both good & it's long overdue.

Best luck to all,
Ben

[chellski]

Sounds like good news for you....its always and inspiration to hear from someone like you and your hubby who've been thru this survived......thanks for posting and enjoy your vacation - you both deserve it!    

p.s. dont drink the water! lol!

michelle

[Amerabrit]

I'm sure most of you saw the ad but for those who didn't, myself included, it's great to know there was a full page Ad in SI about HCV; my husband just handed it to me.  Slowly but surely HCV is getting the attention it needs..

[Amerabrit]

Couch:  Your news is wonderful to read, I don't get back here too much these days so seeing your post was really great!  Continued good health to you both and have a blast in Mexico:)

Cuteous:  You sound as good as ever! Just don't forget where I live:).

Mikesimon:  Hope all is well with you Mike it's nice to see you're still posting and helping newbies;  stay well.