Whats the point of it all??

[BronxRican007]

Whats the point of it all if before, during, and especially after treatment, I'm gonna feel worse! My mind is the only thing bothering me right now. I have a tiny right abdominal discomfort and some skin problems but otherwise I feel pretty darn good. I don't want to go through 24, 48, or 72 weeks of this TX and it's associated SX...just to feel worse at the end or just to prep myself for another wait..this time for a transplant!?!?! It just doesn't make sense! I just read twotells post and frankly it depressed me. I'm happy for twotells especially for the valiant effort. And I'm happy for him because he's happy with his SVR...but I can't do what he did! What's the point of the rigorous TX if he still needs a liver transplant if HCV destroyed his liver? A five yr wait for a transplant because he's O+...I guess I'll have to wait 10 yrs because my bloodtype is even rarer. I'm tired of waiting for my gastro appt, then after I'll wait for a biopsy appt, then for bloodwork etc, etc...it'lll be months B4 TX. Just to be miserable from SXs...It just doesn't make sense. Waiting for basic info is driving me nuts; viral load, genotype, results of ultrasounds...I haven't heard anything on the results. I wish I didn't know I had this monster in me, worse is not knowing if I've passed it along. HCV SUCKS!!!! I HATE IT!!!!!!!IM GONNA KICK ITS ASS!!!!!!!!! Some times I just gotta write.
Thank u,
fa letinme,
b mys elf
...agin!

[Califia]

You say the only thing bothering you at present is your mind?  But  to borrow that United Negro Collge Fund slogan, a mind IS a terrible thing to waste.   Try to take it one step at a time--duh yeah, I know you have no choice but to do that very thing--and base your decision on hard data, once you have it.   You're totally right:  It IS about delayed gratification and reaping the benefits later on.  I, for one, don't want to hit old age with liver disease.  That's really asking for trouble of the worst kind.  

Just promise you'll at least biopsy, okay?

[BronxRican007]

Oh I will do it all; biopsy, tx, whatever but I will be pissed if there are no benefits reaped from the fight. Just sounds like a real roll of the dice; and better than even odds would be nice! Man we got to beat this thing. I'll give it my best shot but I won't be nice about it...that would be unmilitary.
On Monday I go into battle and I'm going to convert myself into the worlds biggest medical appointment pest!

[Califia]

That's the spirit.   No pasaran!

[BronxRican007]

You know us Latinos...we hold a grude! I'll be pissed off at HCV forever!

[scruffy]

I got that vibe from you-YOU THE MAN!!!Kick assssss!!

[hepcgetlost]

I can only echo what cuteus, scruffy, califia and everyone else said...which you got already before I posted. So all I want to say is we're all here to support you and do whatever we can to make it easier. Keep coming back and be as angry as you need to be. This is family, and we definitely understand where you're coming from. Judi

[cuteus]

you will have to ask twotells if it was worthy, only he can answer it.  But the tx might have bought him time to wait.  If he did not tx, he might have been entirely at death bed, we don't know.
Besides, most people do not feel worse after tx. the opposite is true, if you have been reading the long posts, you will know. it is depressing when relapsers or people with severe liver problems post, but you have to focus on the majority's experiences. If your liver is not in severe damaged state, there is no reason why you would need a transplant or feel like death after tx.
I did my 72 wks, was not a ride at Great Adventure, and I don't feel worse than before tx.  Snap back into perspective. Sorry you have to wait to find out how bad you are, but that is the reality of the medical system.
The main reason to tx is to erradicate the virus, but damage reversal is an addittional benefit.

[cuteus]

reread his post...HE DOES NOT need a transplant!
where did you read that?  He seems happy to have treated because he improved the stage 3 he was at, Not ESLD, and conquered the cryoglobulinemia brought on by hep c.
  Come on Boricua! you got to take your time to read the posts well, chico!
Do you want to wait to see if YOU get the cryo?
Que pasa, muchacho?  calmate, estas pensando demasiado!

[scruffy]

The point for most, I would think, is to stop a disease that can destroy your liver. There are variations on the theme such as slowing damage progression and reversing fibrosis but basically to save the liver. Not everyone gets svr and not everyone suffers horrendous sides. This is why the decisions are tough and why waiting is difficult. Such is life. frank

[scruffy]

Besides, you got something more important to do then fight this scourge of a virus? smile. frank

[snook_man]

Whats the point? Man, I asked myself that same question.. 27 years old and taking a med that was gonna make a healthy energetic young male slow down was not my idea of enjoying life. But you know what, thats the point...To beable to enjoy life LATER!! I'd rather do it while I can, than possibly wait and suffer from ESLD later.. You think tx is bad, read the stories about ESLD!! You gotta stop the virus in its tracks. There is a reason you where diagnosed, a reason you found out now. Somebody gave you an opportunity to react to the situation, sort of like a test..

Twotells was alittle bit confusing in his post as I almost responded on why he implemented that he might need a transplant at a stage 3. I'm almost stage 3, and I was told 10 years if I did nothing, and continued my lifestyle.

Point is my man.. You said you where a soldier right? Well, you are a bit better prepared than most of us. You have experience at war, and war is exactly what this is..HCV is the enemy. It is constantly attacking you.. I know you are not gonna allow that, are you? Fight that sh*t man, and give it hell! You have alot of people watching your back, and ready to pick you up if need be.

[bon_vivant]

That is definitely a personal decision that only you can make... It's a matter of what you can live with, vs. what you can't...

I will say that it helps to be knowledgeable when going into this, & it is better to  be at peace with your decision...

I definitely went thru "SELF-HELL" last round, & although my TX was "& Still Is"  optional....  I'd still say that it is doable, & WORTH it...
(I just wish I had of known "then" what I know now)

I have found it better to have HOPE vs. EXPECTATIONS.....

For most sx there are other medications to help alleviate them... it's just a matter of being knowledgeable enough to recognize symptoms & when to ask for help!

Weather you decide to treat or not, (even go an alternative route to maintain till something better comes along)....you have stumbled upon one of the most informative places I have ever found on the net...  & I am sure you will receive the needed support, & resources here!
:)

[layla]

I know you may find this very difficult to grasp right now but I can tell you when it is all said and done and you are SVR and you look back on tx and the time you spent on tx, it will seem like a little blip on your radar screen of life. Time heals wounds and your time on tx will be like an old wound. Having SVR is wonderful. LL

[LvdByGod!]

amen!

[snook_man]

LMAO!!!! Ha, thats what I'm talking about! Anger is good. Nobody said we gotta be nice to the enemy, its war remember!!
Do whatever you gotta do to beat this thing.

[Honey15637]

Bronx,,,Now you are getting to the right attitude to barbeque some dragon!!!  We all go through this,,,first the sadness of why me??  Then the anger sets in,,,,as we are refuse to let anything foreign take over our body lol  And then of course "oh sweet SVR".....You will make it Bronx!!

[Honey15637]

We should be in a commercial for interferon and the riba!  All positive notes of course!

Take your Riba,,,,MMMMMMM.....Good to the last drop!

Not sure where to stick it,,,,tummy or thigh,,,,thigh or tummy,,,,Doesn't matter,,,,its all good!

Taking my pills,,,,,,,Yummy!  And its so good and its good for you too!

Want to join the SVR gang,,,,Take your medicine and do your time!

Skin getting rough??  Post tx,,,,,soft as a babys behind!

Demonstrating the  shot......And this could be you too!

Memory at a loss,,,,,Don't despair,,,,Treat Today!

Liver drying out,,,,,Let interferon work its magic!

Join us today and eliminate that bug,,,,Can't wait for my pills and you will be too!

LOL,,,I'm sure you guys can add alot to this list! Happy Sunday All!!

[Honey15637]

LOL

[Kanzou]

You need to know that thousands and thousands of people die every year waiting for a liver. There is NO gauarantee that you will receive a donor liver just because you're on the UNOS waiting list. UNOS is the United Network for Organ Sharing, the people who rate you when you need an organ for transplant, and help decide if you get a liver. That's changing today but that's another story.

As of today there are 17,346 people waiting for a liver transplant. This year, so far, there have been 1,042 transplants. Last years TOTAL was 6,168. You do the math. Every single day hundreds make the waiting list. Do you want your name on it?

I personally watched two guys who took your road of non-treatment die AFTER transplant. Why? There  where so sick and near death when they had their transplant they weren't strong enough to recover. Liver transplant is setup this way; currently, the sickest person is the person who moves up on the list and gets a transplant. This means you are end stage, a few days, hours from death. When a donor liver is located and matches your physically body, passes inspection, AND you are healthy enough to survive surgery, then and only then are you wheeled to OR.

I roomed with a guy who had ascite and in terrible pain. Every week they drained 8 liters of fluid from his belly. That's like 4 large plastic family size Coke bottles. Was he in constant pain? Hell yes. When he was awake he howled like a wof to the moon. This is stage 1. Then you get jaundice. You look like frickin banana, weak from exhaustion, in constat pain, can't eat cuz your belly hurts, hairs falling out, itch like a flea ridden dog, and very depressed cuz there is no medication that can help you.

I listened to the woman next to me die. Why? She was number 1 on the list, I took her place because she was pass the stage of acceptance.

Don't believe me? By your sign in name I'm assuming you're form NY state. If so, my davice to you is to go here and look up the nearest transplant center to you and go see with your own eyes. Go talk with post transplant patients. The post transplant folks are very willing to talk about their experiences. Most of them were stubborn, ignored the fact they had HCV, and figured HCV would go away on its own. WRONG. The pre, well, there're near death, heavily sedated and can't talk. Some have been in that stae for months. That's the end stage waiting game. One visit and if it doesn't change your mind nothing will.

Here's a web site for NY state liver transplant centers:
http://www.optn.org/latestData/rptData.asp

Or choose your state and area from http://www.optn.org/latestData/stateData.asp?type=state

If you don't fight it now, I've told you what you can expect. Don't be the latter. Oh yeah, I forgot...end stage liver desease can have kidney failure accompany it.

[Imagine]

Good question "what's the point of it?" I had (and suspect many had) the same question when we were diagnosed and started learning our options about the road ahead. You could ask the same question about many things in life. Take the hard road hoping the risk will be rewarded or the easier road where the map is much better but the reward not so great. I guess we have the power inside us to possibly change certain outcomes. I've made my choice and one of the reasons was anger at the disease. What your feeling is normal and I know you'll make the right choice for you. alan

[Califia]

Thank you for that powerful description.  It couldn't have been easy to write.

[Honey15637]

Kanzou,,,Geeze,,,what an eye opener for all of us and thanks for leading us back to what this disease can do to us.  We might not like it,,,but its a fact.  What a heart wrenching post....I wish now,,I could delete my silly post above.  I know of someone now going through some bad times and on the transplant list and it can be a real tear jerker to stand by and watch.  Thanks again for your post!

[scruffy]

Well said. frank

[bluepeng]

You're asking very good questions ... like WHY?  Why should you treat?   It's a process working this out.  It has taken some years of hemmin' and hawing over starting.  For me, it was knowing that it wasn't getting any better the longer I waited.  Your disease is doing push-ups while you sleep .. and what are you doing to get stronger?  If I misread your post, I'm sorry, but I think you were questioning if it was all really worth it.  I'm not sure yet, but I'll tell you one thing .. I have 5 more shots remaining and when I look back on this (SVR or not) I'm going to say I was a fighter.  I didn't roll over on this one.  I didn't drop out, I stood there strong.  I almost laughed my b**ls off the other day when somebody  called Tiger Woods a "Warrior".   Sorry dude, golf and warrior don't go together.   Taking your meds and sticking it out -- that's a warrior.  This place is full of them .. hard core too.  

Stick around, don't focus only on the horror stories.  A lot of hope comes through this thread.  It can change your life in a positive way.

All the best,

Penguin.

[BronxRican007]

I hope this thread does someone some good. I for one have been sharpening my sword for battle with the hospital admin bozos tomorrow morning.  I want the results of all my tests in the morning. Then I'm going to call the gastro doc's office and demand an earlier appt. Finally I'm gonna post anything I find out right here! And if I don't have anything to post I assure you there will be some very frustrated medical administrators feelin my pain. I will make them earn their paycheck, working to find out why I don't know what my tests results are.

I'll skip the hospital visit though. I've seen end-stage cancer many times in the last few years and I don't want to see it again. The point is made...the alternative outcomes are worse than the TX.

On a brighter note...thank you all for the advice and support. Wish me luck. (I hope I don't get really bad news)
Thanks All

[layla]

You are true fighter. I can only say that I can hardly express how much I wish the best for you. LL

[snook_man]

"when I look back on this (SVR or not) I'm going to say I was a fighter. I didn't roll over on this one. I didn't drop out, I stood there strong. I almost laughed my b**ls off the other day when somebody called Tiger Woods a "Warrior". Sorry dude, golf and warrior don't go together. Taking your meds and sticking it out -- that's a warrior. This place is full of them .. hard core too."

Damn, if that ain't the truth!!!

[susan400]

My opinion on this subject, for what it is worth...I've treated numerous times.  Why?  Some may think I'm stupid, or pounding a dead horse.  The reason why I keep treating is to try to avoid ending up on a liver transplant list.  A liver transplant is not the greatest thing to have to go through.  It means that even if you get a liver, you have to take anti-rejection meds, it means that, that new liver will get Hep C.  I would just as soon try to keep the liver I have and work to get it well now, then wait around for a new liver and have to go through the above.  Yes, I am a female, but I have had a hysterectomy, so I don't have the natural estrogen as a protective factor.  I do take HRT, but since there's risks with that, too, I can't stay on that for very much longer.  Secondly, I have a mixed genotype of 1A and 1B and my doctors think that this is why I've kept progressing, had increased fibrosis, etc., over the last 11 years, even with treatment.  But, I don't give up.  I keep on fighting.  Keep on trying.  When I'm on treatment, at least my LFT's get normal and I'm doing what I can to keep the virus quieter.  I'm not advocating what I do to anybody else.  It's my own choice.  I don't feel like I can waste time waiting around for something better to come along while my liver keeps getting worse.  Some of you have that option.  My liver has not been cooperating with me to allow that option.    That's my opinion.   Susan

[Kanzou]

Don't ever give up the fight, never. You do not want the Mercedes symbol on your abdomen that TP gives you.

[bon_vivant]

I have no IDEA what Happened to, or WHERE that post just went... but here it is again... IF it post twice, I appologise!!

******************************************

All...
I truly feel this WHOLE process is ALL just a roll of the dice..... but definitely WORTH attempting to rid our bodies of it!
I have about given up on trying to figure out all the "IF's, & But's" & giving credit for cure to a particular process, or trying to find & lay blame for a failure....
(That would be about like saying everyone is going to have the same side effects, & suffer the same degree)

There are those that are 110% compliant, do everything strictly by book, & take added alternative precautions... & Still Relapse!!!

There are folks that have ongoing Manic Depressive, or Multi-Personality Disorder & On-going Drug & Alcohol Addicts that are successfully treated.

There are those that never drank in their lives & suffer with ESLD....

Then their are those that drank like a fish & have no damage.. (& maybe all this took place 20 years prior to diagnosis)

Progression Rate Can NOT even be blamed on any ONE particular reason in any individual...

I think ALL cases must be taken on an individual basis, as there is still too much unknown about this virus to even begin statistically categorizing individuals, like a heard of cattle, or experimental monkeys... Fact Is: WE ARE ALL GUINEA PIGS.

To think other-wise would be total denial, & ignorance!

It's ALL a Gamble.... & what's good for the goose isn't always good for the gander...
**********************************************

Daryl, & Susan,
Hummmmm, Ya'll both have said things that have intrigued me lately..
**********************************************

Daryl,
I was a responder.... then I went thru those various cancer treatments (including chemo) Then within 10 weeks I relapsed....
Your story just makes me wonder if there is any correlation with the cancer tx,
************************************************

Susan,
You may or may not remember me, but we spoke last year because we both shared this uncommon genotype... & I too (at the time) was concerned as there is such a low percentage of us with this rare type... that there just isn't enough statistical data on it... However I had always been told that 1b was known for faster progression, & more extensive damage than 1a... but that regardless that we have a mixed rare genotype... that it has nothing to do with anything, & that they treat all 1's the same...

Okay..... I don't know about you... but I have never, & am STILL not satisfied with that answer!

I even had one person insinuate last year that in order to have this rare genotype would mean that we had to be infected twice... & that is total "BS"....
The person we got it from could have been infected twice, & had the combo type... or, if we were to give it to somebody... then they would get our rare type..... More than one doc has even told me that it could have MORPHED into this genotype

All I know is that having HEP C is definitely a LIFE ALTERING EXPERIENCE!!!!!
:)

[susan400]

Bon Vivant,

I agree, I could have gotten it from one person, but in my case, I could have been infected twice because of the lifestyle I was leading at that point in time that I got infected.  Us having our strange genotypes doesn't necessarily mean that we'll progress any faster or slower than any other. However, in my case, where I've continued to progress on my biopsies, I just don't feel like I want to wait around.  I wish I could say that treatments have made my fibrosis reverse, they haven't in my case. But, I do feel and my doctors sometimes feel, that the treatments may be keeping me from already being in cirrhosis, or already being on a transplant list.  I don't have autoimmune hepatitis in case anyone may have been curious about that.  I've also been good at sticking to the protocol.  But, the thing is that my previous doctors were cutting me back on meds, both the interferon and the Riba when my WBC's and RBC's fell, instead of giving me Procrit and Neupogen.  My new doctor, a liver specialist was talking to me about the new school of thought on this and wants me to retreat with staying at the higher doses and this time use the Procrit and Neupogen so that possibly I could make some headway.  We'll see....   Susan

[bon_vivant]

They did that to me to last round... it was bad enough to have never been on the proper dosage for my genotype... but then to cut back on top of that was LUDICRUS!!

I went into it this time with a new doc & a clear understanding that cutting back is NOT an option… I hope it doesn’t come to a NEED for the procrit or neupogen… but at least if it does, I already have it arranged!

You probably very well have a good point about treatments keeping you from already being in cirrhosis, or already being on a transplant list … but it sure would have been nice to at least see some reversal…

Also… truthfully (when you think about it) I guess I could have gotten it twice… though highly unlikely…. But I mean none of us REALLY Know how & exactly When we got this dreaded damn virus… I tend to THINK that I got it with my one & only transfusion back in the early 80’s… but I mean I could have gotten it multiple times from nail salons & “what-not”

It’s one of those things that doesn’t really MATTER… but you always wonder about!!!

Hang In There…. & I am so Glad that “Giving Up” is not an option for you!

Treatment may be harsh… but it is certainly WORTH it…  Not Treating SCARES ME to death.

I’ll be holding you “In The Light”
:)