Why Those Not on Tx Need Support - One Perspective

[GwithHepC]

<B><A href="http://dictionary.reference.com/search?q=support">DEFINITION OF SUPPORT</a></b>



<B>WHY THOSE NOT ON TX NEED SUPPORT:</b>

It was recently asked in another thread what sort of support would someone who is "happy, healthy, asymptomatic and content in their decission (to not treat)" need?  I am not trying to be sarcastic, but what right does anyone have to ask this question of another with a chronic illness?   Why should anyone with Hepatitis C, or any chronic illness, have to justify their need for support?

<B>MY ANSWER (as one not on tx):</b> They shouldn't!  Anyone who has a chronic illness needs support for a multitude of reasons.  

Speaking for myself, I have a need to share in the experiences, feelings and thoughts of others infected with a similar illness, whether treating or not.  Having a chronic illness is an emotional burden.  It is not something that can or should be forgotten or taken lightly, even in the absence of symptoms. Just because someone thinks it is the right decision for them to wait does not mean the waiting in and of itself is not stressful.  Obviously I have determined the benefits of waiting at the moment outweigh the benefits of treating, but I still need support while I wait, and so I suspect, do others who have made a similar decision.

(CONTINUED BELOW)

[GwithHepC]

But since it has been asked, just some of the reasons I visit this forum are:
I am interested in reading about the success stories of those who tx because it gives me hope.  I am also interested in reading about those who have suffered long-term problems from the tx because that is important to take into consideration.  I am interested in hearing the advice that was given to others by their doctors, particularly from those whose doctors specialize in hepatitis C.  I do think it is very important to state the credentials of your doctor since there are too many run of the mill GI's without a clue about hepatitis c - when a doctor who has a lot of <I>clinical</i> experience with this disease makes a particular recommendation, it carries a lot more weight than a similar recommendation from a GI who has never treated or has only treated a few.  I am interested in the experiences of other's when they reveal to employers, family, or friends that they have hepatitis C.  I would like to know what others, treating or not, have tried whether it be supplements, exercise, meditation, etc., that has helped them live with a chronic illness.  I am interested in hearing about nutritional advice for people with a chronic illness so that I might maintain my health.

The above reasons fill a need that I, as a person with a chronic illness, have, and when any needs are fulfilled, that is providing support.

Having Hepatitis C, thankfully, is not like having cancer.  It does <B>NOT</b> carry the same urgency to treat.  A 10% - 15% chance of a cure is definitely worth the toxic side effects of a medication if you know you have an illness, like cancer, that <B>WILL</b> kill you in the near future.  There is no comparison between cancer and hepatitis c.

[GwithHepC]

<B>AND ON A SEPARATE NOTE:</b>
I understand and respect fully the decision of those who opted for tx, but I wonder how those who decided to tx would feel if the reasons I gave for not treating were as follows:

1. I don't want to be reactionary; after all, this is a very slow moving disease.  I have enough control of my emotions to realize that the desire to get rid of this disease at all costs should be tempered by logically weighing all the pros and cons, not the least of which is the consideration of the likelihood of significantly progressing before better treatments are approved.
2. I am not naive.  I am not going to be brainwashed by all these pharmaceutical companies and their clever advertising into rushing into something that will fatten their wallets and possibly make me sicker than I would be without treating, all for a 50% chance of clearing.  They have got their hooks into doctors; many doctors are educated by pharmaceutical dogma and influenced by the salesmanship of the pharmaceutical companies.
3. I am smart enough to realize just how toxic these medications are and that they are nothing to be taken lightly.
4. I am not going to be scared into treating by unrealistic and fanciful images of the virus eating at my liver 24/7 when this is not how the virus actually works - it is your immune systems response to the virus that causes any damage, not the virus itself.
5. I am not going to run away from the challenge to live healthier and take responsibility for everything I ingest, for exercising, not smoking, not drinking, etc.
  

Wouldn't I be implying by the above, whether intentionally or not, that those who do decide to tx are reactionary, naive, stupid, scared, and are running away from taking responsibility for making lifestyle changes?  

<B>ONE LAST THING</b>
Indiana was gracious enough recently to provide me with his email address and invite me to write him so that the forum can remain clear of any personal attacks.  I am taking Indiana's lead and have listed my email address with MedHelp.  

[GwithHepC]

Thank you.  I do appreciate that.

G

[hepcbilly]

Thanks, your words are beautiful and delivered perfectly. Every time my husbands temporary choices are assulted I hope I can remember what you have just presented.

[GwithHepC]

You're welcome.  I think you're husband will be just fine, particularly because he has you.  I wish I had a partner who cared enough about me to research this illness the way you have for your husband.  The love, caring and devotion you obviously have for him, and he for you, is truly inspirational.

G

[hepcbilly]

Thanks!

[oldhippiechick67]

Bravo!  well said gwithhepc!  I have you listed on my webpage if that is okay with you, as "waiting to start" but I might try to copy your thoughts posted here and link them to your name...although I have had my troubles with linking!!  I need what state you are in also if you care to let me post it.
Hepcbilly - I need your info also, what meds you are on and what week you are at.  Thanks!   OHC/auggie

[oldhippiechick67]

Hate to butt in on a thread but I am gonna anyways....
Last year I got approved for life insurance in Feb.  In June I was diagnosed with Hep C by my PCP...what do I do now?? been thinking "cool I am covered!" but now if I did die from something else, and they find I had/tx for Hep C would that nil and void my insurance?  I would think it would.  Hummmmmm?  I wanted to get a lower rate too  since I quit smoking a yr ago, and they want a pee sample.  I have worries they will find the peg, riba etc in the drug screening.  but?  ugh what to do.  
thanks for any input!  OHC/auggie

[pjxak]

In the interest of presenting both points of view from the medical experts, please check out this article on the debate about when to treat.
http://www.medicalcrossfire.com/debate_archive/2002/Feb02/mc02-hep.pdf

[new-sojourn]

Most people tx b/c they are way sick.  Those who are not sick onto death don't feel the urgency.  My mom and I just figured out that I may have been infected since 1967, just re-infected in '79 and '85.

If I had known I had hep c when I was 1st infected, nevermind the subsequence re-infections, I can guarrente I would have made all nec lifestyle changes and would not be ESLD-tx or no tx.

And my life would have played out radically differently.

B/I will say this, people who don't tx will never know true health, so will never get everything out of life.  It will effect you as it infects you!!!

[Amerabrit]

Good luck with your insurance issues.  I don't know the answer but will be watching with interest, for the responses you will surely receive.
Stay strong.

[GwithHepC]

OHC:

I am in New York City.  Thanks for keeping your website up to date.  Can you provide the link again?  It's been a while since I visited.

I wish I had some answers for you about insurance, but I have no idea.  If I run across some information, I will send it your way.


pjxak:

Thanks for the link.  I have read that debate before; it's a good one.

G

[cuteus]

We all know who posted the addressed question in this thread, so I will get right to it. It was posted motivated by a regular complain that this forum is tx oriented and those not in tx don't feel part of the group. That was it.
Lately, I've noticed that everytime I type "those with hcv symtoms OR not in tx", it is interpreted to be only the latter.  The first part is completely ignored.  
That statement it is NOT to imply that those not on TX need to justify, ad nauseaum, to those on tx.  I for one have read every reason. We have made our decissions.
We should ALL post the reasons for our choices when a new person is inquiring about to tx or not, because it presents issues they might not have considered yet.
You do not need  to justify your choice and no one is asking you to.  These are choices for which we are accepting possible consequences,(those on or not on TX ).
When I make that statement, please do not TRANSLATE to meaning; only those on TX can post here.
It is only those not in tx, that choose to post with snippy remarks which will trigger an emotional response, and That is their only "contribution" that I find an issue with. NOTHING else.  I will continue to have an issue with that, and it has nothing to do with their choice not to tx.

Gwithhepc; you have made a grueling decission for you and your daughter, and you have enlightened me as to what needs are been filled for you here.  That is a welcome contribution.
I can't recall if you ever made snippy, flaming remarks so I have no issue with you personally. Your point is clearly expressed without the added "fire feeding" comments.  

You do realize that there is a limitation for those not on tx OR hcv symptoms, in forums like this. I don't know if it is good or bad, but again, it is kind of hard for us to offer:"I am glad you have no aches and are feeling so healthy today" support when we feel like ****....I know you understand.

Hey you and I are neighbors, if you want, you and your 13yr old and I and my 14yr old can meet and see "Moving Out" or something.
Just a thought.

Be well

[oldhippiechick67]

Thanks!  Its www.geocities.com/auggieaz

[grouchyOldGuy]

Hi everybody, yeah lots of good stuff on here and real cool people too! Misery loves company in a real good way on here and what a great way to communicate with each other ..man I love it and all you heppers sound so much like me on any given day that it's a pleasure to be able to be a part of it. Support is all good regardless of why and on here it's about HCV and making the best of a bad situation! But actually getting to do it with people that know what it's like is a major bonus.....way better than a doctor that has never had the disease, or family that don't want you to have it! So many thanks and stay strong and keep hangin in there.....laters

[oldhippiechick67]

Still waiting for someone to answer my life insurance question, do I tell um or just hope for the best?  I posted up above about it.  All the bickering going on I am afraid no one will see it.

[honey1616]

You will be covered because you already had insurance and then found out you had hep c so that won't be a problem.  Don't go for the lower rate right now though because the meds will show up...Just leave everything as is until you are off the meds..

[totemman]

Thank you for your eloquent story. I also have decided not to treat, your words are refreshing.

totemman

[willing]

don't know much about life insurance, next to nothing in fact, but I'm laboring under the illusion that it's  a contract. You pay the premiums and they agree to cough up money if you die. Unless the form of death is explicitly excluded by the terms of contract (eg suicide) you are covered. As long as you pay your premium you can go (almost) any way way you choose.

[layla]

Personally I would not change my coverage (unless comfimed with my co.). Most of the time with insurance if your covered at dx you can keep it as is, but any changes or lapses after dx often affect that.  You could ask you insurance company. I would also bet there are laws on this so they can't just drop anyone when they get sick. It's the changes or lapses in coverage that usually get people cancelled out. Nice day...LL

[DonL]

I waited for years to treat. I was not very symptomatic and once I got over the initial panic, tended to forget it. I still drank on occaision, but never heavily. When my last bx showed that the disease was progressing, although slowly, my wife and I reasoned that now was a good time to treat while I was still relatively healthy.

I fully support anyone's right to treat or to wait. I believe that herbs, not drinking, healthy choices, etc. can help the liver, but not cure it. I take equal offence at someone telling a non-tx-er they are wrong to wait as I do a non-tx-er telling me I am wrong to treat. And if someone is posting because of a spouse, child, parent, or friend with Hep C, I believe they are equally welcome here.

My dr echoed many when he said that Hep C will <b>probably</b> not kill me. As a man, I know that I will get prostate cancer if I live long enough, but that doesn't mean I am removing my prostate anytime soon. Risks are everywhere and we all make choices.

Keep in mind that many of us are more easily angered than normal. Remember not to feed the trolls and encourage the kids to play nice in the sandbox.

[layla]

Oh yeah... I forgot I did try to increase my life insurance just before dx and they asked for new labs but I was dx before they came to take them so I just left it as was since they can't refuse me on that policy. LL

[new-sojourn]

I'm sure, in this age of the computers and easy cross referencing, the insurance co knows about the hep c.  And I would bet the insurance company would love to have a reason to disqualify you, which they can do @ their discration if the chance arises.  So I would be very careful how an inquiry would be worded.  Its kinda like stickin' a stick in a hornet's nest!

[the poor woman]

Hi, sweetie.

You knew I'd post (hunt and peck; computer illiteratacy notwithstandinding).  I'm obsessed. And, yes, the garden was a mess but when you left for work, I went outside and choppped down the bushes, pulled up the perennials and tossed some corn seeds onto the lawn.  Would you mind sleeping outside a few weeks so you can chase the squirrels away until it comes up?

I know you don't need any help here, but, I just want you to know that I think you're a pretty incredible guy.

You folks here have been really important to us during the last year and almost a half.  I would read from time to time what Scott was spending so much time on and realized the only place he could whine and complain was here because he was trying to be "O.K." for me and the kids at home.  Little did he know that I knew he was going through hell and putting us through it, too.
Many times when he was crying about the lampshade being crooked or screaming about the dust that wasn't there, I would leave and go by the river parkway and cry and pray.  He always said sorry later and took me out for surf and turf(one of the benefits of this horrible treatment).  I could never help him so I'd just sit and let him go through it.  He would say no one understands unless they've been through it.  One time, after many hours of riba rage and crying he said he just needed a hug but he didn,t want to be touched(????????????) I just sat and cried with him.

You guys KNOW how to hug without ever touching each other.  Thank you for helping us.

Yes, treating is bad.  I barely made it.  I am in therapy (we have alot of other stresses,too).  But, he was told 5-15 years and then-worse (transplant, cancer, cirrhosis, etc).  We were terrified every day for almost two years about 'something' to do with HCV.  Except he got good news (EVR, good tests etc).  He has fought hard.  He has been to hell.  And he and I would do it again -please, please pray we don't have to. I need him, the kids need him and he has things to do yet that he knows now he doesn't have the luxury of putting off forever.  We have plans.
The kids are 17 and 18.  We have been through alot over the years (too much) and now when eveything you hope to do when they are on there own, I don't want to miss out.  

You don't make plans and then treat.  You treat and then make plans.  Some of you are are early dx or stage 1 or type 2.
You should treat now and 'if' it doesn't work, then try 'better living and better eating' to stave off further damage.  But why wait when it's easier now and you just might be done with it?  Do you want to get like us?  Fighting it now after all the other **** we've been through in life only to find out now that we may not even get a chance to make up to each other for all the hurt we've caused each other?  Taking on this battle when we finally are old enough and tired enough to just rest and enjoy each other (or life, in general)?  

I'M pro treatment because of Scott.  I want him to live.
Please don't be afraid.  I thought It would never end and now we're five shots from done (if he isn't secretly hoarding his half empties for MORE extended treatment).  And, yes, it is hard.  But you will be able to handle it with heavenly help and boards like this.  You and your Drs. will know when it's time.

P.S. One of you thought that Scott was the "enemy" that is haunting Thand-out.  She said it was a woman.  I can assure you that Scott is a man.  I always thought he looks like a young Mel Gibson from the Mad Max days only taller (although he now looks like a young Mel who's aged 40 years and has cracked sores in the corners of his mouth, red rash on his face and skin as dry as my heels of my feet).  We get romantic by reading MKAndrews until the mood hits and then run off to the bedroom to scatch his rash and rub cream all over him.  You girls may flirt all you want with Scott.  I gaurantee he will be flattered and then fall asleep reading your post.    

I love you, honey.  Be well.