concern about helpfulness of forums

I understand that these forums are meant as a support for people with Hep C but I have one concern.

Of course the ultimate information should come from a doctor that you trust and who knows your health history. Sometimes these kind of forums can feed into your fears although they are meant to be helpful. People are often quite eager to predict dire warnings and scary outcomes, trying to be helpful of course. As it says in the disclaimer, this is not meant to substitute for medical advice.  I hope people don't rely too much on discussion forums to make the crucial decisions in their lives.

I am not sure if it is going to help a sixty year old  who discovers his liver is in stage 3 or 4 and he is not a good candidate for medication. Sometimes we have to bite the bullet and move on. Everyone will die of something sooner or later.

Of course a younger person may have more options and be willing to go to any lengths which is understandable.

The important thing is to live healthy and get on with your life the best you can and also know that many infected people are living productive and fulfilling lives well into their sixties (and probably beyond) with few or no symptoms. Go with your gut instinct and a doctor you trust to make the decisions that are best for you.

[Ofretta]

Post Script:

I'm not ungrateful to those who replied and I now have an appointment with a Gastro Soecialist. I just found myself obsessing a bit after I posted here.  Before I decide on a liver biopsy I will find out my genotype first. Any further health decisions I will base on my own life style. I don't want to make Hep C the focus of my life from now on.

[Ella Mackenzie]

I agree with you about trusting your doctor with health issues.  Also agree that many people can't or don't need treatment and have friends who are in their sixties living healthy lives with Hep C.

What  I have experienced on this  forum  is that when someone asks a question that can only be answered by their doctor, people on the forum quite often, if not always, tell that person to call their doctor.

What I have found here is unending support while going through treatment and tons of information about this disease. People have suggested medications for the various side effects that work for them and then I go with that information to my doctor and we discuss it.

When my WBC were very low, I called my liver doctor and he didn't seem concerned so I posted my numbers on the forum and several people told me to call him again. Instead, I called my hematologist with the numbers and he insisted that I come down right away for a neupogen shot. I was dangerously close to getting an infection.  For whtaever reason, doc #1 didn't catch it.

  Many studies show that those who have a disease or who are going through treatment do better when they have support from others who are going through the same thing. So whether or not you are going through treatment, this forum is a great place to get support if you want and to hang out with others who know what you are going through.

[hph5477]

Ella, you said it well.  I ditto what you have stated.

Ofretta, I felt some negative vibes from your message.  Hope that's not really the case.  Personally, I have gained so much valuable info from this forum.  It's nice to know that whatever I'm going through or questioning that someone else has been there/done that and can share their experiences.

Anyway, 60's is not old by any means.  My husband is 68 (turns 69 next month) and is, by far, the most active person I know.  He rides a bike approx 200 miles per week along with walking, taking care of the house, yard, and pool, and many, many other things.  I am younger and have trouble keeping up with him.
And, yes, everyone dies of something but why not stay as healthy as possible and live a very long and productive life?  That's our plans.

Anyway, good luck to you and your future.  Hope I didn't overstep my bounds.

[new-sojourn]

What do you mean you're not a good canidate for treatment?  The criteria I know of is that  a person has to have Hepatitis C.  And you qualify.  In fact, if you have a stage 3-4(fibrosis or cirrhosis?) you are over qualified.

There used to be an age discrimination about treatment, b/that's ridiculous.  What if you live to be 85 or 94 like Regan.  The chances of developing the full blown complications of chronic Hepatitis C are almost 100%.

Beleive me, an End Stage Liver Disease person who successfully treated a 37yr old transfused infection after complete liver failure, they are no fun.  Heptic encephalpathy, ascitis, varicies are not fun nor funny.

I, too, ran into the age discrimination-57-and the "you're too sick to treat" discrimination b/I tx'ed and cl'ed and had an easy time of it.  B/b/c my liver is so destroyed by the disease, I have to live a very dif life style.  Most of the complications can now prove fatal.  Anything can be potentially dangerous now.

The pt I'm making is:  w/o tx I would be dead.  My 1st MD just sent me home to die.  The 2nd one gave me back my life thru tx.

BTW:  I found this forum after I had fin 24wks of tx so my decisions were made entirely independantly.

[Tony-z]

Just wondering, <B>Ofretta</B> "not trying to offend". Who are you trying to convince with some of you points of view??


               TonyZ

[DonL]

I want to echo the other's comments. You will find no end of discussion on this board, and certainly there are people here who have had every Hep C and treatment side effect and then some. Despite the arguments that erupt from time to time, everyone here is trying to be supportive and sympathetic and offer the results of their research and personal experience.

None of this should substitute for a doctor's advice. However, many of us have found that the better educated we are (to the point of arriving at the dr's with a list of questions), the better advice we recieve from our dr. Dr's make mistakes like all of us and sometimes your knowledge can avert a problem or suggest an alternative. New Soujourn's observation that you are a candidate for treatment applies here.

So take the advice, dire warnings and all, in the spirit it is offered--no one is trying to scare people, no matter how young or old the person may be, only to provide information. And, caveat emptor (let the buyer beware) applies here as well--gather your information, discuss it with your doctor, and make your own informed decision. With any serious illness or treatment, knowledge IS power.

Be well.

[Ofretta]

No offence hph 5477 and everyone!!

I understand where you are coming from. Everyone is different and must make decisions based on their own circumstance. Support forums aren't for everyone. As I said, I found myself obsessing a bit. I'm ok now.

Newsojourn, I am in my fifties still and do not know anything yet about the state of my liver. My stomach seems to be settllng down with Pantaloc and I am avoiding lactose to which I may have developed an intolerance too. All I know is that I have been very physically fit up until now with no symptoms that I have been aware of and I probably have had this for thirty or more years.( My former husband found out he had it.He is 62 and doing fine without meds and his liver is ok.) I am planning to go on for at least another twenty years doing the same things I have been doing. If I am a good candidate for medication - I would consider it.

I have learned some good stuff here and thank you but I am probably only a short term discussion forum participant.  Best to all.

[Ofretta]

Not trying to convince. Just "my own" observation and comment, trying to figure things things out from my own perspective. I did have a "negative" thought about it all (just one) but I've now thought it out further and am ok with it all.

[couchpotato]

To treat or not treat your illness is a personal choice. I answered your post below and would really like to know which province you live in that you are not offered tx because you are not ill enough. That sounds nuts to me.

[Amerabrit]

Dx is such a scary thing, that much we can all relate to.  The more info you have, the better able you will be to discuss tx options with your Dr.  If you decide to stay on the Forum you will find you may relate more to some people that others; just as in any walk of life so take the information that helps you and leave the rest.  This is a time in your life when you need to do whatever makes Dx and/or Tx helpful to you.  If this Forum causes you stress and/or anxiety then it's not helpful?  There are no obligations here, stop by if you need help, support or information, just do whatever you need to in order to take care of yourself - you will always be welcome:) I wish you the best of luck with your tx decisions.
Kindest regards to you..

[cuteus]

I came to the forum back in march 2003, absorbed what I needed to  help make my decissions about TX and left. Until December when I felt I needed emotional support as I experienced the ups and downs of the meds.
The smart shopper like yourself will take the info, research it and apply as needed. the naive and ignorant might not do the same, unfortunately. that person will probably behave the same on or offline, so there is not much support groups can do for them.  
Please let us know of the results of any further tests you might be prescribed by the GI, and any questions you might have as a result of the consult and tests results. Use the forum PRN, most here seem to do so. It might help with your fears.
GL

[bystander2002]

whether you decide to do tx or not is a decision between you and your doc. Best advice is find a doc you trust, one who knows about your medical history and is exp in treating hcv.

Your medical history matters alot
(the advice someone else put here about all that's reqired is to have hcv is silly--- other (med.) things do matter

you can learn alot coming to these forums, but dont let anyone pigeonhole you or generalize you into one big group, one size fits all advice.

[Califia]

Just for your information, my dear friend is 59 and in her six month of treatment, and is looking younger every day, in spite of tx effects.   Beating back the virus has been rejuvenating.

[humbled1]

I applaud you for your post, I did not pick up on any negativity, however some people see things differently than others. I feel there is little or no support here for anyone chosing not to treat such as myself, no one wants to hear that you are feeling better without tx ,only seems they want to hear how bad one feels because of tx.I have however learned alot on this forum & do appreciate some of the useful information & links. I am not going for longevity but rather quality of life. Yes we are immortal aren`t we .As a single Mom of a 13 yr. old that lost his Father at age 3, I don`t want him to watch me vegitate on the couch moaning & groaning, because of tx sides. I want to enjoy my time with my child which means being active & enjoying our time together. I will refrain from posting again since I know my views are very different than most here.

[Tony-z]

I agree with the majority, that in any major disease like Hep-C, we need to take a look at all aspects, medical and lifestyle.
Dr are humans with degree's and make mistakes every day.
I belive that the choice on how one desides what to do about there circumstance should be a completly individual one.
This forum is full of people concerned for the welfare of other's and are offering good advise and concerns, many times from experiance.

I am glad I didnt offend you that was not my intention at all.

            God Bless,

              TonyZ

PS. Brain fog entered while thinking hope it makes since.

[new-sojourn]

Just remember that you are the carrier of an infectious disease and inform all your 'people', ie dentists, manicurists, hair person, etc.  Since we don't know how its always transmitted, be sure to be ever vigilant so you don't infect your child or other loved ones.

I didn't like the idea of always being infectious and potentially passing it on.  It made me feel icky that I was a viral incubator and posing a public health treat if I were in an accident or catastrophy.

Since I got my hep c thru a transfusion, I'm well aware that we can't predict the future.  And I didn't want to complicate any unseen problems w/my disease blood and body.

[DonL]

I don't think it's quite fair or accurate to say the forum is against people deciding not to treat. We do try to allay people's fears about sx and to provide information about tx since most of us have chosen to treat. Since most of us are in tx, we tend to focus on it.

There is a strong antipathy against people who have shown up regularly to tout some "natural" or "organic" method of "curing" HepC, and especially those who try to talk people out of treating in favor of some natural remedy that they just happen to provide. (Not saying you are--just that it happens frequently.) Many here use herbs and other natural remedies to alleviate symptoms and help their liver, but these don't kill viruses.

Choosing to treat is a serious decision and one that will affect your life for a year or more. If you haven't, I would suggest getting a Viral Load and biopsy so that you know where you stand. HepC can be a slow moving or fast moving disease, and if your tests show relatively little progression, you may very well choose to wait.

Stick around, though, and put in your two cents. Some of us are pretty vocal and thin-skinned and quick to argue, but, in the words of that noted rock philosopher, Ricky Nelson, "you can't please everyone so you've got to please yourself."

[Ofretta]

Thank you for your post!  I believe that it is an individual decision also and I do notice that these forums do tend to deal more with those who are deciding to medicate. I give them credit for their choice but my inclination is the same as yours. I think quality of life is most important and for those who do not wish to medicate for whatever reason - perhaps they are not experiencing the symptoms or their infection continues to remain slow moving.  Side effects are a great fear of mine, blindness, nerve damage etc. and in my case may not be worth the risk. I will know more anyway in January of 2005.  That's how long it will be before I see a Specialist and I have decided not to worry until then and to continue on enjoying my life as before.

[Amerabrit]

"no one wants to hear that you are feeling better without tx ,only seems they want to hear how bad one feels because of tx"

Blanket statements like that are just so obnoxious to read!

If I felt I could live the rest of my life, sympton free of HCV without treating, you can safely bet I would choose not to tx.   I am very happy for you that you are well and feeling that way without tx and furthermore confident in your decision.  

If you are truly refraining from posting here because you feel your views are different from most people posting, then you are a coward.  Believe me, to undergo tx takes a lot of courage and if anyone here sounds as though they are depressed and/or, in pain it is because they are either depressed or in pain, or worse - both!  

Please remember where you are:  This is an HCV support Forum!

To treat or not is a personal decision and given your posted circumstances I can fully understand why you choose not to undergo tx.  Cuteous is a single mother, please go back and read a few of her posts, every day is a physical struggle for her but she does it and still manages to be kind and supportive of others here.  There are many more like Cuteous as there must be many more like you who choose not to treat.  Instead of taking from those who choose to give freely of their time and energy to help others but then in the same post put them down for being human and struggling with pain and depression, why not post to those people like yourself who have chosen not to treat and offer them support and encouragement with their decisions.  Giving can feel so much better than taking, why don't you give it a try, you may like it:).

I am doing relatively well on tx and I hate to read of friends here suffering while trying to clear HCV from their bodies.

If you do decide to come back and post you will be welcomed, however, please re-read your statements before hitting that "POST COMMENT" button.
Whatever the future holds for you, I wish you the best possible outcome and while you may find that hard to believe, I mean it.

[Gidget234]

I, too, feel that most people on this forum are not very understanding of people who decide not to treat.  Their minds seem to be closed to anyone deciding quality of life is more important than quantity.  I recently had a Fibrosure test (a non-invasive alternative to liver biopsy) and was advised that because I have minimal liver fibrosis, I don't have to treat at this time.  I was also advised to continue to monitor my hep by blood tests and another Fibrosure test in a year to see if it's getting any worse. I don't see anyone starting treatment,with all of its potentially horrible side effects (blindness, loss of hearing, hair loss, anemia, nausea, weakness, depression, possible further liver damage) when said treatment is not necessary. Whether that will be true a year from now, I don't know.
I've had no symptoms with my hep, only discovered it with a routine blood test a year ago. As far as I know, the only way I could have gotten it is with a blood transfusion over 43 years ago.
Anyway, continue to do what you feel is right and don't let anyone pressure you into anything you don't feel comfortable with.  Remember it's your body and your decision.
Gidget

[Galen]

I read somewhere that only 10% of those with HCV treat.  That follows my own experience.  Since "coming out of the closet" with Hep C I have found out about quite a few people I already knew who have the disease.  I am one of only two who attempted treatment.  I say attempted because the other person failed to have any viral reduction after 12 weeks and stopped tx.  Those who seek to treat also seem to be the ones who seek support in that decision.  That would account for the overwhelming numbers here who do treat vs non-tx.

[Ambush]

"I don't see anyone starting treatment,with all of its potentially horrible side effects (blindness, loss of hearing, hair loss, anemia, nausea, weakness, depression, possible further liver damage) when said treatment is not necessary."

Not for nuthin........I was told by my doctor that I didn't have to treat ~ and I recently finished 60 weeks.  Hopefully we are all capable of making our own decisions.

I, for one, totally understand folks who decide not to treat.

ambush :)

[GulfCoast]

Hi Ofretta,
I understand where you're coming from and understand the "quality of Life" issue in deciding whether to tx. When I was diagnosed I was stunned as I have always been very active, never ill and able to outwork people half my age.

My liver levels were good and biopsy showed very minimal damage to my liver. I spent a lot of time debating whether to treat as I felt fine.

I didn't know about this forum so all my research was at the library. My first searchs online were to some very negative sites (not this one) so I was very freaked out about tx and possible sx.

However, all my research showed that the only way to eradicate this virus was through treatment. I also did not want to continue feeling like a carrier of a chronic viral disease. I had read that progression of the disease was non-linear and felt treatment when I was in good health was a better option than waiting till more serious damage occurred.

i hope that everything works out well for you. Stay in close contact with your doc and live a healthy lifestyle. All health decisions are totally personal and whatever you decide is is yours to make.

On the last note, I'm a 2b, on 24 weeks tx and my sx have been very mild. I believe on a earlier post someone mentions that 10% will have terrible sx, 10% will have none and the rest of us will fall somewhere in the middle. I'm in week 10/24 and haven't missed any work and still maintain my daily routines (knock on wood).
Peace and wishing you all the best - Gulfcoast

[Lucky Lou]

I agree with most of what has been said. This forum has a wealth of information on it. When I was diagnosed 4 weeks ago I found more PRACTICAL information here than anywhere I looked. But as with all things it has to be weighed. Yes the members here are not doctors, and most doctors are not HEPC patients. It is impossible to get from  a doctor what can be received here the same as I can not find out from a male gynecologist what is like to be a women. He doesn

[Ofretta]

This is perfect. Lots of debate and different opinions.

As for health problems - many are living with herpes, cancers in remission, mental illnesses that are incurable, and somehow carry on knowing that it wil be with them till they die. Infectious diseases are on the rise everywhere and people must be on the alert without becoming too paranoid.

I wonder how many treated Hep C cases are actually cured. What is the percentage?

I am not sure I need to advertise the fact that I may be Hep C positive as someone advised here (all dentists wear rubber gloves as do health care workers.) I think that may only add to your fear and feeling of being apart and diseased.  Of course you must be careful, razors, toothbrushes etc.  I won't call myself a Hepper. To me it is too much of a label - like calling yourself an alcoholic. Having an illness should not define you and I believe in discretion.

However, if you decide to tx and can get rid of the virus then that must be a great feeling.

[jonihs]

This forum saved my life, twice now, so I am very prejudiced. But I wanted to tell you a good example of why we sometimes need more info than what doctors have available. First of all, doctors are much too busy treating patients to do the research that the people here. They don't have as much invested in finding answers as the people here. My first G.I. saved my life and I will forever be grateful to him. However, he told me that I couldn't treat because I have cirrhosis. I found this forum a couple of months later and it was suggested to me that I get a 2nd opinion, and I was given links to studies that had just been completed that showed that it was not only possible to treat, that it was encouraging doctors to treat. So I treated and 3 months post treatment, am still undetectable. The second time this forum saved my life was last week when I came on to share a gel that I had found that really helped my back pain. I was told that it has an ingredient that is not safe for someone w/ the severe liver damage that I have. And by the way, my first doctor was offended that I got a 2nd opinion and decided to treat.

[DonL]

Just as an FYI, I was diagnosed in 89 (non-A, non-B hep), had a biopsy in 95 that showed minimal damage. I decided against tx at that time because I had a 20% chance of cure.

After another biopsy in 2000 that showed the disease was progressing (slowly), I decided to treat. My chances at starting were 50%, a damn sight better.

Had I come here in 95 or 99, I might very well have felt too scared about the tx to ever start. As it was, I made the decision to treat based on my desire to be cured. Only then did I research the sx in detail (ass-backwards, I know). It is not a year I would want to relive, but some good came out of it and my sx have been manageable. I have been undetectable since #12 (at 46/48 now) so I remain hopeful it will have been worthwhile.

You make your decisions in this life as best you can and ultimately the choice is your own.