Suicidal

I've reached an emotional low over the past 24-48 hours. I've been reading non-stop about disease progression, HIV/HCV coinfection, retreatment protocols, HIV/HVC Trial data. It all seems hopeless. The thought of adding an additional drug on top of the drugs I just came off of is completely frightening. I had such a horrible time for the 16 weeks I was on...how am I ever going to pull off 48 weeks??  Work is hounding me about disability, sending me form after form. I don't know what to do. I've broken down into unending sobbing.

[charm27]

I did 55 weeks...and feeling quite BAD by month 3. Please dont give up! Take a deep breath and know your going to make it thru this. You will. Im the biggest scaredy-cat and I survived 55 weeks of the misery tour.

YOU WILL TOO.!!! YOU WILL.
I know how dark things become and how small you feel on tx. Its only a feeling..it will pass...the meds are kicking the dragon! PLEASE if I made it so can you.

Crying is OK!!! better it come out then be bottled up inside.
You will see this thru with flying colors. This tx is brutal.
PLEASE dont be this hard on yourself...try to look up and know your trying to help your liver.

Peace
CHARM

[nygirl7]

Call your doctor fast and discuss this with him as a professional.   Seriously your title says Suicidal and I don't know if you are being literal but my husband killed himself shortly after I finished treatment and I don't think it's worth the risk. I never believed him as he was a huge drama queen when he was drunk - but I was wrong.

Interferon should not be bothering you any longer as you've been off for a few weeks so I am thinking you need to take my previous advice and step awy from the forums and go out and breathe in the beautiful air and realize that you might be beating yourself up over nothing.  You don't even know if you have liver damage yet you are totally over concerned about treatments. If you are stage zero or one or even two it might never be a serious threat to your health FOREVER in your lifetime!!!!!!!

(PS We all got those disability papers from our jobs at one time or another.......just fill them out and give them back.  Perhaps right now in your current state it would be better to seek some help and take a break from HepC anyway. God knows a lot of days I would do so if I could and I don't have the disease any longer so it sure isn't that in my life...it's just life being hard).

But, it gets better.  hang in there and breathe.

[Vic1967]

You should listen to Ny girl and get off the computer, stop reading about all the what if's and take a break..  It is good to be knowledgeable and make informed decisions, it's another to spend hours reading all the horror stories on the web!

When I did that, my husband "banned me" from doing so.  Well, he asked ;l.
Anyway Johnny, try to take a break.  You are not those people your reading about.
I know you have had a tough time, but don't lose hope. You're alive right now right? Go enjoy your life and take your options one step at a time.  The meds screw with your brain a little so tell your dr. your feeling depressed.  Get some sun and take some vitamin D too.
Ok? Your worth it aren't you? Take care of yourself. Don't isolate yourself either...OK?!
V

[Bill1954]

Woah; it sounds like you’re allowing yourself to get overwhelmed… slow down for a bit. NYGirl had a good thought; try to give your brain and soul a break and take a bit to enjoy the weather outside.

I understand your concerns; I relapsed myself, along with about half of us in here that have been around for a while. I also realize that HIV coinfection changes the equation a bit… you certainly have more on your plate than some of us.

Don’t let this beat you; by your writing, you’ve got plenty of steam left in you yet. Just by managing your HIV, it shows you’re a fighter; and a survivor as well.

I don’t think there’s any reason you have to find a solution today, this week, or this month. Take a deep breath; and try to get this into perspective… we always tend to demand more of ourselves than we would ever dream of asking of others, you know?

Do you have family or friends to talk with near by?

How much energy is your ID doctor putting into this? Who’s managing the HCV side; do you have a GI doc or a Hepatologist? Is either one of the docs available to speak with if you get overwhelmed like this?

Let us know how we can help; what can we do?

Hang in there, and let us know what we can do—


Bill

[Poobah_Johnny]

I've been recovering at my family's for a few weeks.
I'm going to get off the computer now and go see my 5yo niece.

[charm27]

Please answer us as soon as you possibly can..........Please.
We are all hoping for the best.

Charm

[Vic1967]

Good for you.  You're in my prayers.
Vic

[newleaf09]

Everybody is freaked out when faced with TX.  Wouldn't be normal if you weren't concerned and you had a bad time before.  Stop researching until you have something more specific to research.  I got really freaked out reading about cirrhosis.  Knowing more did not change my biopsy results, just made me feel really anxious and upset.

Seriously consider including an antidepressant when you start the new TX.  They control mood disorder in general (sadness, anger, etc.).  There's nothing to be embarrasssed about for using an antidepressant; it says right on the interferon label that the drug will make you feel bad and you can always stop the AD a month after you finish TX.  Makes all the difference in surviving TX.

If you can wait a little while longer until they come onto the market, treat with a protease inhibitor added in.  Lots of re-treaters have had good responses to them and been able to shorten their TX time to 36 weeks.  If you respond to them quickly enough it may enable a shorter TX time.  That can help your attitude just knowing that there's a possiblity of a shorter TX.

[Willy50]

Hey, you need to understand that depression can become one of the most powerful drivers in ones life...... but that the thinking and rationale is skewed, twisted, myopic.  What you are seeing or feeling this moment is not the world as it actually exists, but a so to speak, worst of all possible worlds point of view.

No one here faults you for sinking into this feeling, losing hope or wanting to give up, but I think many of us would argue that in actuality things may not be as bad as you are now feeling.  Granted, I don't have co-infection, but I do have HCV and I have tons of hope about the treatments coming for both you and me.

First, you may be depressed about not finding data on the PI's..... that is because they are creating it this moment.  They have a system in which they must do these things, and the first thing they focus on is getting the drug approved to treat HCV; they may not need the data on co-infection to be able to get approval.  Make sense?

Second, you and I may have a different view of whether PI's will be effective for co-infection.  you seem pessimistic about the chances of success; I am bullish on you chances with PI's.  In general, if one responds with SOC the chances of clearing and maintaining with triple therapy is very good.  There are very few breakthrus or relapses.

Finally, there is yet another form of TX coming in which a protease inhibitor will be combined with a polymerase inhibitor.  Go to hivanhepatitis.com and type in Inform 1. (I may provide you a link later)  In a paper presented last year I believe that the best response rate they achieved was 88% VL below detection in about 2 weeks with the two PI's; no SOC was used.  Obviously, that was in HCV monoinfected naives, but it gives you an idea that the days of treating with SOC will not be with us forever.  Currently, there are 3 such trials in place and more are on the way.  All that one needs to do is TRY to stay healthy, stay a little more optimistic about your chances.

I don't know about your staging, histology, or HIV status but the HCV issue will become only more and more treatable; more effective, shorter treatment periods and fewer sides.  All of this is coming if you can wait.

Since this depression is currently possibly of greater danger to you than your co-infection I would suggest talking with your friends, doctors or other health care providers about this issue.  I'm writing this to help provide you some hope.

You may also need some help while you wait.

Stay in touch and let people know how you are doing.

best,
Willy

[mj6000]

I know how gripping fear can be. It can take over but it will lessen after you've had some time ro think. I'm sorry you're having such a hard time but things will get better and you will be able to think more clearly. You have time! You may live to be 100, seriously! New advances are being made every day in HepC and HIV. You can always try anti-anxiety medicine and anti-depressants to help. We are all concerned for you.

[copyman]

sometimes reading stuff on the internet can be very depressing. I think it is good you are taking a break and spending some time with family.
Please keep in mind that for all the people that have bad treatment experiences there are many more that treated without any major problems. Most people on these internet forums are here seeking help. There is no need for people who are doing ok on treatment to be here so you are only going to read mostly bad things.
Take care

[Trish77]

I'm a firm believer in allowing yourself to feel all the emotions that come with a situation and then at some point, you heave a big sigh with a "well, it is what it is" and decide what kind of attitude you need to have to deal with your reality.

The thing is ... you don't KNOW what your reality is.  It could be better than you think .. or it could be as serious as you fear.  You might as well be dealing in realities, yes?  

As for PI's, don't focus so much on the trials.  Focus on the fact that PI's are not that far off and have the potential to make treatment shorter and much more worthwhile and effective.  If you knew your chance of success was more in the 85% range, I bet that 48 weeks would look a whole lot better.  And an RVR on a PI .. well...virtually unstoppable.  So .. you are far from out of options, you've just had your emotional a$$ kicked with this round of treatment not working and you need to take time to regroup, grieve for a time and then rebound by focusing on possibilities again and they DO definitely exist.

Get the biopsy.  Just do one thing before you get the biopsy.  Assure yourself that you will handle whatever comes, you're in good company on this board and you will not have to handle it alone.  Get yourself ready and then do the biopsy.  If it's serious, you'll handle it.  If it's not .... well, you'll have a helluva celebration

Either way....from the looks of this thread you will definitely have support.

You *will* rebound emotionally from this and you *can*.

Trish

[Poobah_Johnny]

I'm so embarrassed... I've isolated myself for months. I've overwhelmed myself with statistics and information. I'm still angry that my first treatment was so difficult on me and did not work. I'm terrified of more treatment in the future. I blame myself for contracting HCV due to my own irresponsible behavior. I feel little confidence in my future - medically, professionally, personally. The thought of "I can't go on" has never been this loud.

Behind our aliases are real people who have suffered hardships and tragedy and lost loved ones. I appreciate so many of you sharing your stories with me. Our journeys are each unique yet our journeys share similarities. I've found that people in my 'real' world love and care about me, but cannot truly understand my situation the way you guys do.

[Tippyclubb]

My heart goes out to you.  

[RCM829]

Hi Johnny,
I cannot possibly add anything to the wonderful  responses you have already received. But I wanted you to know I'm rooting for you.
C'mon, one foot in front of the other my friend. This too shall pass....

[susan400]

Please, please, don't do it.  I have been at the lowest of the low's many times so, I know how sometimes the depression feelings can just come over you like a big, huge, dark cloud and that it just seems to swallow you up..., but if you can just call somebody, or think of something wonderful, and get through these bad thoughts, then I promise you, it will be better.  Sometimes, it does take antidepressants and/or a good therapist, I won't lie to you there.  Sometimes, for me, all it takes is a bunch of friends, some good chocolate, a good movie, talking to my mom, or my son, or just getting out of the house and sometimes, it takes a good long cry and then, I'm better after that.  But, please, don't do it!  If none of these suggestions will help you to feel better albeit, temporarily, call 911 and get immediate help for these feelings!!  Please!  I can't speak for everybody on these boards, but, I can speak for me and I do care.  Susan400

[merryBe]

Don't feel alone John, it's a long road from here to sanity but we can get there one step at a time.  I learned during 88 weeks of treatment that one day, and sometimes one minute at a time was enough to deal with. Forget the trials, forget all the stats...
like you I read everything, absorbed everything, tried everything...in the end I relapsed and the thing that kept me sane was to do what the doctor ordered....remove myself from the forums, stop eating and sleeping HCV and what to do next, and take a mental holiday from all of it.  To a certain extent that seemed counter productive, I mean, what if I missed some new trial...but I resloved to try it...and it probably saved me from total meltdown.  My garden was my therapy, and my house,,,I painted, papered, planted and basically got back to living...and only when the initial sorrow had passed did I return to research,
Don't know if this will help you, but you have your family, and that's priceless!!
See what you can begin to do to help out with them, and get a hobby, read something you always wanted to read, go to your favorite beach or mountain, take the class you always wished to take, something, anything...I'm serious.  

I think sometimes the fear of what may come is what makes us sicker before we would otherwise have become sick...I've seen this happen to folks. The best remedy is not to get too caught up in what may eventually happen because eventually may be many many years away for you still. Try to remind yourself of this, please.
People live 30 plus years with HIV, and stage 4 LD can last 5-15 years, so the end is not yet my friend.
mb

[portann]

Hi there,

Sending you my warmest wishes and hoping that you will reach out to the loved ones you mention. It's true they may not understand what you've been through in the same way the forum does but they're the ones who can see you, touch you and feel you and they will come through for you, if you ask them.

But you have to ASK them. And that's the really hard part for most people and maybe you, too.  I'm a very bad 'asker' but sometimes when I'm up against a wall, I'm amazed at people's kindness and generosity and caring. Only if I ASK, though.

Try it, just pick up the phone and call someone you know and get together. ASK. Tomorrow can be good, even if today is bleak.

Best wishes,
Susan

[DD9th]

Don't beat yourself up.  I too, was young and dumb once upon a time, and I was hard on myself too.  But it didn't help the here and now.  I had to get help for my emotional state when I started.  It was like night and day once the anti-depressants kicked in.  Please talk to your doctor about these feelings and my heart goes out to you.

[can-do-man]

Hang in there guy, things will work out just fine. We have all done crazy things. Wishing you the best.

can