Stay positve and all wil be fine? Get real

[Sam Hall]

I'm agreat proponent of positive attitude and how strong it is in combating many of the things that life throws up for us.However that differs from standing on a rairoad track with **it eating grin saying " here comes agreat growth experience". In pure medical-babble there are no withdrawls from tx because they define it as a craving for the drug(highly unlikely). But there are many many reports of long term non-prexsting depression,nervedamage(pripheral neropaphy)lupus further liver damage auto-imune liver damage and more. Now of coure you can argue that this is nt caused by withdrawl but i believe this misses the holistic meaning of treatmeant part of wich is "what occours at the point when chemo-therapy is withdrawn. The answers are unclear and causitive explanations are inadequate. On withdrawl of treatmeant there are no clear or certain expectations to say stay positive etc is TRITE in the extreme. Tell it to those whos experences have left them debilitated and suffering mental health problems. Positivity is superb for many but by no stretch of the imagination all.

[cuteus]

I was going to comment on this subject the other day when it first came out and decided against it.  Months ago someone posted about the psychological effects of not been on tx, how the adjustment(mentally) took quite a bit of their energy. As you said, 48 wks of a daily activity that is all of sudden no longer there, takes adjusting to.  symptoms, (now no longer there) associated with those weeks of med influx, also must be dealt with, as is the lingering symptoms from same meds.
I do not agree with the thought that if you are not having chills, runny nose, delirium tremens, there are no withdrawal symptoms.  We get "withdrawal" from stopping sugar intake, caffeine and other substances, it may be only psychological in some cases, but it is still real.
be well

[sofarsogood]

3a, 1.1 mill VL @ start. Did full dose combo for Genotype. Off meds for 3 weeks now. Hgb hit 8.6 in March. Still managed with only iron supplements although did decrease Riba to 800 from 1200 for short time. Then bumped up to 1000. It is different being off meds. Extreme fatique secondary to bone marrow suppression is still present, my gut is coming around, that was aweful issue during tx. Going to take a while to build up my counts. The tongue tip has lost ability to taste sweets now that I am off. Beginning to do light exercise (very lite!)

Ya know this reads crazy but I craved that **** only for a short time afterward. Never had hx of depression and managed to get through tx without an antidepressant. Was up to 2.5 mg of ativan a day. It was my sleeper and something to take the wind out of my sail when I needed it. I had some rough times emotionally while on tx. Developed GERD and had issues with esophagitis. Started on proton pump inhibiter but took very few secondary to these drugs being given cautiously in people with liver dz. Zofren is a great anti-nausea drug without sedating effects. I too wonder about long term effects of these two nasty meds. I am a registered nurse. I cannot dwell on this issue too much. It is time to move on. I obtained responder status with undetectable VL at 13 and 23 weeks. LFTs came back to normalize within weeks of starting tx.

I guess if you take one thread out of my rambling above it is this. Have courage, fight through the rough times. Find support wherever you can with family or a friend. Hang tough!! It is hard, very hard on some of us, hang in there.

My best always all. Thank you for all your help. I used to sign in as The Gaffer but had to change handles when new applications were added to my puter.

Praying for SVR status. Also all, speak to your body. Tell it to heal in Jesus name. It is the old principle of "calling that which is not, that which is." The most powerful message I can convey.

Dale

[Struggler]

I was lucky enough today to get turned down for two different Clinicle trials in one day. If I lied about a couple of things I might have had a chance. I'm trying to get my life straightened out and then all hopes get dashed. I have pain everyday, URQ, ULQ, left chest and arm, right chest, abdomnam pain, enflammed heart, enlarged spleen, uncontrolled diabeties, I shake a lot. Was scared to even think of trying treatment due to I am a care giver for my 75 year old father who has diabeties, a heart condition and is a BK amputee. I would have no support. And I have a temper. I can't even mow the lawn without becoming exhausted. Sometimes it takes hours to feel right in my head when I wake up. I've come here for over a year. I walked off my job in late Febuary, I had stressed out to much. My job was all deadlines which natrally always get moved up. Had daily pain from 8/03 to now lost 40 lbs because I couldn't eat (it was spare weight). Was suicidal for a while too then, also been involunarally commited twice. Two different anti-d's didn't work, Lexapro and Prozac, I even cry watching touching sences on TV.  My biopsy was a Stage 3 Grade 3 geno 1A &1B viral loads at just over a million. I'm a loner and I don't actually like even posting. I just hoping getting this off my chest will help me from spiraling out of control. Because this time I don't think I will make it. I hate doctors and going to their offices and forget hospitals, I panic at the thought. I couldn't beleive I got has far as I did in even going to the hospitals. I am sorry for my rant everyone has there problems here I know.


David

[Tallblonde]

I wish I had just the right words that could make you feel better.

All I have to offer is this truth:  God loves you and has a plan for your life -- including the suffering you're going through.  Trust him with all your heart and soul.

Don't give up David.  Seek HIS comfort and you will be blessed with the peace that passes all understanding.  

Susan

[Struggler]

I wish I could beleive that. Thanks for the thought.

[Honey15637]

I'm so glad you posted!  Your dad is lucky to have you caring for him and in order for you to do this,,,,You definitely need to make a plan to get yourself back in good health mental and physical.  I know what it is like to be caregiver for children and/or our aging parents and it can be a double whammy at times. But,,,,we have to take care of ourselves first in order to be able to help others.  I do know what you mean about visiting hospitals, drs and it does get very old when we are having aches and pains due to hep c. You really do need a dr to work with your depression and fatigue and then to work towards starting tx when in better frame of mind.  Getting rid of this disease = Good Health for us in are aging years!  We do care and I will pray for you in this difficult journey!

[ringeding]

david, i am sorry for your struggle.....please keep writing as well, and allow yourself this forum to hopefully offer comfort, wisdom and support....you are in my thoughts


sam hall........would that be you paul darlin?????..(it was the buffalo!!!!)..........i truely am so deeply sorry , i know you are left with many disturbing and difficult side and after effects....i wish i knew what to tell you...my heart breaks for those that still struggle so very much even after tx.....please know you are thought of often and i do so hope you begin to feel better soon......its a tough, difficult, long road....please don't stop expressing the difficulty you are experiencing....it is important for all to know that not everyone has an easy time of it post tx.....

huge hugs guys!!!

kimmy

[cuteus]

this forum can only benefit you the most if you let us know of your struggles, believing in  a higher power can relieve some stress for those who believe, but you are still left with those everyday problems. I do not  know what state you are in, but some offer assistance for respite and home care tasks under the Office of the Aging. you need the relief.  Is it possible to get Medicaid under a dissability clause(not talking about SSDI or SSI) plain Medicaid that might pay for regular intervention with your mental health status, diabetes and hcv.  
You said you are a loner, but at some point reaching out could save your life and your sanity.  Try applying for SSDI or SSI, since they offer programs that allow for you to have medical care and partial employment.  This is not just going to come your way though, you will have to access it.
  It sounds like you need regular medical care and I  am not sure clinical trials is the way to go for you.  If you have a psychiatric dx, there are actually many community programs that can assist.  A local information and referral hotline in your area can put you in touch with these organizations.
Keep posting when you need to vent. It does help and no one is going to think you are whinning, not here.

[Indiana]

I am unclear as to what your point is with continuing this topic. Are you suggesting that a slow withdrawal from the Meds(tapering off) is the way to go? Or are you just trying to say that we can have problems that are created as a result of the meds themselves?
Sounds like a lot of "doom and gloom" to me.
There is NO evidence that tapering off of these meds makes any difference or is necessary. If you have some I would love to see it.
There IS a lot of documentation about the possibility of problems created by the tx. We all read that before we started tx. Most folks don't have permanent damage. But many have lingering sides that take awhile to go away.
There are NO other form of meds that will kill "The Dragon". Not yet. And probably not for 3-5 years. The trials are on-going but they are just that...trials. We have little info about the possible sides and effectiveness of those.
I'm sorry but I don't deal in "Holistics". I deal in reality. MY personal reality is that I did 50 weeks....I am cured....and I have NO lingering after effects....NONE......and many are like me. I feel better than I have in many years. I think this is what we all hope for. And there IS reason to believe that it can happen. I am the living proof!
I actually met my first happer feom the Forum last weekend....Chevy. We talked for hours. She can tell you about how I look and my attitude. She wants to get to where I am....as do most of the folks here.
So what is the point of worrying about what MAY happen? I still don't get it. Once we start tx there is nothing to be done....except to finish and hope for the best. There are NO options.
If you are suggesting a different end-of-tx plan...spit it out!
Most here are already into their tx. Planting the seeds of fear does nothing to help them. It only makes them more afraid and so lowers their immune response. This is a "support" group....not a "general information" site.....although we do welcome any new info. We support those who are Hcv patients. And especially those who are on Tx. They all know what they have gotten into. They know the odds.....and they know the risks. If they don't then they haven't done their homework.
So my question remains.....whats your point?

[Struggler]

I've tried reading the Bible again, I've read the bible severl times and bringing God back into my life but I can't seem to find him anymore. Now I need to find a large print bible my eyesight isn't what it used to be and I'm only 43. Sometimes I watch Joel Olsteen on TV and I find he can be inspirational and give me some hope. I had tried to get help but was told I made to much money then.
I was diagnoised in 1/03. My biopsy was done and it took him 2 weeks after having it to get back to me. I called everyday finally he told me it was the best one he's ever seen. I asked about a grade and stage and was told they don't grade and stage liver biopsies and that bridging Fibrosis is dead cells and everyone has them. I new better then that. I told him that I wanted his diagnosis written on the report and I was going to send ito my cousin who works at a major University Hospital nearby for there review of it. He refused to give his diagnosis in writting. They eventually got the slides and spoke with the pathologist and thats how I got my Stage and Grade.
Here's my second Gastro's story he was the worst. I went to him for some severe pain URQ he proddedd me and said he had no idea what the pain was, go back to my PCP. As a last gasp for help when I was leaving I told him I had a mental/suicidal history and had been suicidal for the past three months and depressed for the last six at the time he said "Oh Boy' and then let me just
walk out of the office. I looked the part so to speak, even my aquantences made comments to me about it. It killed me to tell him that, reaching out for help and that was the answer "Oh Boy". I sat in my car for about a half hour and cried. Two of us were lucky that afternoon. We both lived. So my faith in doctors is limited. And asking for help, financially, medically kills me. I have an interview tomorrow I'm afraid I'll go there sit in the parking lot and leave. I do good at what jobs I work at, I advance quickly but that usually means more stress or I become depressed and suicidal and if your not going to be around why do you need a job, then I quit. I've never held a job for longer then 2 years. I'm sorry for letting this out on everyone. It's one reason why I don't post, plus they turn out to be novels. I'll stop posting now so I don't bother anyone but I'll continue to come and read the posts. I appreciate the replies. It amazes me that there are people you don't even know acually care more then some doctors.

[cc2]

These meds have not been used that long to be able to say what effects may be down the road but I knew that before going into tx.  I tried to learn as much as I could before tx and then I made a decision, just like everyone here had to do.  I had no withdrawal, you still feel like **** because the meds stay in your system, but each week the sides go away and you feel better and better.  I couldn't wait till the end of tx and I am so glad I did the tx and trusted in Jesus to give me the strenth to get through.  So everyone who is on tx hang in it does get better.

Indiana,
Its been awhile and I'm so happy to hear you are still negative on your year test.  My dinosaur computer raised its head last year for the last time.  Finally go a brand new one and I am up and running.  I see you still have your wit and so glad your still on the boards.  Hope your family is doing well.

God Bless

[itsnotover]

David, hi and glad you came here to talk.  You are having a rough time and my heart goes out to you.  But we've all been there at one time or another.  I agree many doctors are morons and I've had many -  so i know this can add salt to the wound. Please keep trying to find a caring doctor, they are out there!!  I found not one but two.  Contact the American Liver Foundation and you can get a referral. Expalin your story, they WILL listen and refer you. Also ask them for a support group ... getting out and talking to others can definitely be a plus. You can't just sit back and throw in the towel.  Put a smile on your face and plunge forward now matter how hard it seems.  You can do it!!!  Good luck!!

[derail]

you must keep the hope alive and have a positive mental attitude
nothing is ever really difficult unless YOU make it so  .fo course there are always the bumps along life's highway. thats what makes it so great two rules to always remember : don't sweat the small things, in time will they really matter, and two; they are all small "things". if you find someone with all the answers, remind them they haven't asked all the questions .the odds are difficult with the dragon, but he has and will be beat. like lots of other diseases have and will be. it might not be easy but we could be the frontier guineau pigs so that our kids grandkids and future of this old world beats this scourge. believe in whatever GOD you believe in and be ready todance the dragon to hell.

[Honey15637]

Great Posting!!

[twotells]

There's not alot I can say that will make the pain and disappointment go away.  I know that this disease and the treatment have hurt some people really badly- the suffering is real.  It does help to know you are not alone.

I was disabled with severe pain within 1 week of starting Pegasys/Ribavirin from a dramatic worsening of peripheral neuropathy related to something called cryoglobulinemic vasculitis.  I'm still on pain meds for the neuropathic pain. I've also had to fight with depression throughout my treatment, which is now at wk 71.  I'm on a gradually reduced dose from wk 60 through wk 96, recommended by a respected hepatologist.  I guess someone has to be the 1 in 20 heppers with cryoglobulinemia, and I won the prize.  The odds of having it made worse by interferon have got to be greater yet, but I won that prize also.

I consider that I'm fortunate to be able to try to save my liver with this treatment, even though I'm one of the people with some nasty autoimmune consequences.  I was also fortunate to get a cutting edge tx for the cryo (Rituxan), which worked well in my case.  I don't know how long it will take for the pain to go away (maybe another year, maybe less, maybe never), but I'm better.  I can walk normally now, and today, I got on my bike and did 5 miles for the first time this year.

I haven't made it all the way yet, but if I do, the things which help are:
   friends, family, and this forum,
   look for one blessing each day from my God,
   fight for the best medical care and benefits I can get, and don't take 'no' for an answer.

Hope is a gift, and I pray each person on this forum gets enough each day to make it through.  God bless,  Dave

[derail]

thanx muchly for that encouragement i really enjoy all the input you and allothers provide lol daryl

[new-sojourn]

You sound like me, emotional wise, before tx'ing & cl'ing the hep c -2b-virus.  I'm not like that now at all and the only thing changed is the hep c is gone now.  Those are all signs of ammonia build up-encephalopathy.  I had no insurance, work history (housewives don't count for ss) and had already gone into liver failure due to unstoppable esophigal bleeding and advanced encephalopathy.  I got a liver expert in a big city 1/2 day away who got me in a study for ESLD (end stage liver disease).  No questions asked about past behavior or state of mind.  I had one chance and nothing to lose.  I was dying, literally.  Well, I cl'ed a 24+yr old transfused infection in 18 days.

I would try treating, then praying.  And change your diet.              

[cindee]

Hi,I feel your pain as I have been left w/ tissue damage and fibromalgia. I HATED 48wks of tx. had a horrible time on it, said when I was on it, I said, "I'd never do it again." Well I do believe in "never say never". I replapsed. And I will be going to do it again! I start again in 4 to 6 months...maybe a little earlier....but I am grateful to have a second chance @ killing this virus that has tormented and still is tormenting my body and life. I will DO ALL it takes to rid myself and be healthy again. I can say hang in there...most sx do go away, but I dont think you'd believe me. LOL.....I will keep you in my prayers. Cindee

[cindee]

Sorry I've been away alot of this week, but so has my ENERGY!!!! Doggone it!!!! Hope all is well and I've been thinking of everyone and meaning to get here each day. I'll be back soon. So don't think I've fallen off the face of the Earth! LOL.....I want to wish everybody minimal sx and better health to all very soon!!!! I Love You People!!!!!! LOVE @ PRAYERS TO ALL, Cindee

p.s. I have been using what little energy I have to visit w/ my neighbor Betty who all knows she has cancer and not much more time on this ole' earth. Her spirit seems to be as good as possible as she plans for her sickness and.....well... the rest. Please keep her in your prayers. Thank you all again. Cindee  :)

[Sam Hall]

Lets see if i can get this right I thought that i said several times that staying positive is great medicine OK. What i am refering to is not "doom & gloom" or "sowing seeds of fear" it's called HEALTHY CONCERN! That is the recognition that problems may occour as the result of our actions or others actions or just life. Then you can take steps to deal with them. I believe that a holistic view of hcv would be looking at the whole picture of it's effect treameant, your response, the withdrawl of the treatmeant aftermath, your future plans to take care of yousef etc(these don't exist?) Indy you switch from promoting current research,trials etc to your personal and other anecdotal evedence, that makes things difficult to pin down. No i have not tapered the end of my tx and see no reason that one would as i have said comparisons with narcotics is a nonsense.
My point? Currently this is the only treatment available, staying positive will help(not cure) and things can continue to be difficult following the end of tx. I applaude and like your humour and it's a tonic for many and at other times when i'm going through the wringer my life is SERIOUS and it's "the gravel in youre guts and the spit in youre eye" that see me through. Stay positive and try not to belittle others when they ar'nt.

[Tallblonde]

I'm glad to hear that you've turn to the Bible before for comfort.  Please read the Book of John again this weekend.  And the Book of Job.  I know that God often seems like he has abandoned us in our darkest hour, but he really hasn't.  Pray earnestly for his comfort and peace and I KNOW it will be bestowed upon you.  And don't forget to consider the many blessings that you do have.  You must have something going for you to get and keep a job for two years at a time. Try to focus on some of the positive aspects of your life.  God doesn't want you to be in a state of despair.  

Hang in there, David.

Susan

[cuteus]

see if you can take a break from work and concentrate on recovering both your physical and mental health.  It is hard, very, and somewhat shameful to depend on the system for assistance,  but keep in mind that it will be a temporary aid, meant to give you a much needed rest, nothing else, a step on your way to health.
I have worked for social services and have told people to come back a couple of weeks later when their income or lack of, would qualify them.  
I will keep you in my nightly wishes/prayers.

[snook_man]

Good morning to all!! I feel all the feelings mentioned above..I only did one week of tx and Dr. pulled me off immediatly.. Uncontrollable crying, GERD, nausea, vomitting, and suicidal thoughts..I could not imagine 48 wks of that.I had to go to Dr. yesterday, as I have strep throat and she gave me antibiotics..I had wonderful experience.. As far as this being the only tx for hcv, do a search, see what comes back.. FDA, states that it is "cost effective" , because it might work, and keep insurance companies from paying for transplants..I heard from my Dr. that there are clincals going on right now stating 70% svr for geno 1.. I do not qualify, because i didn't do enough of current tx to see if I responded.. I went to the CDC website, and it is amazing that you take peg to save your liver, but most of us need 3 or 4 meds just to stay sane and able to eat, THAT CAUSE LIVER DAMAGE!! I have talked to many people that have done tx, and made it through, just losing some weight, and working straight through.. I am going to take alittle break from tx, and wait for the IDEAL studies to report which meds are better, peg or pegysus..They should be out in less than year..I want to take the most effective tx when I   do this again..Dr. wants to lower my dose to see where I can tolerate, but I see the % for svr on lower dose is like 20%..I am going to clean up diet, and excercise, and see if I can stabilize my ALT's. They are only at 82 right now, and AGT's are normal..
Life is hard, and does not play fair!! We have to suck it up and make it through!! I am trying to stop thinking down the road, but focusing on today.. I remember someone saying something about 12 step program.. Same principles, focus on today!! Stay positive, but tell the truth.. The truth is more helpful than deception..People need to know that others are feeling the same things they are feeling..It is comforting to know you are not alone..Love will work miracles!!

[cuteus]

That is a good outlook on things, keep it up. It is great you are doing your own research on things. We must stay well informed.  The IDEAL study might not be as ideal as they claim so don't wait for those results.
See if they can start you on the Pegasys next time, the sides are more tolerable according to those that tried several treatments, if i remember correctly you did alfa 2b peg.
  Try to work on the fears your dad research instilled in you that could hinder your attempts at cure and make sure your dr is up on interventions he can try to ease the sx.
Most of the sides are short lived and short term intervention is not going to harm your liver. Many here had other meds to help them complete tx and they are cured.
Best luck to you, you seem to have a good grasp on who you want to be, your mom and wife must be very proud of you.

[new-sojourn]

I was a mess physically and mentally and w/no $$$'s.  I did 24wks on a med-paid study.  I did not use anti-nausea, AD's, sleep aids, etc. that others deem 'necessary' to sucessfully complete tx.  I smoked dope instead.  Before, after and during.  They didn't ask, I didn't tell.
  I've 12 stepped right out the door before and nothing changed.  I've prayed until I doubted.  B/it wasn't my soul that needed saving-it was my liver and blood.  And the devil was a virus.  And that was one devil I couldn't prey off.
  Drugs-even,(esp) legal-and alcohol fed the virus that was making me sick mentally, emotionally and physically.  I just quit feeding the virus.  Like that.  And added more herbs-incl marijuanna.
  I just tx'ed & kicked back and kicked dragon butt.  And now I'm cured.  Never had 'riba rage', sleepless nites and never got the munchies-a pot smoker's dream.  Livin' on island time. that was 2 yrs ago.