No longer the same

[GOERGE]

Love to you all. This is my 7th week of pegetron. I can simply say I am no longer the same, I feel tired most of the time, cannot have my normal life back. I cannot work as before or being predicative as used to be. I cannot have a normal conversation without getting nerves quickly. I start to think badly about God and Life in general. I blame him for such disease that I believe whatever we have done, no one deserve it. I look at my little babies and as a father I wonder how God allow this to us. Does it make us any closer to him or just to give us another reason to get away from him?

I am really sorry to talk like this. I am just wishing hope, for us all, at the end of the tunnel.

Tomorrow is my first appointment with my Dr. What should I ask for? What should I tell?

Best to you all, george..

[Dorothy and Toto]

Hanging on by a thread.  That was my comment to people asking how I was doing in my first couple months.  You just can't explain how you are feeling and the sides but you did it well.  We all go through that.  This is my 21st week and some very stressful events have happened in my immediate family causing me to feel the same again.  But I press on and some days are better especially when I have enough sleep and get some form of excersise.  And drink enough water.  My saving grace was asking the doctor for a tranquilizer- Zanax- to help me with the nerves and sleeping.  It smoothed those rough edges.

[Amerabrit]

Nice to hear from you, Amy.  Thanks for sharing your story and many congratulations upon clearing... Be well..

[Amerabrit]

Philaguy:  Being sick absolutely stinks and feeling down is the worst..  There is an end to this tx, please hang in there, you will make it through... Thinking of you:).

[cuteus]

Hello there, nice to meet you. Ty for sharing and wish you permanent SVR...HCV  free life. let us know the tests results and hang around to help out with questions and suggestions.

[lollie]

Hi everyone,  i'm Amy from Scotland & pleased to meet you all, i'm new to this forum and i'd like to tell u all my story of living with HepC genotype 1 the hardest to treat.

Firstly i'd like to say when i found out i had it i went thru all sorts of blame and i was really angry at my family and thought about ending it all but i have a great partner that changed me around and made me realise it wasnt the end of the world as people can get thru this.  Anyway to cut a long story short i was sent for a liver biopsy and then the results came back that i had chronic hep c and genotype 1( the hardest to treat)and must lose weight in order to go onto treatment,  i lost 2 stone and then it was time to start i was on pegysus interferon injections and ribavirin pills 3 in morning and 3 at night for 48 weeks and in the first 24 weeks i was tested to see if it was working if it wasnt they were going to stop treatment as it wouldnt work even if they let it go longer but to my good fortune it did work my count before i started treatment was 50,000 and after 24 weeks it had dropped to undetectable levels under 500 i think, i also forgot to add before i was given the treatment i was told i must go on an anti depressant which i was already taking and the contraceptive pill cos they said the treatment would damage the feotus so i must not become pregnant so i made sure i didnt,  when i started i was at the hopital every week they took blood to check my platelets and stuff and i was told to stay clear of anyone which was ill cos if i got an infection it could mean trouble as my platelets were really low and my immune system wasnt going to be able to fight it but i must admit i didnt go out much only to the shops for food if i could manage but i was lucky to have my partner as he looked after me he did absolutely everything and if i didnt have him god knows where i would have been,  also while i was on the treatment i was really ill,  i would vomit until there was nothing left and the sweat that would pour out of my body was unreal u'd have thought i'd just got out of the shower also i lost lots of hair from my head so to conceal that i bought a skip hat in america its a baseball hat i also didnt tell my parents that i had this cos i didnt want to worry them and i know they would have fussed and thats exactly what i didnt want as you all probably feel the same maybe just me,  i also think my depression played a big part of that as i issolated myself from everyone,  i wouldnt open the door or even answer the phone but now i can say i'm finished treatment 4 weeks ago and i got the all clear but i've got to go back in 6 months to check to see if its still undetectable or came back.  But Whatever happens happens i and my partner will deal with it.
We feel this is just 1 of those life tests which will make u or break you and god wants u to make it,  you make mistakes in life and its how u deal with it thats important,  you've got to all be positive and strong minded dont let these gremlims in.

All the Best from Scotland
Stay strong and you'll make it
Amy.

[Sam Hall]

As you can see your experience is fairly common and in my case i think i just got used to mst of it.Stil miss those hits of peg. As for your family i have 2 very youg children and it hurt like hell that i might of infected them or leave them fatherless.However it turned out to be my relationship with them and my wife that took the battering.It's part of our family histoy now . As for God none can know his mind but I grew closer he gave me life and all it involves all that you are going through. Anti-Depressants i did them Venfalaxine(Effexor)they did nothing i believe them to be snake oil(look up Dr Breggin) but that's your choice. Hang in George you'll adjust.

PS Indy any more like that and you're gonna start making folks worse!

[Amerabrit]

Hi there, I'm so sorry you're having a rough time these days.  Before I started treatment, I read this forum as often as possible, I read all the links posted and talked to my Dr about the SX of tx so I had a really good sense of what to expect once I started the tx therapy.  I never did have a lot of patience before starting tx and there are days now when I have a lot less, but whenever I feel myself start to tense up, I repeat over and over, "This is not me, it's the meds;  it's the meds and this too shall pass".  Sure enough, after a couple of deep breaths it does pass.  Try to change your thinking, if you can Goerge, take control even though it isn't easy, and instead of feeling down and wondering "Why Me?", make a choice to feel grateful that there is a tx program out there for us.  Perhaps you could use this experience to show your children that life throws you a curved ball every once in a while but you pick yourself up, dust yourself off and deal with it.  Choose to be  a wonderful example for your children as they learn how to deal with life and it's uncertainties, show them that there is always hope and that giving in is not an option! If you feel you can't handle the depression, ask your DR. and ask if he feels you might benefit from an anti-depressant, help is available to you. This tx can be a lot harder on some than others so take help wherever you find it. If God does exist, I don't believe he did this to you, I believe life did it to you but perhaps God gave you choices about how you handle your illness and tx...?
Feel better, Goerge and stay strong, your children need you:).

[Tony-z]

I spent 1 1/2 years wondering if I would ever be close to the person I was before TX.
Just to let you know that you will eventualy become yourself. Maybe not the same person as before the TX but a happy content person.


    Good Luck and May God Bless you and speed your recovery.


                TONYZ

[cuteus]

anemia usually sets in within the first two months of Tx. This is what causes fatigue, shortness of breath, muscle aches and weakness, and yes, probably depression from the decrease oxygen to the brain and the crappy daily feeling. You don't need to be too low in the rbc to start feeling the ill effects of the decrease. Your body seems to be sensitive to the slightest decrease. Procrit brought me back to some normalcy, though I still get flu like signs for which I take vicoprofen. The pain med has also kept me going to work and surviving. Let's not be afraid to ask for what we need in order to get thru tx, this is the goal and drs need to help out.

[PhilaGuy]

I want to thank you for your message, Goerge, and everyone else for responding.  What a Godsend.  This Thursday, I am doing shot eight, and this has probably been the worst week for me on treatment.  I don't know if my CBC is dropping, if I'm just getting worn down by it all or what, but I have been exhausted and kind of miserable for the last seven days.  There really must be something to this newly-discovered seven-week thing!  It's so weird how I've almost been on the verge of tears the last couple of days (thank God I haven't seen any sappy phone company commercials!).  Anyway, I called my nurse yesterday to see what she thought and I'm waiting to hear back from her.  Yesterday, I couldn't do anything for any sustained period of time.  I'd throw in a load of laundry, then have to sit on the couch for a while!  It's depressing.  Does anyone know if low WBC can cause fatigue?  My count is at 2.0, I believe.  My nurse says it's OK if it stays there, but shouldn't go lower - I'm getting tested for that this week.  On Saturday, I spent the afternoon with family, came home and slept from 8 pm to 8 am!  Last night I took two Ambien and got a good eight hours, so I hope today is better.  Well, just wanted to commiserate.  After six weeks of smooth sailing, I'm finally hitting some choppy water, but you guys are a great life-preserver!

[Indiana]

Laugh.....LAUGH IN THE FACE OF THE DRAGON AND HE CAN'T GET ONTO YOUR HEAD!

Three handsome male dogs are walking down the street when they
see a beautiful, enticing, female Poodle.

The three male dogs fall all over themselves in an effort to be the one to reach her first, but end up arriving in front of her at the same time.
The males are speechless before her beauty, slobbering on themselves and hoping for just a glance from her in return.

Aware of her charms and her obvious effect on the three suitors, she decides to be kind and tells them, "The first one who can use the words 'liver' and 'cheese' together in an imaginative, intelligent sentence can go out with me."

The sturdy, muscular black Lab speaks up quickly and says, "I love liver and cheese."

"Oh, how childish," said the Poodle.... "That shows no imagination or intelligence whatsoever."

She turns to the tall, shiny Golden Retriever and says "How well can you do?" "Um. I HATE liver and cheese," blurts the Golden Retriever.

"My, my," said the Poodle. "I guess it's hopeless. That's just as dumb as the Lab's sentence."

She then turns to the last of the three dogs and says, "How about you, little guy?"

The last of the three, tiny in stature but big in fame and finesse, is the Taco
Bell Chihuahua. He gives her a smile, a sly wink, turns to the Golden Retriever and the Lab and says ......

(GET READY FOR THIS......)




"Liver alone. Cheese mine."

[harley dude]

Hey Chev, sorry your feeling down,  "CHEER UP", your almost done!! A Big Hug your way - See Ya -- Harley Dude

[busdriver]

I am fairly new to the forum but boy oh boy do you sound like i did at the same amount of weeks. It seems about 2 mos in you just get tired of being sick and tired. The people in this forum with all their good words and thoughts came through I am at week 18 and still going. One thing you have to get on a good antidepressant.Right after i started feeling like this and by the way i went through 13 weeks last time and became suicidal and was taken off meds for attemting it. Thought I could do without them. The DR i had was not very good either and just put me on paxil it did not help I am on 100mg zoloft now and i don't feel blue. It is not a miracle cure but it does take away the feeking of helplessness and hopelessness Please try to find a good pysche DR near you and tell them you are on tx. If you find a good one like i did who also knows about treating the depression for hepc patients it is wonderful. You will see a difference within a week I promise.

[LuckyHaskins]

I guess that the best that I can add is this: We are all feeling "a lot less than normal", I have not been enjoying this Tx, but we are all making our way TOGETHER. I would be at a major loss w/o this forum to come to. I, too, have been very discouraged at times, pushed the people I care about most away (now and then, not permanently, I hope!!!), been very impatient and intolerant and a general "pain" to be around at times. What keeps me going through this is the chance to offer encouragement, AND to complain about this Tx, too! Isn't that a strange paradox? Yes, there is a lot to complain about, don't we all know!!!


8 1/2 weeks to go, and I am so much looking forward to the end of this treatment.


Please, let's hear from more of the people who have been successful w/ Tx, it REALLY keeps me going!

Best wishes to all,

Love,

Pete

[derail]

george , Itoo had the same feelings I talked to my minister about it and he settled me down with the same advice already given. you are lucky tho' to have found this forum I didn't until about 5 weeks after stopping treatment early I've found compassion knowledge wisdom and friendship here and most of the time I add humor and wit and,according to some,an understanding of how we each relate. Remember its always darkest when you are alone and with this forum you are never gonna be alone . hopefully,I restart tx(treatment) this fall as does cindee and otherskeep searching and asking questions and if someone tells you they have all the answers, they haven't asked all the questions    Daryl

[honey1616]

Sioux,,,That is awesome!  I had read that before and just love it and it so fits,,,,when we are down and out,,,just knowing we are not by ourselves!  Hope you have been feeling good since quitting the meds!

Chevygal,,,Chevyyy,,,Where are you?  haha Hopefully having fun and enjoying week!  What is the countdown now....3??

[Sioux]

oops again,
looks like it split with my post in between. Sorry again

[Sioux]

oops,
The poem posted twice. Sorry

[Sioux]

One night a man had a dream. He dreamed
he was walking along the beach with the LORD.


Across the sky flashed scenes from his life.
For each scene he noticed two sets of
footprints in the sand: one belonging
to him, and the other to the LORD.


When the last scene of his life flashed before him,
he looked back at the footprints in the sand.


He noticed that many times along the path of
his life there was only one set of footprints.


He also noticed that it happened at the very
lowest and saddest times in his life.


This really bothered him and he
questioned the LORD about it:


George,
Call your doctor !! Tell him/her everything you are feeling.
Everyone here can relate to your dispare. You also may be having anxiety attacks along with your depression. I did. If you are not taking an AD or anti anxiety meds you may need to. If you are you may need to increase your dosage. But be sure to ask your doc first. There were several times I felt like just giving up on tx. That it was to much for me to handle. But I made it thru 48 weeks. I am almost 4 months post tx. And still undetectable. So hang in there. And don't loose faith.
When I read your post it made me think of this.


"LORD, you said that once I decided to follow
you, you'd walk with me all the way.
But I have noticed that during the most
troublesome times in my life,
there is only one set of footprints.
I don't understand why when
I needed you most you would leave me."

The LORD replied:


"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

[Galen]

Everyone here has had some wonderful words.  I echo them and at the same time, urge you to consider asking your doctor about an anti-depressent.  There has not been much talk about this particular problem lately, but please know that interferon is known to cause depression in those with no history of it and suicidal thoughts in those who have previously suffered from it.  It took about 6 weeks for me to hit the 'valley of tears' and when I broke down and started taking an AD, life was bearable again.  I was able to wean myself off about two months post-tx and would definitely choose that course of action again.

[hepcgetlost]

Goerge,
Boy, your post really touched a nerve...I had many of those same feelings and still do, but the longer I've been on tx (week 27 now), I seem to be more accepting of what's on my plate.  Follow Honey, Edgar and cuteus' advice and keep coming back here to talk to us. The people here really know what you're going through and have either been through it themselves or are going through it with you at the same time. This forum has become my lifeline in many ways. I feel like I can really let it all hang out here and everyone will understand and not judge.

Honey and Edgar, your response to Goerge also helped me just now

Cuteus, Impatience and apathy are my two middle names these days. And now I have to add envy to the list...You get seen every month??!! I can barely get the nurse to return my calls. And there's certainly no mental health assessment. I've seen my hep doctor once before starting tx and once since I started. My bloodwork is done by the nurse at my internist's office and she faxes the results to my hep doc. Unless I call to follow up, no one even mentions it. Not even now when my WBC has gone to 1.8. No one seems monitoring anything. I can't wait to move...I have heard great things about the hep doc I plan to see in New Mexico.

Yeah, I guess I'm angry about that, but I tend to be more apathetic than angry these days. Anger takes too much energy that I don't have.

I may be impatient with everyone else, but I sure do love everyone on this board. Wishing you all a good week with fewer sides than usual. I'm off to do shot # 27 in a while. To everyone's health, Judi :-)

[DownThisRoad]

You sound just like I was thinking when I found out I had hepC and when I started my treatment.  Everything that you have stated in your post, plus more was whirling through my mind.......

All these unsettling thoughts remained with me for quite some time.  Even more terrible thoughts and punishment, I was thinking.  I was absolutely just ridden with guilt, didn't feel well, got on my treatment and felt even more rotten mentally, physically, spiritually and emotionally......... It goes on for awhile...so hold on.  

It gets better is what I can tell you. All these harbored thoughts seem to find a place for themselves and somehow, yes somehow, stop interrogating and punishing you constantly.

Keep your chin up..........hey you know what........you are taking the meds.  That is the step in the right direction in ridding yourself of this terrible and unwanted disease.

Just think, if you didn't take the steps in order to take the medicine and give your body and mind a chance to get rid of this disease......then you really will have something to blame yourself for and feel quilty and be upset and really mad and not worthy, etc.

Give your children and all your loved ones a hug every single day.  It shows them that you care and you have the feeling inside of YOU (every minute of every day) that you are INDEED there.

Keep going....keep the faith.  It will get better for you.  Tell your doctor your feelings.  Let him or her help you.  You may need a anti depressant in order to deal with all of it.  There is nothing wrong with that.  We all need some assistance now and then.

CONGRATULATIONS on starting your medicine to your recovery.  Remember.............hug your children every single day!!!

I just finished 56 weeks of treatment meds.  I am undetectable of the virus, as of today !!
~dtr.

[honey1616]

Edgar,,Thanks for your kind words,,It means alot to me!  I know what you mean by being teary eyed because I also feel so lucky that I can do the tx and don't have to worry about that part! I know so many are struggling with that part and it does make me sad! Hey,,,tomorrow is the big day for you! I feel good about your test!  Let us know!

Cuteus,,,nope,,,never,,,Don't even know what it is.  6 to 8 weeks,,,I found I was getting depressed at times and not like me at all and told my dr but he never would give me anything and now I have been fine.  What kind of test is that?  I think that it should be a must for all these drs to monitor your mental health...There is no need for anyone to feel depressed for long periods.

[cuteus]

I have learned to sort of control my impatience, it takes a lot of energy and concentrating and when something unexpected happens, I have no patience for IT so I lose it.  This is temporary for the majority of us. apathy seems to be another one some feel, not sad or depressed but could not care less if it happens or not attitude.  You learn to live with it and adapt unless it becomes disabling, then your dr needs to intervene.  I feel I can take this  annoyances if svr is the reward.

One of the things you mentioned" feeling punished" is one of the questions I must answer every month at my hep appt. They hand me an electronic device that contains the Berg mini mental health assessment.  How is your practice monitoring your mental health?  
Everyone: how does your dr monitor your mental health? does any one else take the Berg test every month?