Need moral support

[MiouMiou]

Hello:

My life changed last Tuesday when my gastro called and told me I tested positive for Hepatitis C.  Since that time I can't stop crying.  I am very, very scared.  I went for the second blood work last Friday to get tested for genotype, etc., and will see the gastro on Sept. 4 to discuss the results.  I am not coping at all.  I did stupid things as a teenager, and now I will pay for them with my life.  I just am in shock.  I am 54 years old, I don't drink, never drank, I don't take drugs, I exercise one and one half hours  every day, and I just feel that I am going to die.  I know we all die someday, but this has brought me to the lowest point in my life, and I am barely holding on.  Before this I was never sick in my life, was only in the hospital twice, when I had my children.  The more I read about this disease, the more it frightens me, with the percentage of people that get liver cancer, cirrosis, I just feel so very scared.  I am going to visit my primary care physician tomorrow and talk to him, obviously anti-depressants would help, but that will not change my terror.  Anyone have any suggestions, anything positive, anything that will help me hang on?

[debnevada]

Dear:  We understand what you are feeling. COMPLETELY.
Good that you have your ducks in a row about followup blood and the doc appointment.
I found out on a Friday that I was Hep C positive.
I spent the weekend wondering whether I should kill myself because I read a whole lot of stuff in a vacuum. Then I started to talk to my friends, who talked me down off the ledge.

Is there anyone you trust to know about your diagnosis? A dear friend?  I would open the dialogue with them and get them with you face to face if possible (on the phone at least) and get some minute by minute support should you need it.

Easy to say to you NOW in retrospect but you mustn't awfulize, dear.
Also, it makes no sense to punish yourself if you think something as a teenager and as many here say, most people die WITH hep c, not OF it.

Pull back from the worst position.

We are here. We understand.

Where are you located?

Deb

[MiouMiou]

I am located in Delaware.  I have talked to all of my friends and family, and everyone has been great, several taking time off of work and driving down here to be with me, or take me off with them so I am not alone.  My husband has been amazingly supportive, it just kills me to see him cry. It is the times that I am alone that I spend hours on the internet reading, reading, and it does not help . . . There is a Hepatitis C support group that meets in the town I live in once a month, and that meeting just happened to be the very next day after the doctor's phone call.  I did attend that meeting, and everyone was helpful and supportive, and I was ok that day, but now a week has passed, and I am alone with my thoughts, and they are ugly.  

After I went for the first blood work I found that my liver enzymes were elevated (and this was all on a fluke because for my birthday I had decided to give myself the gift of health and quit smoking, went for a full physical, and that is why I had all the bloodwork in the first place), I had a liver ultrasound done, and they said fatty liver, and they wanted me to go for additional blood work but then I was scared and tore up the request.  When I went for my 6 month check up with my gastro (I have ulcerative proctitis) he made me go for the additional bloodwork.  The doctor said I needed to lose weight (have put on a few pounds over the years) and be on a very low fat diet, so we joined Weight Watchers and I have lost 6 pounds in 3 weeks and we are on a almost completely fat free diet.  I do still exercise at a health club 1 -1 1/2 hours a day.  

I don't know how to pull back from the worst position.  I feel I have been handed a death sentence.  Both of my kids are getting married next year.  I don't even know if I will be here by then.  If I have had this thing for 35 years it can't be good at all.

[debnevada]

My dear, you MUST pull back from the worst position.  You say you have two kids getting married next year. As afraid as you are now, I can pretty much tell you that barring getting hit by a bus....or a meteor, you WILL be there, dancing at their weddings (and probably PAYING for them too!!!)


There are plenty of people on this board who have had this disease for as long as you, or longer.  Kicking and screaming and posting rude comments, making us smile, supporting us all. You have NOT been handed a death sentence.  Believe me, I was there, too.

While you are in the midst of this fear, you can't think it will get better, but it will.
There is actual, quantifiable, REAL hope for you. Whenever i sit here and get afraid (which is't often much any more), i know there are people on this board who have it worse and still live their lives.

I wish we lived closer.

Deb

[Andiamo1]

I am 67 years old and I have this disease since 1961.  I have lived a very full life and plan to keep on doing it!!  I understand exactly how you feel, but listen to what Deb said and enjoy life.  I know that I appreciate every day far more now than I did when I thought life was infinite.

My suggestion is to find a very good hepatologist.  You will have to go to a major medical center but there are many in Washington and Baltimore.

You will find very good advice here and plenty of moral support.  We all know EXACTLY what you are going through and we will be here to support you and answer your questions as best we can.

[ponyshel]

Reading your post made me think of the first time I posted....It is scary in the begining but you will do fine with whatever he may hand you...really...take one day at a time,take a deep breath and let it go...you are not being handed a death sentence  its just a barrier you must overcome and you can do it...my prayers:)shelly

[tumbleweed1999]

To a degree, I understand where you are coming from.  I was diagnosed 2 wks ago with an Autoimmune problem that is already in stage 3.  (the immune system turns on itself and starts destroying the good cells in the liver/bile ducts).  We are retired, Sr. Cits, and had big plans to do what we wanted when we wanted and now this.  The only thing that it has actually accomplished, for me, is it has made every day more precious.  Things that I tho't were soooooo important, just aren't any more.  My God, my family and my friends are what are absolutely in the forefront now.  

You have a lot to look forward to in the next several months - good things - and that is where your focus needs to be. - Please don't take that wrong - I'm not coming down on you. k?  But you still have a full life ahead of you and if it becomes necessary for you to do treatment, you CAN do it.  You obviously have a whole boat load of support from your family and friends, as well  as an untold number on this (and other) board.

You Can do this - you Will do this - and you will be a beautiful, smiling mother at those weddings next year.   We are here for you.

DEB - I must have missed a post somewhere.  I did not realize you were so recently dx.  I am soo sorry,  but just by what I have read in your posts, I know that you can and will get thru this.  The initial shock is not a bit fun, but life does go an and we Will make the best of it.

Take care, both of you, and God bless

Geri

[debnevada]

Geri, you are the sweetest thing. I've been treating for 23 weeks on Friday. Been around the board since my diagnosis in February.  The only thing "recent" about me is that i was an acute and got this last november.

But you are a sweetie for being concerned.  I appreciate it. I was "reliving" that for mioumiou.

Thanks sweetie

[debnevada]

i see where you made the mistake. you thought i found out on Friday. No, angel, I found out "on a Friday".

;-)

[kuumaka]

My second post - my first post provided me so much information I keep checking in from time to time.  I'm 55, diagnosed 4-5 years ago, acquired Hep C 1b back in the 70's from massive blood transfusions (3X).  Was feeling fairly healthy when first diagnosed, but started down hill @ 3 years ago due to a combination of menapause, divorce, job stress and the power of suggestion (NOT TO BE IGNORED!)

On week 11 of TX and feeling OK most of the time.  Nervous about making the 1st hurdle - the 2 log drop by week 12.  It is not the end of the world.  Even if my Hep C doesn't respond to treatment, I'm still more likely to die of some unrelated health problem than liver failure.   It really isn't the end of the world, just the beginning of another of life's many adventures.  Delaware?  Grew up there but happily live Hawaii now.

[rosedarling]

Very good advice here.  We have all been in your situation, scared to death when first diagnosed.  Read  the forum here, go to the archives and read about treating and living with HCV and others experiences.  Find a good hepatologist and get a biopsy to find out what state your liver is in.  If they advise treatment, as you will find here by reading, it is doable.  Not always pleasant,  but doable.  Having supportive family and friends is great, will help tremendously.  You have not been handed a death sentence, you will absolutely be attending your children's weddings and if it is in the cards for your kids, babysitting future grandchildren.  You have found the right forum for information, support and a smile.  Ask all the questions you need too, there are very informed and friendly people here to help.  

[sfwandwow]

u have a long life ahead

[Alady1620]

Your post took me back.  I was devastated when I found out.  Terrified at first and then I went into denial for a while.  You'll come around.  Expect to go through all the stages of grief.

If you feel you need anti-depressants, then you should see a mental health professional.  They are better suited to find the ones you need and it will give you someone to talk about the hepatitis.  

I am sorry for your diagnosis.  Please remember it is not the end of the world.  Many people treat and clear the virus.  Everything is going to be ok!

[R Glass]

Reading your post brought back memories that pretty much all of us went through. When I first found out, I did as much research as I possibly could. I would read 10 things that would give me hope and then read 1 negative thing and forget everything positive I read. I found this forum and was amazed at the knowledge I gained in such a short time. We were all scared at first. The more truth you learn, the stronger you get. The odds are far more in your favor than you know. My guess is, you will be going to your Grand Children’s Weddings. I have no magic words for you to make the fear go away but I promise, it will leave soon.

[Alady1620]

One piece of advice...Don't tell anybody you work with or for that you have hep c.  At least, not anytime soon.

[meki]

Miou - HCV can cause depression.

The liver screens and cleans toxins in your body - at times they build up and you can have symptoms or signs of many different things. So be aware that you might be feeling sad or depressed not because of your disease --- but because of chemicals in your body.

Pay attention to a healthy liver diet. (You can find a few of them on the web).

You can also talk to your doctor about Anxiety or Depression meds.

NOW... ARE YOU LISTENING????

HMMM???

OK - little girl - pull your bootstraps up. Put on your WADERS.... PUFF up your chest... and PAY ATTENTION!!!

HCV is NOT an instant death sentence for almost every single person - upon hearing about it.

It can cause a multitude of problems... But most people have it for 20 or 30 years --- without major problems...

When you learn more --- You will understand all of this...

BUT GRAB AHOLD OF YOURSELF --- LEARN --- DO NOT PANIC --- Get out of the weepy phase... Straighten your spine... and decide what you need to do...

Will you treat... Will you need to treat?
How much damage do you have?
How high is your viral load?

Read through all of these posts on this board - learn more about this viral disease....

Learn where you stand --- before you panic.

OK?

Chances are - you'll be just fine... Everything comes together - you learn that it isn't an instant death sentence - you'll figure it all out.

It's overwhelming at first --- but YOU CAN do it.

Be strong...

We've all been where you are right now..

Ask questions... But mostly hang on to your sanity and your world...

Super hugs, welcome to the forum - there's a lot of info to be had here - and at a few other places, if you would like - we can supply the links... Alright?

Now - go get a cup of coffee - tea -- juice or water --- and get busy reading... Digest it in small amounts... take your time -- ask questions...

Oh ---- AND DO NOT FORGET TO LIVE YOUR LIFE!!!

Have a LOT of fun ---- Live every moment - and enjoy it.

Meki

[MiouMiou]

Thank you all for your love and support.  I cried as I read all of your caring messages.  I went to visit the new primary care physician this morning, he felt all around my liver today and he said it did not feel inflamed to him, but of course that was just a manual exam, and I have to wait till 9/4 to see the gastro and find out the results of the second blood tests.  He would not give me anti-depressants, he said that would disqualify me from being considered for treatment, he gave me xanax.  He was a good and caring doctor, and of course could not answer my question as to whether I will die from this - and of course I wanted him to say no. . . .so I just have to wait now.  I will take the xanax and all the wonderful loving advice I have thus far read and try to "normalize" my life as much as possible right now.  

[debnevada]

Taking an AD should NOT disqualify you for treatment, some GIs and gastros INSIST that you take it should you go to treatment.  

[mauilady]

We've all been through what you're going through, but learned that "die" doesn't apply... instead, we fight, with everything we've got.  Your chances of being run over by a truck are greater than dying from HepC.  Worrying about the unknown is so unproductive and actually has a negative effect on your health and well-being.  

I was diagnosed with this a year ago (I'm 55, had it 30-35 yrs), began Tx in January, finished in June and am going on with my life.  After my first visit with my gastro/hepatologist, I knew there wasn't anything to worry about as I was going to take the bull by the horns and knock the s--- out of him!

You're on the right track by losing weight; I lost 25 lbs pre-tx, so there wasn't any fat to get in the way.  Eat a healthy diet---lots of whole grains, no processed foods, no or very little sugar, lots of fresh fruits and veggies, and take milk thistle (but make sure it's standardized).  You'll be fine!

This is a wonderful forum; you'll always find lots of support here.

Aloha, Michelle

[outofgas]

I had hep-c 1a for over thirty years, the tx sucks but stick to it I did 48wks finished in Feb-07 just had my six month blood test it worked still clear, do your self a favor stop reading all the material that just talks about the worst that can happen and just hope you are one of the lucky ones just remember one  the day at a time good luck I will pray for you

[theflyjd]

I have had hep C for 25 years. I am 56. I have been on tx twice ('05 & '06-07) and I'm currently on Infergen. I have done 5 Marathons this year. The last one was 3 and a half weeks ago. The mind is a powerful thing. Don't talk it into the wrong direction. Good luck!!

[Alady1620]

Weird.  My gastro insisted that I start anti-depressants before treatment.  

Be careful with the xanax.  They are addictive.  I only take half of one on rare occasions.

[Teufelhunden]

Finished my 48 weeks June 8th. One of the best things I've ever done. Treatment isn't fun but it wasn't the monster I thought it would be. Some things we have no control of and it doesn't matter how or when or why. What matters is ridding your body of this disease. This isn't about anybody else. This is about you, and thats the way you have to approach it. I didn't do it for my wife or kids or grandkids. I did it for me. Everything else came after treatment was over.  Nothing else matters. Just you. You can't wish it away, you can't wake up and it never happened, you can't dwell on it and you certainly can't go back in time.   Was I scared? Hell yes I was!!  Then I found this forum and all my fears and tears were calmed when I realized I wasn't the only one in the world with this disease. Would I do it again?  Yes!  Your life changed when you found out. My life changed when I finished. You're going to do fine. Good luck! 51 yr old male. Former genotype 1a.