Just diagnosed- terrified and alone.

[DayLyn]

I was just recently diagnosed - March 2006.  1a.  In BC, Canada.

I've finally gotten the courage to post, but have been reading posts here for weeks.

I feel alone in this - the stigma is great, and many people are ignorant or uneducated, or both.

I'm being screened for treatment next Tues.

My question was - Pegasys or Peginteron?  Any opinions or suggestions would be welcome.

[sunspot]

I hope you see this post as it is a bit old and I missed your reply in Sept. I never hear of underweight being a factor in treating. Over, yes but not under.


bowdeen
Why don't you post at the top of the more active threads?I ask because not many folks are bottom feeders, like me, and you will get more responces that way.
I hope you are well today.
Dana

[bowdeen]

hi i am new here too i posted a couple of times here. i am in bc canada too.hope tou are doing well.my treatment starts jan 2.this is a great place to come and get support and lots of information.good luck.your in my preyers.

[DayLyn]

Thanks for posting.  I have had my treatment pushed back, which is a real downer.

My doctor thinks I'm a little "underweight" and wants me to try and gains a few pounds before starting.

We are meeting next tuesday to do the needle training.  I will be weighed on Friday, and maybe set a new date then.

:(

Daylyn

[sunspot]

Your first shot is tommorrow. Let us know how it went. I have my fingers crossed that you have no sides.
Dana

[DayLyn]

Hi again Donna....
I did post my e-mail earlier- feel free to use it.  I know how hard it is to feel alone - but u r not.  U have me.  Anytime.  Pegasys is the standard treatment for HCV, along with Ribavirin.  I have to keep it short here - I'm at work, but please do send me an e-mail.

Keep me posted on the Dr. and labs, and such.  

Yes, I do have some sx.  mostly sick to my stomach and fatigue.  I also have very sore bones and achey muscles.

I've been somewhat depressed as well, but have to keep your chin up and smile on your face......

Take care.  I hope I hear from u soon.

Daylyn

[ex-city-slicker]

Hi Daylyn,

I have been watching for your response. I start reading through some of the other postings and find it upsetting some times.  I had blood work done @ my PCP to confirm the the DX. The PCP made an appointment for me w/the specialist. I have no idea what to expect. I have tryed not to think about it, and have been keeping busy. What is Pegasys?  Do you have symptoms?  I have lived in NH almost 3 yrs.  I am from Phila.  I moved to NH for some peace.  I like the mountains. I live w/someone. We have been together 6 yrs. He is supportive, although I have been spending too much time alone on the weekends, because he is working. I don't have any close friends. I have work friends, but  I would not  share my HVC Dx with them. I am going to go hiking, w/a few co-workers on Sunday.

Take Care,
Your in my thoughts, and I do pray.

Donna

[DayLyn]

Good morning Donna.

The dr. went well.  I am very pleased with my new specialist.  It took me a few tries to find one that I felt comfortable with.

We discussed all the treatment options (there aren't many), and decided that Pegasys is probably the one for me.  I will be seeing him again, prior to starting treatment, so I have some time to think of any more questions.  

My start date is still Sept 22nd.  I will keep you posted on how that goes, and what is happening.

I remember waiting for that first appt. - what a horrible few weeks that was.  I didn't get much info. that first time, the Dr. spent about 5 min with me, told me to go get some blood tests, and come back in 6 weeks.  Boy, was I devastated!

I hope this is not the case for you.  Where are you at?  Have you had any blood work done yet?  Do you have a specialist?  I hope you're hanging in there.  Do you have support at home? A Where do you live?

Take Care. I'll keep you in my prayers.
Day

[ex-city-slicker]

Hi DayLyn,

I was thinking about you.  How did you make out at the doctors?  & how was the SPA?  My anxiety level is alittle high, I think it will be until I see the Doctor on 9/28.  

Donna

[DayLyn]

I know what you mean about needing the day off.  I spent one whole day at the spa - just cause.

I was exactly where you are about three months ago.  Gosh, can I ever feel your pain.

I found out from routine bloodwork prior to heart surgery.  I was worried about everything under the sun, but never, in a million years did I think I would have hep c.

I go see the specialist tomorrow, and yes, I have tons of questions - all written down - three pages full.  I am to start tx Sept 22nd.  I will keep you posted for sure.  I would like nothing more than to have someone to go through this with.  People in our lives who don't have hep c just will not ever understand.  Please feel free to e-mail me @ ***@****.

I will add you to my prayers tonight Donna.  Funny - I was never religous....

[ex-city-slicker]

Dear DayLyn,

Pleas call me Donna, as that is my name.  I was very happy to see your response, it made me fell better, almost made me cry. I see a gastro doc. on 9/28. I have been very emotional all last week.  I was just DX on Wed., but I got the news in the mail,last Sat.  I applied for life insurance & was rejected. When I read the letter, it felt like I was given a death sentence. I have a positive outlook on life & have overcome many things.  This is just 1 more to add to the list.  I went into some of the chats rooms on other sights, and felt worse, afterwards. I want to connect with someone through this who will understand, and stay tough.  I think that is you! It great to meet you, please stay in touch.  Your doc. appointment is before mine, I'll be thinking if you. Are you going to write down questions for him/her. I have been checking information online like crazy. Today  I' m going to give myself a break and go out to buy a new pair of shoes!

Your new friend,Donna

[DayLyn]

It's nice to not feel all alone...  

The news is hard when you first get it, I guess it takes a little while to get used to it.  I still haven't.  I am going in on Tuesday to discuss which treatment the specialist thinks is best.  Will be staring on Sept. 22nd.  I am halfways excited to get started on killing this thing and halfways completly terrified.

Please keep me updated, and let me know what is happening with you - we can go through this journey together.

I wish good luck, comfort and strength to you!

Day

[ex-city-slicker]

Hi, I just got DX last week.  I also am terrified and did feel alone until I found others on line. .  I cryed off & on all last week. Have you dicussed TX w/your docotr yet.  What has helped me over the last week , is understanding HEP c is not a death sentence, but it is going to be a battle.  I'll be glad to be part of your support system as I start my journey to battle this V.

DS

[ex-city-slicker]

Hi, I just got DX last week.  I also am terrified and did feel alone until I found others on line. .  I cryed off & on all last week. Have you dicussed TX w/your docotr yet.  What has helped me over the last week , is understanding HEP c is not a death sentence, but it is going to be a battle.  I'll be glad to be part of your support system as I start my journey to battle this V.

DS

[beamishboy]

what if the medicine is insulin??

[DayLyn]

Thanks for the supportive words.  How far into treatment are you?  It's great that you have family to help you out!

I live alone with my kids.  My family live in another province, too far away, and very busy with their own lives.  

Some days it's really tough, and others not so bad.  I've found out that I don't really have that many good friends.

The second you freak out a little they all seem to disappear.  That is the part that's really getting to me.  I moved to BC away from my family 15 years ago.  When the ex and I split, I was truly alone, but it was ok cause I had great (not) friends.  Since this all came about, I've realized that I don't really have any great friends.....

I'm a bummer - I'm always tired, and can't go out "partying".  I'm naseous alot of the time - so no road trips for me.  Basically, I'm just no fun anymore....

Sorry for whining - it's been one of those days.
:)

[FlGuy]

You'll probably hear from Rocker on that spoonful of sugar comment.

[DayLyn]

I'm just curious - why would you have to take treatment for 72 weeks.  That's a very, very long time.  How in the world did you cope?  I thought that 48 weeks was the longest tx.
Are you SVR still?
What is your genotype?

Thanks for the thoughts - I appreciate it.

[Forseegood]

Glad you mentioned the happy chats and goofyness as well as everything else....I thought they were going to go the way of the platypus...if they go, I'd go, this place would be far, far too serious an informational site that I could go get elsewhere anyway....I like the fact that we can mix it up here a little bit...makes it entertaining, like the inimitable Mary Poppin says...a spoonful of sugar will make the medicine go down...with qualifications of course, we need a little control and discretion along with everything else...

And I could never understand why some people think this type of banter would somehow eclipse the straight hep c info, this place is screaming with hep c info and always will be...hope youre well...

[Snookmiester]

You are definately sick my man, sick I tell you!!! LOL

[Tater-ToT]

LMAO.... Thanks for that vivid mental...
I invisioned Rosanne in that movie when she played that character with the hairy mole on her face.... Gack!
:0

[DayLyn]

I just wanted to say - I read your news yesterday, and added you to my prayers last night.

Today, you are on my post, with kind words and compassion for me - what character you have.  There are few people that I have met thus far in life that will measure up to a guy like you.

You are a phenomenal person - and I am grateful to have had the opportunity to talk with you.

Best of luck to you - with such a positive attitude, I can't help but know deep within, that good things will come back to you.

[DayLyn]

You are right!  I have spent the last 15 years teaching my children that what other people think doesn't matter.  I guess I have to take my own advice....

I can guess that everyone here has probably felt this way (alone, afraid and emotional) atleast once.  It's nice to know that I'm not alone.

You all are a godsend.

I liken it to being all alone on a little tiny raft in the middle of a huge ocean with nothing in site, and then realizing that there are thousands of other people rowing toward you.....

:)

[Kalio1]

Hope you keep visiting here, it can really help. As to the people who judge you...bear in mind at least one out of every 10 of them has Hep C too they just dont know it yet. Hold your head up high and remember you dont need OR want judgemental, self righeous people as friends! There are lots of people with Hep C that were infected when they received blood products prior to 1992. People were infected thru vaccination guns and in many other settings, the general public is totally uneducated about it. Its bad enough to find out you have it, you dont need any more stress! Glad you joined us here.

[DayLyn]

Thanks to everyone!  I cried reading your replies.  Oh, to be accepted.  

I have three children and an ex.  My family all live about 14 hour drive away.  My kids are 10,13 & 15.  They are wonderful, but are kids, so just want what they want, and don't understand why mommy can't do it all.  

I live in an upper middle class neighbourhood, in the Fraser Valley and it's enough of a stigma to be a single mom here - having hep c ....well, people are cruel.

Time to move, perhaps :)

I have been reading this forum for weeks - the kindness and support here is extraordinary.

Thanks again.