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Post Info TOPIC: New to site
Loopy Lisa


Guru

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Posts: 895
Date:
RE: New to site
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Hi,

I am new to the forum and diagnoses, confirmed today. I have only told a few friends and they have shown me nothing but love and I don't feel dirty or bad about it. I have a viral count too of one million. I have normal functioning liver and was told not to worry about viral count. 1 Million is not low,but it is not very high either.

I am starting treatment this April, so virtually diagnoses straight to treatment. This for me is the best option. I understand your fear of treatment, I think this is a normal response, but the benefits far outweigh the negative. Whilst your on treatment, you liver has a chance to repair, bascially time out.

You won't get every side effect and the best advice I can offer this early on, is don't read the scary stuff splattered all over the net. My Dr. said to me, the people that are doing really well, have no need to write it all on the net, because they are too busy getting on with life.

The best thing for everyone right now, is new drugs are going to be available if we don't have success or react well on this treatment, there is something just around the corner. I spent two weeks scared out my wits with worry, had every symptom on the planet. One chat with the Dr. bang, they all disappeared. This taught me that fear is what the problem is, not what lies ahead.  Sure its no picnic, but if you get that day when you have finished your treatment and you never have to worry again, you'll feel so much better that you took this step. I read also thatnew drugs up and coming have a 90% cure rate. Also, I have chatted with people that have worked all through treatment 40 hrs a week, tough but manageable.

To ease your mind, there are some great things on youtube when you feel restless and need to relax your mind, from water flowing, to logs burning. My best friend gave me a link, I turned it on last night, and slept like a baby.

I was afraid what people might think when I told them, after hearing of people being shunned and all kinds of horror stories, actually people are the opposite. Don't get me wrong, I just selected the people that love me and I love and it was the right thing to do. So don't be afraid for support, we are all here for each other and hopefully you can find peace.

I think acceptence is the key. I have accepted I have it, accepted I am going to have treatment, accepted that I am gonig to have days I feel like crap.

Just remember, however much you feel alone you aren't. There are millions of us out there facing this, and we are fighting a worthy cause for our families, friends and for each other. I hope tonight you rest easy and try to talk to your fear. As soon as my fear left me, I realised I can do this and feel positive. A hug for you and everyone facing this, I wish you all a good nights sleep and peace in your hearts! x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
nurschic


Senior Member

Status: Offline
Posts: 143
Date:
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Thank you all for the kind welcome and encouraging words. I guess I am in the normal "greifing" process and I am working through it. Everyday I am better and better and looking forward to starting treatment. I emailed my GI Dr today with a whole list of questions, and he emailed me all my answers within a few hours! This made me feel more at ease with the starting of treatment. Im "planning" on starting about Mid June due to getting my son ready for graduation, after this Im free. Still not sure how to speak with my director about my Dx and treatment, but I know it must be done.

Again, thank you everyone and I look forward to many more conversations!

__________________

Dx:2007; Genotype 1; VL 1.4mil, start triple therapy (peg/rib/inc) 6/2/13 (Failed), Harvoni 12 weeks EOT undetected, 6 month EOT UNDETECTED!
turtles


Member

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Posts: 27
Date:
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 Hello and welcome nurse,

    Going through treatment will be a very hard thing to hide from you'r friends and co-workers. I'm a very transparent person,and had no problems telling my boss and friends up front.  By doing so it benifited me very much,My company worked with me and allowed me all the time off I needed for sick days. I missed over a month. Every one is different, some are ashamed,some are not so ashamed. I see no reasone to be ashamed, It's all apart of life,And there are worse thing out there. ( actually I concider myself lucky.)

 I wish you the best of Luck and hang in there, don't drinkdisbelief and listen to your doc,  This fourm is a good place to be........

       ---Ted



__________________

Ted...HCV genotype 1 cirrhosis stage 4  PEG,RIBA,INCEVEK taken off treatment after 20 weeks,low platelets,playing the waiting game..
JoAnneh


Guru

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Posts: 1077
Date:
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Put the plug in the jug!
Your determined spirit means
You are a fighter and you will
Give tx your all!
I was open about tx and have received
Lots of support.
I suggest use caution based on your personal
Life. I am a hairdresser and clients are still
Wanting me to cut their hair!
It's a personal decision to expose my disease
But only after much thought.
The first time on tx 12 years ago I told few
And I felt alone. This forum is AMAZING!
It is wonderful to have a community
Of others experiencing same feelings
And sx.
Tx is working for so many! We are blest
To have an opportunity to beat this disease:)
Welcome to the forum!

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
mallani


Guru

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Posts: 3398
Date:
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Hi and welcome Ranelle,

We have a lot of Geno 1's on the Forum, and many of us have done or are doing triple therapy with both Incivek and Victrelis.

Ask any questions you like and we will try to help. There is a wealth of information on the site- use the 'Search' button. Good luck.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Matt Chris


Guru

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Posts: 1782
Date:
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Hello Northern and welcome to the forum

There are many many benefits to be gained from the resources of this forum.

Many members here can provide insight and real help on the journey from people that have had the same questions and concerns.

Some members in the forum are a cornucopia of knowledge to demystify our day to day worries about how are bodies are reacting to the Meds. 

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Northern


Veteran Member

Status: Offline
Posts: 62
Date:
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Assuming from your forum name, you are nurse? I'm a nurse and I found my co-workers very supportive of me during treatment. Besides it would be hard to hide it from them smile

The time during treatment is not easy and you don't have to do it alone. It does help to have a good support group and to have a group of nurses having your back is great. 



__________________

1b, 3rd time around on treatment. Stage IV cirr. Undetectable at 8 weeks with Incviek. Been infected since the late 70s. 48wk treatment completed. Sustained undetectable. 
12Step Guy


Senior Member

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Posts: 413
Date:
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Welcome Aboard, we all have set course for the SVR Islands. Remember in case of trouble, we are all in the same lifeboat and will find ways to keep each other afloat. Sounds like you need more time to process all of this; you might try to find some trustworthy friends to share your journey with. I'm very open with friends, family and my AA squad about my HepC. Ive shared quite a bit about my past with a few co-workers who I trust. But then I've had years to come to terms with it. Whats most important is not who you tell, but getting the support you need to deal with the anti-viral treatment.

Captain B. Rash



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
nurschic


Senior Member

Status: Offline
Posts: 143
Date:
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Hello all! Im new here to the site, but have been dx with HCV genotype 1 for a few years. Once I found out that I was positive I stated seeing a GI doctor who just wanted to monitor my lab values and not do any treatment. At first I was very good about going to see him every 6 months, but after a few years of "we will just wait and see" I stopped going. I didnt go back to see him for about 2 years. During that time I did not live the best lifestyle (ie: drinking) and at the begining of this year I recieved a letter from the doctors office saying I should come in for a visit. I though a visit would be a good idea and set up an appointment and requsted lab work before I went in to see him. Figured this way he had some lab work to work with and I wouldnt just waste a visit with no clinical data for him to work with. Well that was Friday and my lab values came back that shows my VL is in the Mil, before I was in the 100K, and my liver enzymes were elevated. Needless to say, I was not surprised but still devestated. He has recommended that I look into treatment now. This was just a wake up call of how stupid I have been over the past few years. Just because I felt healthy didnt mean that I was, but yet I acted like nothing was wrong. Im very upset with myself and very scared in what the future has to hold for me now that treatment is on the board.

What scares me the most is actually telling my friends about my dx and the support that I will need during treatment. The only person that has known about my dx has been my husband, other then that I have not told anyone. ALthough I have total support from my husband, I still feel like I am facing this totally alone and on my own. The doctor is talking about triple therepy and has given me some great drug information on the different additional medications. Right now Im leaning on Victrelis because it seems that it has less side effects. I work 3 12hour shifts a week and can not afford not to work. Im scared to dead and have cried myself to sleep every night so far! 

This is going to be a huge lifestyle change for me in many ways. I am a very stuborn person who hates to ask for help and has the mentality of "suck it up and it will pass". Im not use to reporting any ill feelings or asking people to help me. Im usually the one who deals with everything with a level head and even temperment. 

I have been reading posts on here and have found some comfort in everyones stories. I have a feeling that this website is going to be a key component in my treatment success. Thank you all for sharing!



__________________

Dx:2007; Genotype 1; VL 1.4mil, start triple therapy (peg/rib/inc) 6/2/13 (Failed), Harvoni 12 weeks EOT undetected, 6 month EOT UNDETECTED!
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