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mallani


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RE: new to forum needing someone to respond
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Hi Babette,

Welcome from me as well. You've already had some good advice, so relax and realise that HepC is not a death sentence. Most people can now be cleared of the virus. At your age you won't have much (if any) liver damage and probably can wait for the new 'easy' drugs. Get your Genotype and Viral Load and let us know. We are able to answer any questions you may have, but try to find a good doctor, experienced in HepC treatment. You're among friends. Cheers.



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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
TN99


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There is a stigma about this virus without a doubt. The forum has some good post about how and who to share your diagnosis with to help you make your decision.

Of course I told my wife, I also told my boss, but I've known him years, have history and I thought that treatment would affect my ability to work (it didn't.)

I haven't told my mom, siblings, or best friend. I've lied to coworkers and friends about my frequent doctors appointments and minor lifestyle changes.

You really only have to be honest with your doctor and your spouse/partner.
Its really up to you who you share with, but in my opinion stay very mindful about who you confide in and always keep a good cover story ready for the prying busy-bodies.

__________________

Geno 3a, dual tx started 06/28/2013 Pegasys, Riba
VL 9.4mil, 4 week VL 318, wk8 UND, wk12 UND, wk24 EOT UND, 12wks post UND

~Tony~
TN99


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Hi Babette,

So sorry for your loss. I've lost a couple of close friends in the early 2000's when they let their disease go untreated.
You found a great forum full of caring people, encouragement and countless successes.
Now is the time to get educated. Listen to your doctor, read this forum and take the real life experiences from the people who post here.

Be careful with your google searches and internet 'research.' You will certainly read only the worst stories about treatment and promises of curing the virus without the help of medicines.

The diagnosis is certainly terrifying and overwhelming...at first.
Listen to the folks here; you will get honest experiences good and bad, along with helpful advice to get you through treatment.

We don't care how you got it, but we care about helping get through it.

I'm 44 and had it for maybe 15-20 years. I'm in my 8th week of 24 weeks of treatment and am one of the countless people that experience little to no side effects.
The medications are working for me and this virus can be beaten. You can do it too.

__________________

Geno 3a, dual tx started 06/28/2013 Pegasys, Riba
VL 9.4mil, 4 week VL 318, wk8 UND, wk12 UND, wk24 EOT UND, 12wks post UND

~Tony~
LUV2RYDE


Senior Member

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The virus can be treated and you can beat too. I am proof....I did a clinical trial and knock on would still remain UND. It's not a death sentence anymore. There are so many people on this board that will be able to answer your questions. Keep your head up and march on.



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
Cinnamon Girl


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Babette, my heart goes out to you after what you went through with your father.  I also lost my husband in much the same way, in 2007, and I know it`s like living through your worst nightmare, day after day.  But do remember that the vast majority of people infected with Hep C don`t die from it.  This virus can be treated, it`s not your fault you`ve got it, and it`s certainly not a punishment.

I went on to do my treatment at the age of 61, cleared the virus, and am now feeling better than I`ve done for years.  And I had been infected for a long time, 35 to 40 years.  Going through treatment has given me my life back, and many others here will have their own success stories to tell.

Give yourself time to adjust to the diagnosis, and you`ll see that it will be fine, and your children will also be fine.  You don`t need to tell anyone except the people who love you and care for you, and your husband is there with your for support.  Get a good night`s sleep tonight and things won`t look so bad in the morning.  Take care.  smile

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
daddysgirl


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Thank you Cinnamon Girl for responding, I am glad to know I'm not alone, I saw my father suffer for years, he finally got a transplant after being on the list for five years, six months after the transplant the doctors told him that(he also developed liver cancer) if they they new what kind of cancer he had they would never gave him a transplant, they gave him three months to live, he died 1 month later, I watched him waste, hallucinate, and die, I never got to say goodbye, because my stepmother did not call me until noon of that day he died at 2:30am.  I just had to tell my husband today he is very positive about the outcome, I am not.  I feel as though Iam being punished for my past.  Although I don't know how I contacted this awful disease, I am very educated about Hep C and I'm not judgmental.  I'm so scared I have young children 10 and 13 and I can't tell them, not yet anyway, I live in a small town, and if their dad were to find out it would be all over town. Like I said my diagnosis was today my Gp's nurse told me.  I thought my Gp would have told me, I thought he cared enough about me that he would call me in his office to tell me. I feel like my world has come undone.no



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daddysgirl
daddysgirl


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Thanks for responding, I've gotten past the crying, shock not so much, but I am glad I signed into this forum, too many people believe the stigma of this disease, as automatically being a "don't touch them" disease, its not and it can happen to anyone, my father got it from a tattoo 30yrs ago, I was never afraid to hug him or hold his hand, or clean him up, There are only two people that know right now and I trust them. I'm not ready to even tell my best friend yet. I will be getting my orders in the mail the nurse said that my liver enzymes were mildly high, so I do not know the numbers yet or what geno type it is, I know that they had put my dad on Magestoral (SP?) to help him gain weight, I hope they can help me with that so that I can be strong enough to get treatment as soon as possible. I soo appreciate all of you for the inspiration, that maybe I can beat this thing. Love and Prayers Cinnamon girl ,Kelli, luv to ride, and tn99



-- Edited by daddysgirl on Saturday 17th of August 2013 03:16:20 AM

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daddysgirl
Kellie


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Hi Babette and welcome smile

I remember when I found out in 2002. It was a letter in the mail from the blood bank calling me a bio-hazard and never to darken their doorstep again.disbelief How rude!

 I was very scared and shocked like you, at first, but after educating myself on my options and how to take better care of my body, I came to terms somewhat and stayed relativity positive about the whole thing. I agree with Cinnamon Girl, you are in good shape, young and the medical community is on the cusp of some very exciting developments for easy and effective treatments. Hang in there girl and keep us informed. Best to you K



-- Edited by Kellie on Friday 16th of August 2013 10:38:15 PM

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HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Cinnamon Girl


Guru

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Hi Babette, welcome, you`ve come to the right place for support and reassurance and I`m glad you`ve found us. 

I can understand how shocked and scared you must be feeling about your diagnosis, and I`m so sorry about the loss of your father, but please don`t imagine that you are going to die from Hep C, it won`t happen.  This disease is very treatable nowadays and you are young compared to a lot of us here who have gone through treatment.  You are quite light in weight, but there`s no reason why you shouldn`t be able to cope with treatment as you`ll be monitored by your hepatologist all the way through from start to finish.

You`ve done the right thing by making an appointment to find out about your genotype and treatment options, and once you have more information it will all become clearer to you.

Please don`t cry, you`re with friends here, and we`re here for you.  You`ll get through this and go on to live a healthy and happy life.  smile

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
daddysgirl


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Posts: 15
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Hi, I was just diagnosed today with Hep C, I am very scared, my father died from this disease in 2009, I feel as though I was just given my death sentence, I'm shocked, crying, and don't want to die with this disease, I only weigh 102 pounds and I am afraid I wont make it through treatment, I don't even know what geno type it is yet, I will be seeing a Hepatolgist at Wash u in St Louis Mo.cry



-- Edited by daddysgirl on Friday 16th of August 2013 08:18:35 PM

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daddysgirl
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