Author Topic: Please help feeling devastated!! Diagnosed 8/19 HEP C (Read 16313 times)

Feeling hopeless · « **on:** August 21, 2014, 04:15:57 pm »

Got the call Tuesday afternoon from my OB/GYN. calling with all my infectious disease results as i have always done them yearly cause i am an RN in the medical field. I almost DIED i had 2 hours left of work and it was the hardest thing to digest while having to still work. All negative but my Hep C came back "reactive" I cant fathom how I have contracted this disease. Yes I handle blood and always take precautions also never had a needle stick or ever have blood splash in my face. I work in a field where we RARELY see ID patients. I was just tested back in Jan of 2013 and ALL was negative. I recently got a new tattoo this march14' and can only think that maybe it came from there? Although when I was there I was neurotic about asking them to show me everything the clean needles the new ink everything. I am extremely upset about this diagnosis. I have a 4 year old son who I am now more worried about more then ever. regardless of how I contracted this nightmare. I am absolutely heartbroken. I've been in a monogamous relationship for over a year and he tested negative for everything. My MD was able to add on My liver enzymes to the tube of blood I had drawn and they were normal (is this a good sign?) and my viral load is not back yet. I am sick to my stomach not eating, barely sleeping and a complete wreck. IM terrified I am going to have a high viral load, I am terrified ill not respond to treatment, I'm terrified ill pass this to a loved one. I'm so upset I wont be able to have unprotected sex with my fiance. Someone please help me spread light on this awful disease I am heartbroken and in tears as I write this. I'm praying for a negative viral load but I've been told that's rare. and totally not my luck. Someone help

I know there is a chance I could eventually show a neg viral load after treatment but what are the chances? I'm 32 young healthy.....I'm so scared. haven't stopped praying. and wont.
hopeless!

Pelham123 · « **Reply #1 on:** August 21, 2014, 05:11:06 pm »

Dear Feeling Hopeless, it's normal to be shocked when you get this news. I can certainly relate. You will work your way through this. There are new treatments just released, and more coming that will knock the virus out of you in short order. The good news is you caught it so quickly! It's very slow to cause damage. I had it for 40 years without knowing it.

You are not alone. We are here for you.

Pelham123 · « **Reply #2 on:** August 21, 2014, 05:19:27 pm »

Hopeless, a high viral load means nothing. Don't scare yourself about that. High/Low it doesn't matter. It's the existence of a viral load that counts. Pay more attention to what "Genotype" you have. That will determine what medications they will give to you.

My husband and I were married for 23 years, and all that time I had HCV without knowing it. He tested negative. It's hard to get. It's not considered an STD.

Feeling hopeless · « **Reply #3 on:** August 21, 2014, 05:31:27 pm »

Pelham123 Thanks so much for your post. reading a lot on this forum has made me feel so much better. truly. I worry about so much and I cant control this anxiety I am feeling. Thanks for taking the time to reply to me. have you been treated and are now "cured"? I always wanted another child and now I worry about that. I have had the worst year ever and this was just the icing on the cake. I know it will take months to finally come to terms but just the things I read today on this page have helped me feel and know I am not alone. ty so much.

Pelham123 · « **Reply #4 on:** August 21, 2014, 05:48:46 pm »

Helpless, I am 4 weeks into 12 weeks of treatment with Sovaldi/Ribavirin. I just found out I had the virus 2 months ago. Pretty scary. Don't fret, there are a lot of people in this forum who have gone through treatment and been cured.

Good news!! There is tremendous progress in pharmaceuticals. Mostly because of the baby boomers (like me) who got it in the 70's and 80's before they even had a name for it. I had yearly checkups and blood work, with no anomalies in blood or symptoms until 2 months ago when my liver enzymes were elevated. It's slow moving.

You are going to be FINE!

rainbowray · « **Reply #5 on:** August 21, 2014, 05:55:28 pm »

Hi Feeling,
I have had hepc for 43 years, my wife of over 35 years is negative. My 3 children i raised are negative. So it is rare to just pass it. Don't let anyone use your nail clips, or razors, or tooth brush..etc. Common sense anyway. It takes a long time for the virus to actually cause damage. I am just now getting a sovaldi/ribavirin treatment
after 43 years of knowing I have this. You will be ok, cause when the new combo treatment is out in about 6 months or so, it will be a breeze, and very effective.
It takes on average about 20 years before you will feel the symptons. since your enzymes are normal now, it is a good sign as the liver is functioning normal.
I have done 7 weeks of treatment, and feel I am getting healed. My viral load of almost 3 million is undetected, my liver and blood panels have returned to normal.
The treatments now are good, and only going to get better. You have hope of a normal life. For now, just eat a good diet and take care of yourself.

Mike · « **Reply #6 on:** August 21, 2014, 06:14:51 pm »

Hi Feeling Hopeless,

Learning about a Hep-C infection can be pretty darn scary. This is a common reaction, and most of us have experienced plethora emotions.

When I was diagnosed in 2000, I thought I had one foot in the grave and the other one was following close behind. I had a very low chance for a cure, and started a 48 week treatment, which was horrific. The treatment didn't work and I reserved myself to the fact that I would never clear the virus.

Fast forward to 2014, and there has been an explosion of new treatments, with cure rates of 90% and beyond.

This is truly the golden age for Hep-C treatment and, I know this will be hard to believe, but the best time to be diagnosed with an infection.

The treatments are so effective now (and tolerable), that a cure is almost a guarantee!

There's a few steps you'll have to take, including knowing your genotype and viral load.

Once these are known, a treatment regime can be tailored for you.

Please take comfort in knowing that there is real hope now with the new treatments.

These new drugs, most notably Sovaldi, are true miracles!

Hang in there, take a deep breath and know a cure is around the corner.

Best wishes and don't hesitate to ask any question in this forum. There's a lot of folks with a lot knowledge and experience here.

Mike

Feeling hopeless · « **Reply #7 on:** August 21, 2014, 07:28:54 pm »

Thank you to everyone who responded! I do feel better now not 100% obviously but hearing all your stories have made me feel like I have hope. Still
Don't know my viral load is an the anxiety surrounding for the weight is killing me. I just got a call from my Dr who informed me there wasn't enough specimen for the viral load and I'll need to be redrawn. Absolutely balled my eyes out as I was suppose to be getting the call with my viral load today so now I'll have to wait (another set back) until next week. How truly upsetting! I just wanna get the ball rolling here And the wait for answers is beyond frustrating!! I'm trying to be calm but it's near impossible. She did mention again that my liver enzymes were normal
And that was a good thing. ;( well see. A whole other week with anxiety and depression. How awful.

Pelham123 · « **Reply #8 on:** August 21, 2014, 08:16:07 pm »

Dear Feeling Hope, I hear you. Waiting sucks. Yet, waiting is the fact of life with HCV. It's all about having blood drawn and waiting for results, waiting for approvals, waiting for medications, waiting for the cure. HCV exposed how much I needed to learn, and am still learning, about patience. Please be kind to yourself.

virgha828 · « **Reply #9 on:** August 22, 2014, 03:18:05 am »

Hi feeling hopeless

Every person here went through how you are feeling right now you are not alone in this.
my doc said viral load means nothing unless you are being treated. Then it gages weather or not your responding to treatment.

If there were ever a good time to be told you have this virus it would be now. The treatment and success rates are amazing and have come a long way within the last 20 years!
I do understand your fears especially about your children. My daughter was two and my son was

eight when i found out. Take all of the necessary precautions and you will get through it.
Find out your genotype and your treatment and cure will be just around the corner!

There are so many wonderful people on this forum to bounce things off of and to get you though tough moments.

you are in my thoughts and prayers tonight

Virginia

Krissy · « **Reply #10 on:** August 22, 2014, 11:49:36 am »

I totally understand your feelings. I was devastated in 2000 when I was diagnosed. I had donated blood and was told it was positive. Years before in 1988 or so I donated blood and was told my liver enzymes were elevated but I called my doctor and she said not to worry about it. This was before Hep C even had a name. I had no idea how I contracted this disease. I never used needles, had a tattoo or a blood transfusion. Now I believe it was from sharing a straw when snorting cocaine in the 80's.
I also was beyond worried that I had given it to my husband and children. They were all tested and negative. I have taken general precautions by not sharing toothbrushes etc. but I continue to have unprotected sex with my husband of 22 years.
You will be okay. It is a good time to find out and obviously you have not had it for long. The normal liver enzymes are a good sign and you are young and healthy. The treatments are tolerable and successful. I just finished 10 of 24 weeks on Ribavirin and Sovaldi for Gen. 3 and my viral load was undetectable at 4 weeks.

As hard as it sounds, try not to let the disease control you. Knowledge is power. Educate yourself and take charge. You are in the right place to do just that and you are not alone.

There is always hope,
Krissy

Feeling hopeless · « **Reply #11 on:** August 23, 2014, 12:38:36 pm »

Thanks virginia & Krissy for sharing your stories.

Krissy it took you many years to finally have your virus to be non detectable? I'm assuming more then one treatment? That's what I worry about most. I don't want it to be years of treatments etc. :0( and even though u are now "non detectable" you still need to take precautions to not infect others? So many questions. I'm sorry just trying to wrap my head around this.

lporterrn · « **Reply #12 on:** August 23, 2014, 12:51:35 pm »

Feeling Hopeless - What you are reading doesn't apply anymore. The old treatment vs the new treatment is like the difference between the days when we had penicillin and when we got it. Penicillin was a game changer. We are 7 weeks away from an entirely new approach for curing hep C.

Perhaps it is best not to wrap your had around this until you know if you need to wrap your head around it.

Bucky · « **Reply #13 on:** August 23, 2014, 06:43:38 pm »

Hello Feeling Hopeless, I wish you could change your user name to Feeling Hopeful because that is how you should be addressing your prognosis. To echo Lucinda, the meds we have now are a game changer. The cure rates now is around 90-94% with the current new meds that were just approve within the last year. The newest ones that will be out in the fall have a cure rate of nearly 100%.
Try to chill until you have more test results because stress is bad in general. You are going to be OK believe me.
Bucky

Krissy · « **Reply #14 on:** August 23, 2014, 06:56:14 pm »

Actually this is my first go at treatment and I was undetectable after 4 weeks. I had no symptoms, no cirrhosis etc. all this time so I decided to wait for an Interferon free treatment. So glad I did. This treatment, Sovaldi and Ribavirin has been pretty easy for me. Just a slight headache and trouble sleeping. Very manageable. I am genotype 3 so my options are a little different. I believe the treatment in the pipeline is for type 1 which is what most people have. Sorry you have to wait for your results but you will know soon what your best options are.
I hope you are feeling a little less anxious now.
Krissy

Feeling hopeless · « **Reply #15 on:** August 24, 2014, 12:05:40 pm »

Thanks Krissy! I am feeling a little better! I'm so happy to hear after 4 weeks you have an undetectable viral load. That's wonderful news. Ill keep you all posted on my progress come next week! any prayers would be greatly appreciated. Prayers and thoughts to all you as well!

Picnic · « **Reply #16 on:** August 24, 2014, 02:19:06 pm »

hi feeling hopefully hopefull! This is the best time for treatment! Take it from one that had cirrhosis ,liver cancer, transplanted 9 years ago and now on sovaldi and olysio to rid myself of the dragon! Good luck and you have my prayers!

TrimKing · « **Reply #17 on:** September 04, 2014, 07:05:18 pm »

I was diagnosed back in the 90's... probably got this in the early 70's.

Last year started an 8 week clinical trial of a combo pill of Sofosbuvir and Ledipasvir... my viral load dropped to zero in the first week, now 1 year later still completely virus free.

Absolutely no side effects except extreme relief after trying anything and everything over the last 20 years while I was getting sicker and sicker each year.

My wife of 30 years and all my grown children never caught this from me.

There is finally hope for this disease... more now than ever before.

Mike · « **Reply #18 on:** September 04, 2014, 07:10:36 pm »

Amen, TrimKing!

Mike

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Author Topic: Please help feeling devastated!! Diagnosed 8/19 HEP C (Read 16313 times)