When did I get Hep C?

[esar]

I had surgery in early June of last year, surgery which involved a scope/camera.  Not sure if they're the same thing.
Last summer I decided to stop taking my hypothyroid meds and take herbals.  Not long after I experienced crashing fatigue.  My doctor tested my thyroid and it was slightly lower, but not much.  I went back on the thyroid meds.  The awful fatigue stayed. 
Then I started getting dizzy all the time.  Back to the doctor in October.  She said I probably had a virus and it would disappear in a few weeks.  Well, it didn't.
I was experiencing fatigue, dizziness, depression, low energy, dark urine and lack of motivation for anything.
My doctor gave me all sorts of blood tests, xray and an MRI.  She couldn't find any explanation.
In November I went on vacation.  I usually am high energy but I wasn't.  I still experienced fatigue, lack of energy.  Then I got drunk on very little alcohol.  That had never happened to me before.
I knew I was sick.  I remember looking at my face in the mirror one day and thinking to myself that I looked so sick.
I was feeling so unwell some nights I would go to bed thinking I'm gonna die and not wake up tomorrow.
I went back to the doctor and she decided to give me an STD blood and urine test.  It was a Friday afternoon - I vomited in the bathroom at the doctor's office.
For three days I vomited, had diarrhea and could not put anything in my stomach or I would vomit.  I drank water & ginger ale.  I lost 5 pounds over those 3 days and never put back the weight.  In total, I have lost 19 pounds since this whole nightmare began. I had no appetite back then and I have no appetite now.  I have to force myself to eat.
The blood test came back negative for everything except positive for Hep C antibodies. This was mid-December.  I had to do a 2nd test.  Same thing.
The doctor told me I had Hep C and now she understood all my symptoms.  She said I had been seroconverting which I have learned is the body fighting off an infection.  I was told I had acute Hep C.
She sent me for an ultrasound.  My liver was okay, not enlarged.
By the time I got to see a liver specialist and find out I had Hep C for sure was in March.  I had a fibroscan and the results showed I had a 2.7 score on a scale of 1 to 75 and apparently there is no damage as far as liver hardness/cirrosis goes.
I was told I now have chronic hep c.
My genotype is 2.
My liver enzymes are normal, but my viral count is high.
I am on treatment now - Solvadi and Ribavirin. Day 18.  Lots of side effects, but that's another posting.
Can anybody hazard a guess as to when I got this?  Do you think I got it in the surgery?  I never used intravenous drugs, my ex of a 12 year relationship doesn't have it and I don't have tattoes. 
I searched the internet and it says seroconversion happens from 2 weeks to 6 months after infection. My liver doctor won't discuss the issue with me, but my regular doctor told me last week that my thyroid never showed crashing on all the tests I took.  She thinks it may have been the symptoms of a hep c infection - seroconversion.
Anybody?

[CureSeeker]

Nope, no one can tell you when you got it.

Why worry about it?  How does it change anything to know when or even how?

The camera thing has been connected to it in theory (i.e. colonoscopy), however, I have read that the Hep C virus can live for 4 hours in dried blood. You could have simply stepped on a nail barefooted that an infected person had stepped on barefooted within 4 hours before you.

 It doesnt become nulified by simply reaching the air like a virus like HIV does. 

Hep C is spread by blood to blood contact, hence its association with IV drug abuse.  I saw an expert from LIJ Hospital speaking on it, and he said the only way it has been proven to spread is by blood transfusion but any blood to blood contact can potentially cause the infection - even microscopic.

If you know of a date that you had a blood transfusion, or you know you were a IV drug abuser, or you know you you had piercings or even a pedicure under unsanitary conditions, then you can try to pinpoint a date.  If not, its anyone's guess.

Some associate Hep C with the millitary, and there is a theory involving the air gun vaccinations used back in the late 60s and early 70s - but why drive yourself crazy with all this information like I have?

Like my doctor has told plenty of patients, "It doesnt matter how or when you got it - you got it!" LOL.

Get treatment, and try to think positive and happy thoughts. Best wishes!

[angelina]

Hi CureSeeker. I also have the same question - how and when? - and I can't figure it out. I had blood transfusion 6 year ago in 2009 but that's far after the blood was screened for the virus. Some doctors think its still possible to contract a virus as there is about 1 month period when virus is there but can't be screened. I remember I felt very tired but I had a new born so it wasn't weird to be tired. So it passed on and I was just recently diagnosed during routine preoperative check. I suspected a dentist also but can;t know for sure. But anyway I have it and that's all and I can't prove it was that blood transfusion or not. But sometimes I have a feeling I'd like to find out which unprofessionalism and negligence have done this to me....

[CureSeeker]

Hi angelina,

My story is kind of simular to yours.  In late 92 or 93 I had an ectopic pregnancy and ruptured fallopian tube that was initially diagnosed and treated like a miscarriage - to make a long story short. 

I took several units of blood by the time we got to the point of figuring out what was going on.  They saved my life.  It may not have been in a perfect straight line, but they saved my life.  I was released from the hospital on New Years Eve, and I have to say that that was probably the first New Years Eve in my life that I actually had a good reason to celebrate.

Fast-forward to 96 - 97 (maybe 98), the blood supplier has a blood recall.  I dont know why they call it a 'recall', lol.  Its not like you can say, "Oh yeah, here!  Take it back."  Anyway, I was tested for a number of things - HIV, HBV, HCV, HTLV I & II.  The only thing I tested positive for was what the recall was over - HCV.

I experienced the same feelings as you and probably the OP, and I actually did file suit, but as it would turn out, it was determined that I did not have a case.  It was okay that I did not have a case but filing the suit empowered me (as I was feeling hurt, anger, and like a helpless victim at that point) and gave me time to work through everything and come to terms with everything that had happened.  I could have filed suit against the hospital initially, before the recall, for the misdiagnosis that lead up to the blood transfusion, but I didnt.  I was grateful to be alive.

You are correct about what experts think concerning blood.  There is still today something like .07 percent chance of catching a virus (not just Hep C) from a blood transfusion.  I can see the truth in what you say about screening time as these viruses are constantly mutating and the method that can detect them today may not be able to detect them once that mutation starts.  The best science can do is try to predict future mutations.

There is also a less than 5% chance of contracting the virus during childbirth from your mother.  These percentages are small but indicate that nothing in this world is 100% perfect.  Ive also read that the medical profession has beefed up sterility procedures since HCV came to the forefront.

At first, experts thought Hep C was a STD because it was showing up in young people, but later determined that it is not a STD (except under very special circumstances).  They now find it to be most prevelent amongst the "baby boomer' population.

Although new to us today, it is said to date back at least 4500 years or something like that.  I guess they have found it in mummies or something somewhere to come up with that.

In the end, at least for me, the transfusion was not elective.  In the end, if I had been told about the virus possibly being in the blood, my choices boiled down to:

"Ms. CureSeeker - would you like to die now, or possibly die later from a virus in the blood?"

Im pretty confident I would have still eventually agreed to take the blood.

P.S. It's 7AM, and I just took my first dose!  My first step on the road to recovery! 

[angelina]

  Congratulations on your first dose! Good luck and wish you  a full recovery. Seems with new meds we have a pretty good chances to clear this virus.

Well our stories r really similar. I had blood transfusion after giving birth cause the doctor missed a piece of placenta left inside which bled badly and I lost a lot of blood. I was bleeding internally so by the time they realized it it was already a significant blood loss and doc have decided to do the transfusion. I was also almost dead and they saved my life yes, but if this mistake wasn't done at first place there was no need for any transfusion.  All the doc needed to do is AN ULTRASOUND to make sure nothing was left behind. ONLY THIS LITTLE.

Its great you at least filed a suit. I had this thoughts but I think in the place where I am its useless and I can't prove anything.

At that time I felt grateful for saving my life but the same time I was dying due to doctor's negligence.

Too much negative thought are circling in my head now. My mental state is pretty bad. This diagnoses fell on us like a nightmare. We tried to have another child and unfortunately a miscarriage happened and during the pre-operative check hcv came positive. Now I am so scared. We bought harvoni at our own cost hoping to treat this at once so we can have a healthy child. I am so scared if it doesn't work what i will do. I don't have years to wait for new meds. So I'll probably take a risk and try to get another baby even with little chance of transmission. Haven't really decided yet and praying for this virus to clear so I don't have to make that decision.

I am 1 month on treatment now and hoping for the best. But its being a lot of relapses on this forum which made me even more depressed as I thought it's 99% cure.

[CureSeeker]

Thanks Angelina!

I felt the same way about an ultrasound - that if my OB/Gyn at the time hadnt brushed me off, it could have detected the ectopic pregnancy before the tube erupted.  He simply said, "If you are bleeding it means you are having a miscarriage - there is nothing we can do.  Go home."

I did what he said  In the ER when I finally went (15 days after seeing my OB/Gyn) because I felt like I was going to die, they gave me a trans-vaginal ultrasound, but did not detect the problem.  They ran with the diagnosis of my OB/Gyn and gave me a D&C.  The ER Doctor was going to release me - an older experienced  nurse stopped him.  I wasnt improving.  She recognised the signs of internal bleeding and went over his head.

I guess God places living angels around when its not your time to go yet. 

Three years later I had an ectopic pregnancy again in the other tube, and my baby making days were done.  Both tubes were either gone or in very bad shape at this point, and my husband and I were advised to stop trying.  It was okay.  My husband loves me enough to stay with me at the price of not having a child.  For that alone, I would follow him into the bowels of hell, lol.

You have been graced with at least one child, and the odds are with you for having another.

I understand how you feel, but as you can see with me, an ultrasound may have still missed the problem.

Best wishes with your treatment and recovery!  Also, best wishes for working through these feelings and coming to a place where you are simply grateful for the life and blessings you already have.  *hugs*

[angelina]

I am so sorry to hear about what happened to you. This is really sad. Now compare to your story it looks like I want too much... But it is not so. I am practically an orphan. Was raised mainly by grandmother who passed away this November.(Thanks God I had her!!!) never had any bros, sisters, not even cousins... no family.  my daughter is all that I have.  and I don't want her to have as lonely and miserable life like I did...

And of course I am so grateful to God that I have her. otherwise it doesn't even make sense for me to exist. And its for her I would like to give a brother or sister cause I know how uneasy it is to be alone in this world.

But whatever God prepared for me I will accept and I already have a lot to be thankful for...

It was really good to hear your story and share mine. We have to be strong and we'll make it through!

[CureSeeker]

Angelina,

I am not trying to make you feel like you want too much.  You dont.  People just naturally want family and children and love and acceptance.  I too am an only child.  My husband is also an only child.  We wanted a large family, but it wasnt meant to be.  For us, there was a big weight off our shoulders once we finally were able to accept that fact - it simply wasnt meant to be.

I was just hoping that by sharing it would help you feel not so alone in life, and help bring you a little peace.  Fighting is good when it comes to disease.  Never give up!  Maybe those feelings help you continue to fight the good fight!

We are strong.  Your daughter will be strong.  If she finds a good man and has a family of her own, she will never be alone, just like you are not alone because you have her.  Can you think of any better reason to keep fighting than her?

Best wishes to you and your daughter!

[angelina]

  we r no longer on the subject.. hope the moderator will forgive us...

Thank you CureSeeker. Sharing your story definitely made me feel not alone and I even shared my story cause I felt connected... I know there r a lot of people out there like me and its great that we find each other and share. It makes a big difference... 

I still feel frustrated cause I m just newly diagnosed and still coming to terms with all this. I 'll find my peace just need some more time...

I think Hep effected my mental state a lot. I am really depressed but I feel i m going to be better soon.

I really don't have any other good reason then her to fight, but I think she is good enough and really the best reason lol 

[Karen3717]

@ Cureseeker.  Oh my goodness, my story is almost identical to yours.  Ectopic pregnancy in 1982 that went undiagnosed for 8 weeks.  Excruciating belly pain like nothing a 25 y/o could ever know.  Hemoglobin hematocrit dropped so low, Dr totally stumped as to source of bleeding, pregnancy test still positive.  What to do but exploratory emergency surgery?  Difficulty in surgery to control bleeding.... Sooooo 4 units of blood transfused.  This is likely where the infection originated, but one never knows.  Doesn't matter now.  Second ectopic pregnancy 2 years later but thankfully did not rupture like the first.  Both Fallopian tubes removed & eventual total hystectectomy 1986.  Not being able to have children at such a young age was devastating, but not nearly as devastating as having to live with Hep C for over half my life.  I eventually came to terms with being childless and 3 marriages later, have come to understand that it was "best" & just not meant to be.  BUT!!! We are all on a new path towards healing one of life's unfair blows & will soon be rid of the dark cloud that has hung over us for so very long.  I'm starting my last week of Harvoni (12 weeks) today & I pray it worked.  It will be so nice to start a new chapter of life.  There's just so much hope now for those suffering !  Your story really touched me and I have so much empathy for what you have endured.  Wishing you a successful treatment outcome.  Never stop fighting!

[CureSeeker]

Hi Karen!

Wow, your story is amazing, and very close to mine.  Looking at your siggy, you have certainly been through a lot over this infection. 

I didnt go for the peg-interfuron/ribavirin treatment, but if all this had happened to me back in the 80s, I probably would have.  I investigated it at the time I was diagnosed, and I had the opportunity to meet someone in the middle of their treatment and talk with a couple of other people that had finished treatment. 

I had also read that researchers were working on something that was geared to the viruses DNA and would geneticly alter it so it couldnt replicate.  The drug company (Novartis) was reporting a 45 to 50% success rate with the treatment, but patient's were reporting something closer to 20% on forums like this one.  I desided the treatment wasnt something I wanted to put myself through, after listening to people talk about the debilitating and even dangerous side effects, and I waited.

It didnt seem like much progress was being made for quite a while, and suddenly Im hearing rave reviews about these new drugs from Doctors and patients alike.

The next hurdle was getting the drugs, which I feel so fortunate to have finally cleared that one, and now Im onboard the Cure & Heal Train, lol.

God bless you girl!  I will keep you in my prayers.  You certainly deserve to be free & clear of this virus!


@ Angelina,

You will be in my prayers too - it made me feel good to see those smilies in your last post. 

[Karen3717]

Thanks for you response & kind thoughts!  Yes, it has indeed been a journey.  You are wise to have declined the interferon/riba combo.  I took 18 months off work because it was so awful.  By the end of treatment, I had to rest halfway up my stairs.  The worst was having to see a hematologist for the entire year due to the severe neutropenia it caused.  All water under the bridge but just know you made the right decision.  I always say, "desperate people will do desperate things".  That was one of them for me.

  Sounds like you have an excellent shot at a cure!

[Karen3717]

The rest of my post fell into the black hole.  Not unusual for me. Ha!  Anyway, I hope your first day of treatment goes well as those to come.  Three months will go by in the blink of an eye.  Take care.  Sending healing thoughts your way. 
Karen

[CureSeeker]

No worries Karen, lol.  Ive been living with what you guys call 'brain fog' intermittently for several years now. 

I wish I could edit my first post - the CDC reports the virus can live up to 3 weeks on environmental surfaces.  It seems it could be longer when it comes to protected surfaces like inside a syringe.  So sorry for the mistake.