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Author Topic: Hello and have some questions.  (Read 428 times)

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Offline JuliaG

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  • Posts: 4
Hello and have some questions.
« on: August 15, 2019, 01:19:57 pm »
Hello everyone and thank you for a lot of information I found here.

Doctor called yesterday to confirm that my viral load is there so I have Hep C for sure. I kind of hoped I might be in 25% but nope :(((( My story started in March when I had my well woman exam. My blood pressure was elevated so Doctor did a regular  blood test before giving me meds. My enzymes were elevated so he sent me to draw blood for Hep C testing. In June I found out it was reactive. The whole month went by before I found courage to call them just to find out my blood was "rejected" and no one bothered to call me and let me know I need have my blood redrawn. Finally I had it done again on July 31 and yesterday all was confirmed.

I am 45 yo female. Never did any drugs in my life, no tattoos, never smoked. Never had unprotected or other then usual sex .  Doctor asked me if I have any idea how I could get it. The only plausible explanation I could find that when I gave birth to my son way back in Eastern Europe ( I am originally from there) I was given a big blood transfusion in the hospital. Could it be from manicures and pedicures?Probably not...

I am so very worried because though my lifestyle is very healthy I did drink wine for the last 4 or 5 years which I loved. I had no idea that I was not supposed to be drinking that wine!

My health issue is high blood pressure ( runs in my family)  and  I am taking hydrochlorothiazide and lizinopril for that,  and it works just fine so it is under control. Very active and maybe 5-10 pounds overweight.    I have a tenderness to the right and up from my belly button from time to time.   I have read that liver has no nerves so how come we still feel discomfort in that area?

I do not know what type of Hep C I have or how bog my viral load is yet ...My doctor put a referral to gastroenterologyst so have no idea how long it might take...All I know for now from my online chart  is that my  enzymes are elevated ( ALT - 175. AST - 110 and Platelets - 119)... I already know that Lynne mentioned that low platelets is a bad sign so I am freaking out...
Anyway - thank you so much for listening...This disease has such a stigma - I cant tell nobody about it other than my family...My husband is fine and he will get tested next time he will see his physician ... Still have to talk to my son who is 25 hoping  that  I did not give it to him...

Offline Lynn K

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  • Posts: 4,286
  • Get tested, get treated, get cured, fight Hep c!
Re: Hello and have some questions.
« Reply #1 on: August 15, 2019, 08:07:02 pm »
Hi Julia and welcome

I’m betting it was the blood transfusion. Prior to 1990 there was no test available to screen for hep c virus and I believe it may have taken longer for this testing to be used everywhere.

As far as testing your family, for long term monogamous couples transmission of hep c is very rare the US CDC does not suggest the use of barrier protection (ie condoms) would need to be used for these couples. Household transmission is also very rare. If somehow you did have hep c when your son was born the risk of transmission during birth is only about 5 percent. So it is unlikely anyone in your family is detected.

Mildly elevated liver enzymes are very common in hep c infection. It only means that something is irritating your liver it does not relate to how much liver damage has occurred. Viral load also does not relate to liver damage or to difficulty of treatment. Knowing your genotype is mostly important to know which treatment is best for you but the new meds are great at treating most genotypes. For those who have not previously been treated with no liver damage the odds of cure are higher than 98% in most cases.

It takes decades of infection for hep c to cause liver damage and not everyone with hep c will develop liver disease. I’ve read only about 20% of people infected for 20 years will develop liver disease. However, as you noted a below normal platelet count can be associated with the beginnings of portal hypertension caused by liver disease. Yours is only slightly below normal and it is possible to turn liver damage around with cure of hep c.

Liver disease is not the only cause of low platelet counts. Causes of low platelet production include:

aplastic anemia
vitamin B-12 deficiency
folate deficiency
iron deficiency
viral infections, including HIV, Epstein-Barr, and chickenpox
exposure to chemotherapy, radiation, or toxic chemicals
consuming too much alcohol
cirrhosis
leukemia
myelodysplasia

So you could simply need some b-12 so don’t jump there just yet. Even if you do have liver damage or early cirrhosis just know I was diagnosed with liver cirrhosis in Jan 2008 and I’m still here. As I said with cure of hep c we have a chance our liver scores may begin to improve with time. Several people here were diagnosed F4 fibrosis score (meaning cirrhosis) but after cure have seen their fibrosis scores decrease to F3 or even F2

Fibrosis is best diagnosed with either liver biopsy, fibroscan a test similar to an ultrasound but the machine produces a sort of thump to estimate liver stiffness, or a blood test called fibrosure. You will likely be having one of those tests along with abdominal ultrasound to evaluate your liver to see where you stand.

But just know your family is likely fine and not infected, you can and will be cured.

Let me know if you have any other questions and best of luck

Lynn ;)
« Last Edit: August 15, 2019, 08:12:02 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline JuliaG

  • Member
  • Posts: 4
Re: Hello and have some questions.
« Reply #2 on: August 16, 2019, 09:05:09 am »
Thank you so much Lynn for your response and your kind words! Every word is much important and appreciated.

Yes, my blood transfusion took place in 1994 in Russia and soon after I saw an article in local paper that a person who donated blood in my city in 1994 had HIV and nobody tested him and his blood was given to people. I went myself and tested for HIV, thanks God it was negative but I will not be surprised that Hep C was there as well... Horrible.

Anyway, The registered nurse called me on Wednesday to find out if I need counselling because I was just diagnosed. I was at work and said thanks but I am ok because I did a lot of reading myself. Thanks to this forum and online materials. Is it common for people with Hep C to get counselling?

Waiting for appointment is long from what I gathered reading this forum. My doctor said if I do not see a referral status online by next Wednesday I should call them. So far nothing. We have Tricare and getting all treatments at the hospital on military base and in many cases they are very rigid to send people to other clinics or doctors.

Will keep writing here with anything new. Thanks again and you guys have a good day :)

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,286
  • Get tested, get treated, get cured, fight Hep c!
Re: Hello and have some questions.
« Reply #3 on: August 16, 2019, 01:21:15 pm »
As far as counseling that was very nice of them to offer. It seems a lot of people when first diagnosed especially as they had no idea something was wrong can get understandable very upset facing a potentially serious medical condition that they don’t know when or how they contracted, how it has effected their health and if they have put their loved ones at any risk so it can be quite an emotional roller coaster. But you are the first one I had heard being offered counseling. I think that is great they would even suggest that.

Yeah specialists have longer wait times for an appointment especially for a first appointment could be a month or possibly two. I see my hepatologist once a year and try to make my appointment two months beforehand.

Best of luck
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline JuliaG

  • Member
  • Posts: 4
Re: Hello and have some questions.
« Reply #4 on: August 18, 2019, 11:00:58 am »
Thanks a lot Lynn :)

I agree it was very nice. Not everyone goes online and does a research.

Nothing to report so far. Referral from my doctor did not come trough yet and I will contact them on Tuesday again.

Have a good Sunday everyone :)

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,286
  • Get tested, get treated, get cured, fight Hep c!
Re: Hello and have some questions.
« Reply #5 on: August 18, 2019, 12:12:13 pm »
Really a lot of people do research online but the go to web sites with misinformation and get themselves freaked out. Also some folks have anxiety issues. But really anyone could become shaken on the news they have an illness they had no idea they had.

I remember getting a letter from the blood bank on a Friday telling me I could no longer donate blood because I had hep c. Because it was Friday I had all weekend to wonder what that was all about couldn't call my doctor to make an appointment until Monday. I guess maybe it was a blessing there was no internet back then so I couldn’t learn anything about hep c until much later. I didn’t know it could attack my liver or that at that time there was basically no treatment. I got the letter from the blood bank in November 1990.

Hope you hear back from your doctor soon seems like waiting is one of the hardest parts.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline JuliaG

  • Member
  • Posts: 4
Re: Hello and have some questions.
« Reply #6 on: August 19, 2019, 09:21:21 am »
I can totally see it Lynn, Getting a letter from a blood bank out of the blue would be super unexpected and tough...In my case I had to gradually prepare myself - first elevated enzymes, then Dr telling he wants me tested for Hep C,  then being reactive and it took almost 2 months ( in my case because of my rejected blood) to confirm.. :(

 


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