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Author Topic: Recently Learned I Have Hep C  (Read 2748 times)

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Offline kim77

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Recently Learned I Have Hep C
« on: September 27, 2018, 12:57:27 pm »
Hello, I am new to the Hep C thing. A little background I am married with 3 wonderful children. I am 40 years old, when I was 6 years old I was in a accident and had many transfusions and lost my right leg. This was in 1983 before blood was tested. I have undergone several surgeries as a child and have had 5 surgeries as a adult. I have been seen regularly by my Dr. for high blood pressure and routine lab work. I had my gallbladder removed in 2012 due to only inflamation, no gallstones found. (believe it was hep C causing inflamation, now that I know) The reason I am telling you all of this is I am furious that I am just finding out. I have the risk factors and I have had high liver enzymes for 5 years now and wasn't tested until now. I feel partly to blame because I shouldn't have assumed I had been tested, but I did. Anyway I am scared! I have many symptoms and have for along time, but my Dr. kept saying fatty liver disease (which never made since being I am only about 25lbs. overweight) I have bowel changes, pain in right rib cage, lack of appetite, no yellow skin or eyes, bruise easily, bloated, very tired. Does this mean I have a severely damaged liver or can you have symptoms like this and it still be minimal?  What is the risk to my husband and children? Anyone else feel there Dr. missed it?  Also, I take Lisinopril with water pill for my blood pressure, have been reading this can harm the liver, should I be taking it? ( I know to ask my Dr, but wondering if anyone eles is still on it with hep C)
« Last Edit: September 27, 2018, 12:59:25 pm by kim77 »
Kim77

Offline lporterrn

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Re: Recently tested hep C positive
« Reply #1 on: September 27, 2018, 09:22:14 pm »
Wow - you have quite a story and every reason for what you are feeling, especially the fury! I'll try to answer your questions. Most of us have experienced some of what you are feeling. It's all new for you, but it does get better - much better!

Let's start with some good news. Hep C is curable, and if you are cured before you have cirrhosis, you have a great chance of putting this behind you. Treatment is fairly easy for most people.

More good news - as a woman AND someone who acquired this as a child, you have a very good chance that this hasn't progressed. The symptoms you are experiencing are vague enough to not be alarming. What I would want to know at this point is what is your platelet level (it is part of the CBC test)?

Now the bad news - You could also have fatty liver. It's not only about the weight - it is a lot of factors.  And it tends to get worse after hep C is cured if the factors that caused it aren't corrected. BUT, let's walk through that together if and when you get there, OK?

Back to good news - lisinopril is fine - better to have your BP under control. Pretty much all meds say they damage the liver. Just take everything as directed, don't drink, and now is not the time to start taking a bunch of supplements. When it comes to the liver, less is best.

More good news - Unless you are engaged in very kinky sex (like stuff with chainsaws and razor blades), risk to your husband is nearly zero.

But, here is the part no woman wants to hear - your children need to be tested. The risk is about 5% that they have it. I won't bother to tell you not to freak out while waiting for the news, because you will - every mother does. But 5 % is very low.

It would be a great idea if you made it clear that no one should share anyone's toothbrush or cuticle scissors or razors - very, very, very small risk of transmission - but it is a good lesson to teach every family member.

Back to the good news - you aren't alone. We will help you through this, just like others helped us through this.

In the meantime, try to live the healthiest you can. Statistically you got another 50 years on this body, so do whatever you can to help it live well.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline kim77

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Re: Recently tested hep C positive
« Reply #2 on: September 27, 2018, 10:09:46 pm »
I had a 2nd blood draw on Monday and spoke to the nurse yesterday she confirmed the hep C was positive but said the Dr. would need to look at it before she could tell me the genotype or anything else. I have a ultrasound Oct. 1st and see the specialist on Oct. 3rd. Thank you so much for replying to me. You have been very helpful.
Kim77

Offline kim77

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Re: Recently tested hep C positive
« Reply #3 on: September 30, 2018, 01:35:25 pm »
ok so I got my results and they don't look good.
Hepatitis C RNA PCR, Quant.  966,000
HepC RNA Log   5.9 IU/ML
Ast   167 u/l
Alt   178 U/l
Bilirubin   1.3 mg/dl
Albumin 4.1 g/dl
Alkaline phosphates   146 u/l
Platlet count   124
Hep C 1a

Break it down for me please.
« Last Edit: September 30, 2018, 01:43:23 pm by kim77 »
Kim77

Online Lynn K

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Re: Recently tested hep C positive
« Reply #4 on: September 30, 2018, 02:50:40 pm »
Hepatitis C RNA PCR, Quant.  966,000
HepC RNA Log   5.9 IU/ML
These two numbers are the same number expressed on two different number scales, regular counting numbers and the logarithmic scale. Your viral load is 966,900 copies of the hep virus circulating in every mL of your blood. This is a relatively low viral load but viral load really can fluctuate higher and lower often. Really viral load does not relate to severity of illness. For reference my viral load before treatment was 2.4 million

Ast   167 u/l
Alt   178 U/l
Mild elevations of ALT and AST are very common in hep c infection.

Bilirubin   1.3 mg/dl

I found this below your Bilirubin may be only slightly above normal but such a small elevation likely is not clinically significant ask your doctor for interpretation.

“Normal values of direct bilirubin range from 0 to 0.4 mg/dL. Total bilirubin (direct and indirect) range from about 0.2 to 1.2 mg/dL (some lab values range as high as 1.9 mg/dL). Medical literature sources have minor variations in "normal" levels).”

Albumin 4.1 g/dl

Your result is normal range.

“The reference range for albumin testing is as follows: The normal range is 3.5 to 5.5 g/dL or 35-55 g/liter.”

Alkaline phosphates   146 u/l

Your result is normal range.

“The normal range is 44 to 147 international units per liter (IU/L) or 0.73 to 2.45 microkatal per liter (µkat/L). Normal values may vary slightly from laboratory to laboratory. They also can vary with age and gender.

Platlet count   124
Your platelet count is slightly below normal range you should discuss this with your doctor.

My platelet count was 85 before treatment but has risen to 110 after I was treated and cured. Hopefully over time my platelet count will continue to improve.

“A normal platelet count ranges from 150,000 to 450,000 platelets per microliter of blood. Having more than 450,000 platelets is a condition called thrombocytosis; having less than 150,000 is known as thrombocytopenia.”

Hep C 1a
This is your genotype 1a it is the most common in the US. This will help determine the best medicine for you to take as some meds are more effective on different genotypes.

Hope this helps. Best of luck
« Last Edit: September 30, 2018, 06:11:53 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 lporterrn

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Re: Recently tested hep C positive
« Reply #5 on: September 30, 2018, 03:56:59 pm »
Hi Kim,
Your doctor's appointment is fairly soon (perhaps not for your peace of mind, but these days, we seem to wait a lot longer!). Your doctor will explain what all of these results mean. Lynn did a good job of breaking all of this down, and the ultrasound will be helpful.

I just want you to know that whatever the diagnosis is, there are folks here who have dealt with pretty much everything.

Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Mike

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Re: Recently tested hep C positive
« Reply #6 on: September 30, 2018, 06:10:59 pm »
Hi Kim,

Being diagnosed with HCV can be very scary, send the emotions in all direction and lead to a bunch of 'what if's or should haves'. 

The important thing to remember is that this is the golden era for HCV treatment. Many of us, myself included, had a grueling 48 week course of treatment to look forward to with minimal chances of clearing the virus - especially genotype 1a. 

Today, the chances of a cure are almost 100%! And the course of treatment is 8-12 weeks, with a single pill taken daily.  No more PEG shots, Ribavirin and the residual effects of this treatment, which was likened to chemotherapy in course and intensity.

Take a deep breath, a step back and know that HVC can be cured!!

Please don't hesitate to ask questions. This is a supportive community with a collective wisdom from each member.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline kim77

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Re: Recently tested hep C positive
« Reply #7 on: October 01, 2018, 05:51:27 pm »
Thank You , Mike. I really appreciate it. I had my ultrasound today and see the specialist on Weds. they said that the specialist should be able to see my results at that time, so wish me luck. Everyone has been very welcoming and informative. I think I just need to quit researching online and wait for my appointment, because I am freaking myself out.
Kim77

Offline lporterrn

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Re: Recently tested hep C positive
« Reply #8 on: October 01, 2018, 08:18:00 pm »
That is very wise Kim. I can't tell you how many times I misdiagnosed myself - and of course, it was always with something awful. Now my motto is, "Get the facts first, then freak out." All in all, I've never had to freak out since the facts have always led to a solution.

And yes, you can bet that we are wishing you the best of luck and will wait patiently with you for the results.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Mike

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Re: Recently tested hep C positive
« Reply #9 on: October 01, 2018, 09:26:41 pm »
Hi Kim,

I know it's hard - but wait and talk to your specialist. I remember when I was first diagnosed. It was in 2000 and, after finding out that I was positive, I had one foot in the grave. I was scared as heck and the only thing I could think about was "this is going to take me out. I'm checking out." I had to wait 3 months to see the specialist which seemed like 3 years.

It wasn't until I spoke with the specialist, however, that I had a glimmer of hope, as HCV was termed the 'silent killer' back in those days.

The specialist allayed my concerns with knowledge and the expertise he provided me.

I'll never forget what he told me: "Mike, you may die with this (HCV) - but you're not going to die from it." That made me feel so good!

That was back when treatment was shot, after shot, after shot with little chance to clear the virus - especially given my clinical picture.

Today, the news is so much better. The treatment is so much easier. The cure rate is so much higher (almost a 100%)! It is truly a new day!

Best wishes, Mike

 
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline KimInTheForest

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Re: Recently tested hep C positive
« Reply #10 on: October 01, 2018, 11:36:31 pm »
Good luck with your Wednesday specialist visit, Kim77, and the rest of your journey on this road. You will get through this!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline kim77

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Re: Recently tested hep C positive
« Reply #11 on: October 02, 2018, 10:13:43 pm »
Thank You, everyone. I am impatiently waiting for my appointment tomorrow. I will update when I know more.
Kim77

Offline lporterrn

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Re: Recently Learned I Have Hep C
« Reply #12 on: October 07, 2018, 12:56:15 pm »
Hi Becca C and everyone interested in this topic - I started a new thread with Becca C's entry so it didn't get lost in this thread. It appears here: https://forums.hepmag.com/index.php?topic=5517.0
 under "Recently learned I was hep C positive."
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline kim77

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Re: Recently Learned I Have Hep C
« Reply #13 on: October 07, 2018, 05:35:12 pm »
Update. I seen the specialist. She said the ultrasound showed some bumpy areas that could be scar tissue. I have a liver biopsy scheduled for Oct.12th. I need to get my insurance straightened out, I have Medicare AandB. But no prescription coverage. I can sign up for a Advantage plan on the 15th. It won't be effective until. Jan 1st. She wants me to try Harvoni. I am a little nervous about the biopsy, I like to read to much online.
Kim77

Online Lynn K

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Re: Recently Learned I Have Hep C
« Reply #14 on: October 08, 2018, 12:27:36 am »
I had either 4 or 5 liver biopsies over the years. Some were a snap some were not so much.

Is it not a possible to have either a Fibroscan a non invasive test similar to an ultrasound but with a sort of thump to estimate liver stiffness or a fibrosure blood test that can also estimate liver scarring?

Not hearing much these days about people having liver biopsies. Ask your doctor if a fibrosure blood test could be done instead of the biopsy is my suggestion.

But if you have to do the biopsy make sure you have a driver so you can be sedated. I did it once with only a local. Never doing that again if I can help it lol
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 kim77

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Re: Recently Learned I Have Hep C
« Reply #15 on: October 08, 2018, 10:50:15 am »
I will call and ask, Thank You! I thought we were waiting until I had my insurance straightened out to do anything but I got a call Friday saying she had scheduled me for the 12th for a biopsy, that is really all I was told. When I logged into my patient portal the appointment reminder says no food or drink past midnight and to bring a driver.
Kim77

Offline KimInTheForest

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Re: Recently Learned I Have Hep C
« Reply #16 on: October 08, 2018, 11:23:48 am »
Good luck Kim! As Lynn said, biopsies aren't used much these days to simply evaluate degree of liver fibrosis or scarring before starting Hep C treatment, since there are less invasive ways to get the same information now. Maybe speak to your doctor before the 12th and ask her why she has ordered a biopsy instead of the more standard fibroscan test or fibrosure blood test to determine liver fibrosis. It would be interesting and useful to hear her reason. Maybe, for example, she wants a better look at the "bumpy areas" seen on ultrasound.

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Online Lynn K

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Re: Recently Learned I Have Hep C
« Reply #17 on: October 08, 2018, 01:34:22 pm »
No food or drink and bring a driver means you will be getting sedated so that means you will probably not remember much about the procedure. Just take it easy for the next day or two afterwards.

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 kim77

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Re: Recently Learned I Have Hep C
« Reply #18 on: October 12, 2018, 10:47:23 pm »
I had the biopsy today. i am in some pain when I take a deep breath. Otherwise not to bad. I do seem to be somewhat bloated, hoping that is normal. I won't have the results for 7 to 10 days, going to be a long wait.
Kim77

Online Lynn K

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Re: Recently Learned I Have Hep C
« Reply #19 on: October 13, 2018, 01:48:15 am »
Glad to hear the biopsy went well. They should have given you a sheet listing symptoms to look out for post procedure.

But if you have any concerns you can give your doctor’s office a call to make sure all is well.
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!

 


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