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Author Topic: New to the battle!  (Read 522 times)

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Offline Nanato6

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New to the battle!
« on: November 30, 2018, 08:02:05 pm »
So glad i found this forum! i was diagnosed in Aug 16 2018. I was angry, shocked, really feeling awful, so much pain and fatigue, the criteria for exposure and testing is not accurate! I considered myself with no exposure then i started reading the possibilities of blood PRODUCTS! i have it narrowed down to 3 for direct blood product exposure: 1955 Vaccines DPT & Smallpox, 1974 Rhogam shot, 1987 Gamma globulin injection against Hep A exposure, also about 18 lesser exposures like I worked in a nursing home and home health for about 10 years, ears pierced, surgeries dental work etc ..

in my younger years I was the party girl that everyone made fun of because I didn't drink or do drugs..i married the guy who told me he got 'high on life and didn't need drugs'!

i am also a ruptured brain aneurysm survivor (May 2014). i often wondered why i survived the rupture, to be tortured so..i thought it was to help my #3 child through her pregnancy with intracranial hypertension. But..

About the guy i married, he also tested positive on Aug 29 2018 and told all our kids (5) to get checked (still waiting on #2 child to be tested) all neg so far except hubby, he is f4 type 1a. He saw an infectious disease doc, had some blood drawn and will have his meds (mavyret 12 weeks) as soon as the insurance says ok. This is why I survived! He has no symptoms at all! he does take a nap every day he can. His ast and alt are better than mine! He would have never known to get checked.

What about when hubby gave blood in the early 80's and never got a call back about bad blood. Of course they checked it for Hep b but wouldn't non a or b show up at that time?

I have seen a gastro CRNP and will see gastro MD Jan 18 2019! So far I have had liver scan, extensive blood draws, declined a colonoscopy and pray I don't need an endoscopy! I have previously lost my appendix, gallbladder (lost my voice for 2 years due to improper tube down the throat), sneezed and my lung collapsed and then the brain rupture which requires mra every year..so i am not too keen on any extra invasive procedures!

I am 1a, M28V mutation, F2 fibrosis.  I do not know how the meds will affect the vessels in my brain, which include fibromuscular dysplasia (FMD) I am hypersensitive to most meds and only take bp meds.. I use CBD oil for pain and anxiety..

This helps, i'm not so angry, just sad for not being able to do all i could before. i am hopeful the meds will kill this bug. i've already had 4 life extensions! Can i really get one more?

Mom to 5
Nana to 6




Offline Lynn K

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Re: New to the battle!
« Reply #1 on: November 30, 2018, 09:16:37 pm »
Hi and welcome! I’m so sorry to hear of all your struggles.

One thing I can speak to is donating blood in the 80’s. I was very likely infected in 1978 tattoo in a GI bar in Germany when I was in the Army in a guys apartment. I did also party a bit at that time as well so one or the other.

I donated blood a couple of times back then in Germany and also when I got back to the states in the early 80’s. That was eventually how I learned I had hep c. I donated in 1989 when they had just approved a blood test for the hep c virus that year. That was the fifth time I donated I believe. Prior to the test for hep c virus being found in 1989 that was one way to get infected was through blood donation.

While not common there is a small risk of sexual transmission of hep c. While the CDC does not recommend barrier protection for long term monogamous couples and I don’t think I can recall someone in a long term relationship having been infected in that way the odds are not zero. But really, that is all kind of moot at this point anyway.

I think you may be a cat and have nine lives because these new meds are very effective at curing most especially those who have no prior treatment without cirrhosis I think your odds are about 99% or better. So in that estimation this would be life number 5 you still have 4 to spare.

Best of luck let us know if you have any questions we can try to help you with.
« Last Edit: November 30, 2018, 09:23:01 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 Nanato6

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Re: New to the battle!
« Reply #2 on: December 01, 2018, 12:38:29 am »
Thank you for your service! And your prompt reply.  I was interested in any info on the mutation. We're both 1a, I asked hubby's dr if it was the virus or me, he wasn't sure,  I'm thinking the virus.  Funny thing he asked how many kids we had,  told us he won't wait to treat hubby, they usually wait 6 mos, he wants us to be treated together and to use a condom! We giggled about that..also what was different after 1964 or 65, that people born after that don't need to be screened? Thanks!

Offline Lynn K

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Re: New to the battle!
« Reply #3 on: December 01, 2018, 01:08:32 am »
Vietnam era veterans are a high risk group as well as boomers. But surely people on the near edge of the demographic should be considered one would think.

Your doctor wants to treat your husband soon because of his F4 fibrosis score which is the highest score possible for liver scarring. Has your doctor discussed the significance of this score with you both? What test did you both have to determine your fibrosis score? Is you husband going to be referred to a hepatologist (liver specialist)?

There are I believe 16 total genotypes 1a, 1b, 2a, 2b, etc genotype 1 either a or b are the most common in the US.

I liken genotypes to say varieties of the flu like swine flu, bird flu etc. Just without the interesting names.

The good news is that with cure of hep c even livers with higher fibrosis scores may have some improvement with time. And certainally no further liver damage from hep c will occur. I assume your husband has stopped all alcohol if he does drink.

Here is some lay person general information about hepatitis C and the liver from the VA

https://www.hepatitis.va.gov/patient/index.asp
« Last Edit: December 01, 2018, 01:15:51 am 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 Lynn K

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Re: New to the battle!
« Reply #4 on: December 01, 2018, 01:13:21 am »
“Hepatitis C Virus Genotypes

An important variable for all patients with chronic hepatitis C virus (HCV) is the "genotype" of HCV with which they are infected. This is the strain of the virus to which they were exposed when they were infected, often many years prior to their evaluation, and it is determined by a simple blood test. Genotypes of HCV are genetically distinct groups of the virus that have arisen during its evolution.(1) Approximately 75% of Americans with HCV have genotype 1 of the virus (subtypes 1a or 1b), and 20-25% have genotypes 2 or 3, with small numbers of patients infected with genotypes 4, 5, or 6.(2) Most patients with HCV are found to have only one principal genotype, rather than multiple genotypes.(3, 4, 5) Genotype 4 is much more common in Africa than in many other parts of the world, genotype 6 is common in Southeast Asia, and each area of the world has its own distribution of genotypes.”

https://www.hepatitis.va.gov/provider/reviews/genotypes.asp
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 Nanato6

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Re: New to the battle!
« Reply #5 on: December 01, 2018, 01:32:22 pm »
No discussion of the score of fibrosis or any indication yet to see a hepatologist.
we both had the LIVER FIBROSIS, FIBROTEST-ACTITEST PANEL (FIBROTEST)(Q1696)
my other blood tests normal except ALT 53. Hubby was normal except glucose a little high (maybe from BP meds?)

Another question: i have these flareups of pain. lower back for 2 weeks, it came on quick and left just as quick. a month later it was my neck, lasted 6 weeks then bam, gone..now it's the lower back, AGAIN! it was after the first flareup my PCP looked at me and said were gonna do a hep test. is this a common thing with this virus or not?


Offline andrew j

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Re: New to the battle!
« Reply #6 on: December 01, 2018, 05:21:09 pm »
Hi Nanato6,

More medical testing?
That looks to be the way forward for you at the moment?

The pain?
I'm not sure - I'm not a Dr ... but I got some serious pain probs because of an [initially undiagnosed] bacterial infection.
Maybe that's something you could look at?

All the best with the next little while.

(The new Hep C meds are usually fairly well tolerated).

A.

(P.S. In case you want to reply - I can only get to a computer 2 or 3 times per week at the moment).

Offline Lynn K

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Re: New to the battle!
« Reply #7 on: December 01, 2018, 06:24:03 pm »
Glucose test results are only valid when fasting so if he ate before the test the glucose score means nothing. Only fasting glucose can be used for diagnostic purposes.

I was having liver biopsies every five years after I was diagnosed with hep c in 1990. In October 2014 which was just before I treated with Harvoni Nov 2014 to May 2015 I had a Fibroscan test to check my fibrosis score in case my insurance wanted to confirm my F4 score with something more recent than my 2008 liver biopsy. A Fibroscan is a machine similar to an ultrasound except it kind of makes a thump to determine liver stiffness. Results are about equal to fibrosure for accuracy.

Has you doctor discussed your husband having an upper endoscopy and being immunized against hep A and Hep B if he hasn’t been? As well as having the pneumonia vaccine and making sure he has his flu shot every year. My doctor had me get all that done when I was diagnosed as F4.

AST and ALT are often slightly elevated in hep c. Elevated liver enzymes mean something is bothering your liver but not how much liver damage has occurred or is occurring. Once you are both cured of hep c likely your liver enzymes will return to normal range. Very likely your first blood testing on treatment will show you liver enzymes as normal because you have the virus on the run :)

Your back pain could be anything I tend to doubt it is hep c related. If your doctor hasn’t said so yet your preferred pain medicine is actually Tylenol just use caution to not exceed the recommended daily dose. Tylenol at recommended dosage and duration (occasional use) is perfectly safe for the liver. Just make sure if you take a multi symptom reliever whether or not it contains Tylenol (acetaminophen). It is so easy to accidently take too much if taking a multi symptom coldmexicine and then additional Tylenol.

I was diagnosed as fibrosis score F4 January 2008 if you have any questions. When is your next doctor visit?
« Last Edit: December 01, 2018, 06:30:09 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 Nanato6

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Re: New to the battle!
« Reply #8 on: December 03, 2018, 09:56:05 am »
Lynn K;
As far as i know we are finished with tests, i have an brain MRA in march which they scheduled at the same time as the gastro doc on Jan 18.. Hubby's A1C was 6.5.
 
i did have a pulsed wave and color flow Doppler of upper abdomen. same as fibroscan? 

the waiting is so long! the fatigue is so awful!

we don't drink or take any meds but vitamins and BP meds. i think hubby will be fine with the antiviral meds and i'm hopeful i'll do ok with them.

the links were informative, thank you!

andrew j: i think maybe inflammation not really infection and it just might all be in my head!

Offline Lynn K

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Re: New to the battle!
« Reply #9 on: December 03, 2018, 01:26:14 pm »
The Doppler I am assuming was part of an ultrasound.  On my ultrasound they also do a Doppler where they can make sure that my blood flow is going in the correct direction inside my liver.  I’ve had the Fibroscans done at my doctors office. The machine produces sort of a thump you would feel it. 

Here is a short article from hepmag about Fibroscan

https://www.hepmag.com/blog/fibroscan
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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