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Author Topic: diagnosed this week  (Read 1631 times)

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Offline musicana

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diagnosed this week
« on: July 05, 2018, 01:33:14 am »
I went in for blood work last week for an unrelated matter and I've been told I have hep C antibodies and the virus.  I am a boomer and asymptomatic.  I have no idea how or when I got this, and I've stopped trying to figure it out.  I'm just moving forward educating myself.  And so I am here.

I have not seen the doctor yet (appointment is for end of the month), so I'm having to live with lots of anxiety and stress as I imagine the worst. 

I am encouraged to read that there are great new drugs that have few side effects and are almost 100% effective.  However, the prices are crazy: $94,000 for a 12-week course of Harvoni!!!  Who can pay for this?  I'm scared I'll have to take cheaper and inferior drugs.

I also worry about telling my lover.  He lives out of town and I'll see him on Friday.  I feel like a leper.  Scared to tell him, but of course I must.

However, I probably won't tell too many of my friends lest they be scared to eat with me or hug me. 

There are several other things that have been keeping me up at night.  But these are the top ones. 

Any reassuring words would be greatly appreciated.

Thank you for being here.  Thank you for reading.

Offline Lynn K

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Re: diagnosed this week
« Reply #1 on: July 05, 2018, 12:18:52 pm »
Sexual transmission between long-term monogamous couples is extremely rare. In fact the CDC does not recommend the use of barrier protection in such couples. Although there is an increase sexual transmission risk for those who have multiple partners, in the presence of HIV, or for those who engage in rough sexual practices.

We have had many folks here where one partner had hepatitis C and the other did not so try not to worry. I hope your friends wouldn’t treat you any differently.  Hepatitis C is difficult to contract is not transmitted by hugging drinking talking laughing sharing a glass sharing utensils is a blood borne virus where the blood of an infected person must enter the bloodstream of an uninfected individual. The CDC does caution against the sharing of fingernail clippers, razors, and toothbrushes.

I assume you have health insurance. You can go the the Giliad pharmaceuticals website and get a copay coupon for Harvoni assuming that is what you are prescribed. The copay coupon leaves you with a $5 copay. My 24 weeks of treatment cost me $30.00.

There really are no cheaper inferior drugs. Some of the other meds have different prices but for the most part they are all highly effective.  The choice of which med to use is  primarily based on what genotype of hep c you have as some medicines are more effective than others depending upon your genotype. Genotypes have names like 1a, 1b, 2a, 2b, etc.... Basically, a genotype is which strain of the hep c virus you have.

Some who have had difficulty getting the meds from their insurance or don’t have insurance have obtained generic equivilents from overseas. Other countries have been allowed by the manufacturer to make generic equivalent drugs at greatly rediced costs. We have had a few people here take generic Harvoni and be cured.

But don’t worry about that unless you need to. More insurances are coming around to the need to treat people with hep c. There are avenues to take if you are initially denied treatment.

How are your liver enzymes? Are your ALT and AST slightly elevated above normal? This is common in chronic hep c infection. Also not to worry you but about 20% of people infected with hep c over 20 years may develop liver damage so you will probably have some testing to make sure your liver is still ok.

Best of luck let us know if you have any more questions
« Last Edit: July 05, 2018, 12:23:17 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 musicana

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Re: diagnosed this week
« Reply #2 on: July 05, 2018, 08:19:03 pm »
Thanks for your thoughtful and helpful response Lynn. 

To answer your questions and ask another one:

1.  I don’t know which genotype I am.  I’ll ask the doc when I see him at the end of the month. 

2.  My ALT and AST seem to be elevated:  ALT - 39 U/L; AST - 34 U/L.  I'm not sure what to make of these numbers.  Can they point to a chronic infection?  What does that mean since I’m completely asymptomatic?  Could this also be a clue as to how long I’ve had the virus?  I have no idea when/how I got it.  No needles, no transfusions ever.  Although I will confess to some rather frisky and reckless sexual behavior over the years.

Offline musicana

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Re: diagnosed this week
« Reply #3 on: July 05, 2018, 10:17:40 pm »
I just received results of my viral load which is:  HCV RNA SER PCR QN 991,000 (H)

I understand that this is high.  And my AST and ALT are high as well.   Yet I have no symptoms.  I feel great.

So, I'm not sure what these numbers mean.  Any thoughts would be welcome.

Thank you,
~ ~ Susana

Offline Lynn K

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Re: diagnosed this week
« Reply #4 on: July 05, 2018, 11:41:26 pm »
The majority of people with hep c have few to no symptoms. The most commonly reported is some vague tiredness. Having very slightly elevated liver enzymes just slightly above normal is also pretty standard.

I never really felt any symptoms even though I was infected for 37 years. I really only notice some symptoms of my liver cirrhosis that being some lower leg swelling (edema) and easy brushing. But otherwise I feel fine. I have other symptoms but they only show up in tests but I don’t feel them. Like I had enlarged blood vessels in my throat called esophageal varicies but I never felt them. I have had cirrhosis since Jan 2008

Having elevated liver enzymes simply means something is currently irritating your liver. In your case hep c is irritating your liver.

About 25% of people initially infected with hep c will clear the virus on their own. If you haven’t cleared the virus within 6 months after initially infected then you are considered chronically. Being infected for more than 6 months is the definition of being chronically infected.

There is no way to know when you were infected unless you can point to a specific event.

As far as your viral load a normal result is not detected so any viral load would be considered high (above normal)

You viral load in the grand scheme of things is relatively low.

My viral load before I treated was about 2.4 million which is a moderate viral load. The highest I recall was about 9 million.

Hope this helps :)
« Last Edit: July 05, 2018, 11:45:44 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 musicana

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Re: diagnosed this week
« Reply #5 on: July 06, 2018, 12:19:05 am »
Thank you so much Lynn for all that info.  I'm trying to educate myself so I can be prepared when I see the doc at the end of the month.  What you've shared is tremendously helpful! 

But I guess I'll be nervous and focused on this until I see him no matter what.  So many things to worry about.  Yet I find in general that the stuff I worry about the most is the stuff that happens the least.  So in that way worrying is maybe a good thing? 
; - )))

Again, thank you for your time and attention.  I've read articles online.  However, nothing beats the support, encouragement and knowledge of someone who's been there.

~ ~ Susana

Offline musicana

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Re: diagnosed this week
« Reply #6 on: July 06, 2018, 12:25:37 am »
P.S.  I just looked at your history that you posted.  Wow!  It’s been a long haul for you and you probably took those nasty drugs they used to prescribe.  I also noticed that you’ve been free since 2016.  Congrats!

I think it’s very generous of you to be on this board and offer others help and encouragement even though you’re past it all. 

So, I thank you again,
~ ~ Susana

Offline Lynn K

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Re: diagnosed this week
« Reply #7 on: July 06, 2018, 01:38:45 am »
I finished my fifth and final treatment May 2015. The 2016 entry was 44 weeks virus free.

I first treated with intron A (interferon Alpha) it was 3 shots a week for 6 months that was all there was then in 1995.

I treated again a couple of years later with the new improved interferon that was only one shot a week with a new drug ribavirin. This was also for 6 months. I had no response to treatment my viral load actually increased slightly on treatment.

I treated again with interferon, ribavirin and a clinical trial drug but still no use.

Shortly after that I was diagnosed with cirrhosis with no treatments available to me. That was 2008 

So when the new drugs were first approved in late 2013 I was super excited. I saw my doctor in the spring of 2014 and I was started on 12 weeks of Solvadi and Olysio. I was not detected at end of treatment (EOT) but 12 weeks later Sept 2014 when I retested I was found to have relapsed and my viral load was back up to pretreatment levels.

Harvoni was approved in late October 2014 and I was able to start treatment in Nov 2014. This time I treated for 24 weeks along with ribavirin. That was my last treatment which I finished in May 2015.

My liver enzyme tests have been in normal range ever since I started that last treatment and I have been free of the virus since then as well.

So yeah it was a long, long road but I am finally free if the hep c virus.

I am not entirely past it all though. I still have liver cirrhosis and I am still at risk of liver cancer because of it. Since I was cured of hep c my risk of my liver decompensating and needing a transplant are greatly reduced as well as my risk of liver cancer.

There is even the chance my cirrhosis might improve with time.

I guess I hang around to let folks know that even someone like me with multiple treatment failures and liver damage can survive treatment and be cured. So I hope that gives people hope and confidence to go forwards.

I know it is scary now but this will all soon be behind you in life’s rear view mirror
« Last Edit: July 06, 2018, 01:42:15 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 musicana

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Re: diagnosed this week
« Reply #8 on: July 06, 2018, 11:06:23 am »
OMG Lynn!!  You have been through it!  So glad it's behind you now and thank you for using your experience to help others.

I hear the liver is very resilient.  I'm sure you're taking good care of it now, with diet, etc.  May it continue healing.

Wishing you a terrific weekend,
~ ~ S.

Offline musicana

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Re: diagnosed this week
« Reply #9 on: July 06, 2018, 08:17:57 pm »
Hi Lynn ... if I may impose on your patience and generous spirit one more time ...

My appointment with gastro doc is in two weeks and during that time, while I chew my fingernails, I'm trying to educate myself as best I can.  I believe that an informed patient is a healthier patient.

So, I recently asked my family doctor for all the results of the blood tests they ran on Monday.  I've pasted below what she sent me.

I'm not looking for an item by item interpretation, however, I wonder if you could take a quick look-see at this list and see if anything stands out that I might benefit from knowing about.

I did get that I am negative for hep A and B.  And so I'll be getting vaccinated for those next week (something I had to initiate - that's what I mean about being an informed patient).  If anything else seems interesting or important I'd love to know.

If you don't have the time or interest, that's fine.  I'll know soon enough when I meet with the doc. 

Thanks for all the time you've given me so far,
~ ~ Susana

Component 7/2/2018
WBC 4.8
RBC'S 4.25
HGB 13.5
HCT 40.8
MCV 96
RDW, RBC 12.5
PLT 233
NRBC 0
NEUTROPHILS % AUTO 52
LYMPHS % AUTO 34
MONOS % AUTO 11
EOS % AUTO 2
BASO'S % AUTO 1
IMMAT GRANULO % AUTO 0
ANC 2.5
FE 101
TIBC UNSAT 200
TIBC 301
TRANSFERRIN % SATURATION 34
HCV RNA SER PCR QN 991,000 (H)
HCV RNA PCR QN 6.00
HCV RNA INTERPRETATION DETECTED (A)
ALKP 77
ALT 39
AST 34
TBILI 0.4
ALB 4.2
HBS VIRUS AB NEGATIVE
HBCAB NEGATIVE
HBSAG NEGATIVE
HEP A AB NEGATIVE

Offline Lynn K

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Re: diagnosed this week
« Reply #10 on: July 06, 2018, 08:32:24 pm »
The only ones I really tracked for myself were liver enzymes AST and ALT.

After I developed cirrhosis I now pay attention to my platelet count because it is well below normal at about 110. It was 80 to 90 before I treated so it has improved a little :)

Yours is well above min normal of 150 so that is a good sign.

Sometimes depending on which treatment a specific result would bear watching like HGB if you are taking ribavirin for some reason as riba can cause anemia in many patients while taking it.

Just look at ones not in normal range. If the range is not listed there might be an “H” or “L”

But don’t worry about normal results. Also, for those of us with hep c, slightly elevated liver enzymes are at least until you are cured basically your new normal for now. When people have something causing heavy liver damage you will have ALT and AST many times above normal range like over 500 to 1000 or higher.
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 musicana

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Re: diagnosed this week
« Reply #11 on: July 07, 2018, 02:55:51 am »
Thank you Lynn!  Very helpful.

I guess what I have to do now is try to relax and wait for the appointment with the doc.

I'm hoping that this waiting will be the hardest part!

Again, thank you for sharing your time and knowledge.




 


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