Welcome, Guest. Please login or register.
June 15, 2019, 06:52:53 pm

Login with username, password and session length


Members
Stats
  • Total Posts: 54160
  • Total Topics: 4565
  • Online Today: 68
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 1
Guests: 60
Total: 61

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Unwilling to get tested.  (Read 2697 times)

0 Members and 1 Guest are viewing this topic.

Offline Red_Baran

  • Member
  • Posts: 10
Unwilling to get tested.
« on: May 31, 2018, 10:12:25 am »
Sorry I don't really know where else to put this but here's the story.
I have a friend who was recently cured of HCV but his wife refuses to get checked even though she has RA and I have read that HCV can directly cause RA. I am told she doesn't want to get the test because she just doesn't want to know, no matter how curable it is now a days because of the stigma.

Does any one have any advise I could give my buddy on how he could convince her to get the test?

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,255
  • Get tested, get treated, get cured, fight Hep c!
Re: Unwilling to get tested.
« Reply #1 on: May 31, 2018, 02:58:50 pm »
Hep c is not easily transmitted within a household and as far as sexual relations between long term monogamous couples the CDC does not consider hep C to be a strong risk for sexual transmission. There have been many here where one partner has hep c while the other does not.

While there is an association between hep c and RA her situation is hardly a guarantee that it is related to your friends status. Many people have RA without having hep c.

I do agree that it would be prudent to get tested for peace of minds sake but I don’t personally think she is at much risk based on this only. If she had some other risk in the past maybe but not solely on her husband having hep c and her having RA.

I hope she can get the courage to have the test. I think the best person to have this discussion with her is her own doctor.  Her doctor can assess her risk and hopefully persuade her if they feel the test is needed. Especially if she is in the baby boom generation. We boomers are all recommended to be tested anyway.
« Last Edit: May 31, 2018, 03:01:31 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 Hogan1956

  • Member
  • Posts: 16
Re: Unwilling to get tested.
« Reply #2 on: July 15, 2018, 09:34:35 pm »
I can understand someone not wanting to get tested for hep c, i got tested July 2017 after seeing the 1 in 30 baby boomer commercial on TV recommending testing. To this day i wish i had never seen the commercial or just tuned it out. Ignorance is bliss for people like me.

I'm 62 and when i think back on how i might have been infected i realize i have probably have been walking around with hep c for close to a half century. An appendectomy in 1970, inoculations with air guns in boot camp in 1973 seem to be the 2 highest probabilities, i have some tatoo's but didn't get the 1st one until 1983 which is 4 years after hep c became widely known and sterilization of equipment became standard.
I have been on disability for nearly a decade with peripheral artery disease, social security is 100% of my income. I have medicare, but no drug insurance as i didn't opt in when i 1st got medicare and now the penalty for not carrying it all those years is so large it is out of the question to add it.
I saw a gastroenterologist starting in August 2017, he has done blood tests, a liver biopsy, a complete abdomen ultrasound, a colonoscopy (3rd one in 8 years) and wants to do a endoscopy. Room on the credit cards ran out in february after getting the colonoscopy results, it will be several years before i can even go back so i'm sure all the tests he did run they will want to run again before we even discuss treatment options.

I have been reading thru these forums and see that everyone seems to get a lot more information on test results than i have been able to garner. I know from the blood tests that my genotype is 1 and that my red blood count is low, from the liver biopsy he said scarring was in the 0-2 range, from the ultrasound i discovered that my spleen is slightly enlarged. It took 6 months to find out that my viral load when tested was 8 million 2 hundred thousand.

As i explained to this doctor that the money was gone, i sensed him sizing me up, like he was deciding whether or not i was even worthy of him spending time on me. So to the original poster i can say your friends wife is right, there is a stigma attached to having hep c.

I quit drinking, try to eat healthier and get plenty of exercise. I am hopeful that someday i will treat this disease, but in the back of my mind i know it will never happen.

Ignorance is bliss....too late for that comfort in my world.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,255
  • Get tested, get treated, get cured, fight Hep c!
Re: Unwilling to get tested.
« Reply #3 on: July 16, 2018, 12:46:12 am »
Hi Hogan and welcome

So sorry to read about all the stress this has caused you both emotional and financial.

I am far from up to speed on disability but are you on Medicare Medicaid or any other insurance? Were all the costs related to the amount youhave to pay as a copay under any insurance you may have? If you don’t have insurance can you qualify for help under one of those programs?

Not sure about a fibrosis score of F1 or F2 being enough to cause spleen enlargement. That is mostly seen in F4 cirrhosis with portal hypertension. Another common early symptom of cirrhosis is a low platelet count. This is caused again by portal hypertension which caused spleen enlargement which in turn causes the spleen to start retaining platelets.

If you don’t have cirrhosis I’m not understanding why they would want to perform an upper endoscopy.

I also received air gun injections in basic in 1976 and also later on. I did get a tattoo in a GI bar in Germany. The tattoo guy lived over the bar and we got our tattoos in his kitchen inhis little studio apartment.

Anyway I hope you can ge some kind of insurance to help you with these costs maybe the doctors office social worker would have suggestions.

If you do have cirrhosis it is really important for you to receive proper care if there is any way possible.

Sending my best wishes and hopefully someone with more info and knowledge than me about obtaining insurance coverage can help.
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 strangerbynight

  • Member
  • Posts: 113
Re: Unwilling to get tested.
« Reply #4 on: July 16, 2018, 04:35:51 am »
I can understand someone not wanting to get tested for hep c, i got tested July 2017 after seeing the 1 in 30 baby boomer commercial on TV recommending testing. To this day i wish i had never seen the commercial or just tuned it out. Ignorance is bliss for people like me.

I'm 62 and when i think back on how i might have been infected i realize i have probably have been walking around with hep c for close to a half century. An appendectomy in 1970, inoculations with air guns in boot camp in 1973 seem to be the 2 highest probabilities, i have some tatoo's but didn't get the 1st one until 1983 which is 4 years after hep c became widely known and sterilization of equipment became standard.
I have been on disability for nearly a decade with peripheral artery disease, social security is 100% of my income. I have medicare, but no drug insurance as i didn't opt in when i 1st got medicare and now the penalty for not carrying it all those years is so large it is out of the question to add it.
I saw a gastroenterologist starting in August 2017, he has done blood tests, a liver biopsy, a complete abdomen ultrasound, a colonoscopy (3rd one in 8 years) and wants to do a endoscopy. Room on the credit cards ran out in february after getting the colonoscopy results, it will be several years before i can even go back so i'm sure all the tests he did run they will want to run again before we even discuss treatment options.

I have been reading thru these forums and see that everyone seems to get a lot more information on test results than i have been able to garner. I know from the blood tests that my genotype is 1 and that my red blood count is low, from the liver biopsy he said scarring was in the 0-2 range, from the ultrasound i discovered that my spleen is slightly enlarged. It took 6 months to find out that my viral load when tested was 8 million 2 hundred thousand.

As i explained to this doctor that the money was gone, i sensed him sizing me up, like he was deciding whether or not i was even worthy of him spending time on me. So to the original poster i can say your friends wife is right, there is a stigma attached to having hep c.

I quit drinking, try to eat healthier and get plenty of exercise. I am hopeful that someday i will treat this disease, but in the back of my mind i know it will never happen.

Ignorance is bliss....too late for that comfort in my world.

Dont give up hope, i have cured mine with generics harvoni for only $1000, just find out your genotype, viraload, go and order generics and you will be cure in no time..

Offline Hogan1956

  • Member
  • Posts: 16
Re: Unwilling to get tested.
« Reply #5 on: July 17, 2018, 10:14:43 pm »
Thanks for the welcome and teaching me that the medical field denotes cirrhosis as F numbers Lynn K. When and if i get a look at the liver biopsy report i will know what to look for.
I would have thought that going on disability @ 53 i would have been placed on Medicaid, but i guess they figured that since PAD is permanent it would be cheaper for the state to put me on medicare making any drug programs my expense.
I have original medicare parts A and B only.

Medical expenses are only a fraction of the debt i have amassed. I would file bankruptcy in a heartbeat if the debt was all medical. I have a near 90 year old mother who i've had to help in recent years, and as long as she is walking the earth i choose to keep paying my debt.
I feel no stress from hep c, i dodged a bullet 9 years ago and realize every day i survive from that point on is a blessing. If i'm still kicking in 2024 i may be able to address it.

strangerbynight
I am pleased you were able to get drugs in thru India (i'm guessing) without customs confiscating them, and were able to get cured. With my luck customs would catch the package and i would just be out the grand. The US patent runs out in 2030.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,255
  • Get tested, get treated, get cured, fight Hep c!
Re: Unwilling to get tested.
« Reply #6 on: July 18, 2018, 12:59:23 am »
There were several people who were able to get meds that way without any problems.

I think the web site was fix hep c but I didn’t go that route. I think I remember them talking about a Dr Jeffries

I am sure strangerbynight has more information about that and several others if they are still around.

Don’t give up just yet
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 strangerbynight

  • Member
  • Posts: 113
Re: Unwilling to get tested.
« Reply #7 on: July 18, 2018, 05:00:43 am »
strangerbynight
I am pleased you were able to get drugs in thru India (i'm guessing) without customs confiscating them, and were able to get cured. With my luck customs would catch the package and i would just be out the grand. The US patent runs out in 2030.
[/quote]

Actually its much easier to get the meds if you are from U.S, i belive in the U.S you are allow to import a 90 days meds supply although i could be wrong, i live in Canada. yes i got mine from india but through Greg Jeffery's who lives in Australia, you can join his facebook group and he can help you, he labels mine meds as a vitamins supplement and it went through custom,  you should give it a try like that, wish you and your mother all the best.
« Last Edit: July 18, 2018, 05:06:45 am by strangerbynight »

Offline Hogan1956

  • Member
  • Posts: 16
Re: Unwilling to get tested.
« Reply #8 on: July 18, 2018, 03:20:58 pm »
Thank y'all for the replies...i will look into it.

Offline Hogan1956

  • Member
  • Posts: 16
Re: Unwilling to get tested.
« Reply #9 on: July 24, 2018, 12:26:55 am »
After hours and hours of research, acquiring records, and deciphering records a line from a Don Henley song rings in my head. "The more i know, the less i understand."

Greg Jefferys site is very informative and his way of getting Harvoni looks very promising. Getting the medical treatment here while on it don't look as promising. My mind keeps returning to bootcamp and the jetguns. I found this on hcvets.com

April 13, 2000, Gary A. Roselle, M. D., Program Director for Infectious Diseases, Veterans Health Administration, Department of Veterans Affairs, state, "One in 10 US Veterans are infected with HCV", a rate 5 times greater than the 1.8% infection rate of the general population."
Of the total number of persons who were hepatitis C antibody positive, and reported an era of service, 62.7% were noted to be from the Vietnam.
A number of veterans as well as doctors now believe that Vietnam veterans...could have contracted hepatitis C through unsafe jet gun vaccinations.
Dr. Thomas J. Berger, of the Maryland-based nonprofit group Vietnam Veterans of America, said that given the unsterilized way the vaccinations were done, there is no doubt the VA should label jet gun vaccinations as a risk factor for the disease.
“It’s about money, just like it was for years with Agent Orange,” said Berger, who said the official estimate of 1 in 10 Vietnam veterans having hepatitis C might be low. “There’d be more claims filed for disability with jet guns as a risk factor.”

I swore over 40 years ago that i would never use a VA doctor for any kind of medical treatment(zero faith), but today i put in a application for medical benefits to try to get them to cover the costs to treat my hep c. Or at least monitor blood results during and after treatment. It will take a week or two to find out, but, i believe after viewing the test results from last year i have time to spare.
All liver enzymes were in the normal range, the fibrospectII result was a 7 indicating a 89.9% chance of F0-F2 and the low RBC was very close to normal @ 4.40

I guess its sit back and wait for now....I think i will go listen to that old Don Henley song  which is "the heart of the matter".

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,255
  • Get tested, get treated, get cured, fight Hep c!
Re: Unwilling to get tested.
« Reply #10 on: July 24, 2018, 12:36:42 am »
Glad to hear you are making progress and have not given up.

I am also a veteran 8 years service. I left for basic in August 1976. I experienced many air gun injections but I attribute my hep c more likely from my own actions than the air gun injections.

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 Hogan1956

  • Member
  • Posts: 16
Re: Unwilling to get tested.
« Reply #11 on: July 24, 2018, 12:47:08 pm »

I am also a veteran 8 years service. I left for basic in August 1976. I experienced many air gun injections but I attribute my hep c more likely from my own actions than the air gun injections.

Best of luck

Let me say thank you for your service, you evidently were a much better soldier than me. After a year or so i had decided that there wasn't enough money in the world for me to reenlist.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,255
  • Get tested, get treated, get cured, fight Hep c!
Re: Unwilling to get tested.
« Reply #12 on: July 24, 2018, 04:54:55 pm »
Nah lol

I got out after four then came back 3.5 years later and did another four.

Thanks for your service also ;)
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!

 


© 2019 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.