Things Not To Say to Someone Who Just Completed Hepatitis C Treatment

Now What?

Now What?

  • You were in treatment?  I just thought you were aging badly.
  • Now make sure you don’t get it again (my personal favorite)
  • How do you celebrate without alcohol?
  • How can you be sure you are cured? I’ve heard it comes back.
  • I heard of a guy that went two years then his liver blew up.
  • Some guy finished treatment then killed himself.
  • Can you talk to my husband?  He won’t quit drinking and drugging.
  • I saw a website that says St John’s Wort works better.
  • Want to volunteer at the hospice?
  • Too bad you have to give up your handicap placard.
  • Glad you finished.  Maybe you won’t be such a moody A Hole now.
  • You should have waited for newer treatments.  They are better.
  • Now, shut up about your symptoms.
  • Good, now get off your butt and do something.
  • Now what?

And Now For Something Completely Predictable: Law Suits with Hepatitis C Treatments

Hepatitis C Research:  This  trend to law suits was completely predictable, but right?  I think not.  In the words of a friend of mine “Fuck me, what do I know?”

Artwork:  Lapland Hand

I don’t know the answers, so I raise my hand to ask

Hepatitis C patients want to sue drug companies post  research treatment, claiming permanent emotional and mental damage. How do they know which came first? 

  Here is one site I found while looking into the topic, www.lloydwright.org    At the end you will note an absence of comment from me. I don’t know why I am lacking compassion. Am I a patient?  Am I a scientist?   

http://lloydwright.org/messages/content/i-was-better-hepatitis-c  I was better off with the Hepatitis C!

Name:

Mariel

Your Question for Lloyd

I was wondering how I get involved in the class action against interferon. While taking the drug, I dropped down to 79 lbs, and now have Gastroparesis and Crohns disease as a result.

The interferon paralyzed my stomach, and I am considering having a pacemaker put in because I am constantly vomitting and nausea us, and dropping dramatic weight. I am on disability because of this, and its caused me immense mental distress, as well as my daughters.

Please tell me what I need to do to get involved. I can not work and there for am unable to provide the life I wanted. I was better off with the hepatitis C! 🙂

I have just finished taking Interferon and Ribavirin for Hep C

I have just finished taking Interferon and Ribavirin for Hep C. I took it for 6 months and was cured of HEP C; however, no my liver and kidneys are suffering. Two months ago I had a perfect liver besides some fat. Now, I have Cirrhosis spots and the dr. said it has acquired 2 YEARS of damage in 30 days.
I was wondering if there was any lawsuit I could join or any other programs? I now am facing cancer most likely and have 4 children and nothing to leave behind to help them.
Thanks you. -Jim Thomas

Long Term Sides that ruined my life after hep c treatment

i WANT TO SUE FOR PAIN AND SUFFERING!!!!!

Can you help direct me?  “They never told me that I would be disabled permenantly when I treated in 2006,  My nervous system is a mess.  I have severe panic attacks, depression, eyesight is really bad, still ache all over, agoraphobia.   This has brought me down from being a productive & employed ‘to being below poverty level (cause I’m unstable i cannot hold a job for long) and I have been on the brinks of homelessness for the passed months;  I’ve been suffering since 2006.

This treatment ruined my life!

Sent: Thursday, November 10, 2011 3:55 PM To: LloydWright Subject: [Contact Lloyd] Severe disability resulting from Interferon + Ribavirin treatment in 2003. I was never warned and I’m seeking legal advice and/or recourse
_Smith sent a message using the contact form at  http://lloydwright.org/messages/contact.
post Interferon nightmare

In September 2008 I started Peg Interferon. I stopped after 6 months. Here is my story:
My name is Nick I am a now 30 year old father of an almost three year old little girl named _____. ( D.O.B.: ) and husband of a 32 year old wife named _____  (D.O.B.: ) I was 27 going on 28 years old when I found out I got the Hep. C Virus. About 6 months to a year before that I was giving plasma every 6 months until finally the next time I went in to give it I found out that recently I caught the Hep. C virus.

phase II clinical trial SOC and Boceprevir – Join the Suit

Lloyd Wright, An email friend referred your site. I am currently in a federal law suit for permanent injury sustained from my participation in a clinical trial of PegIntron / Rebetol / Boceprevir. I suffer multi-system sarcoidosis with occular, renal and pulmonary involvement caused by PegIntron and Rebetol treatment.

Lee Prokaska The Hamilton Spectator Canada (Jun 3, 2010)

It is virtually impossible to put an accurate and true dollar value on a loved one lost.

But when a mechanism is set up to try to do that, when responsibility is accepted by government, it is unacceptable for families to lose yet again by failing to receive the full compensation they deserve.

Group to sue over hepatitis C

People with hepatitis C have formed a group to sue the government and drugmakers for damages over their infection during mass vaccinations even though they have no clear evidence, such as medical charts.

  www.heplikeme.com

Hepatitis C: Been A Long Time Leaving But’ll Be A Long Time Gone

My dad was a Waylon Jennings man.  I think he liked the big FU that Waylon projected.  I paraphrase Waylon.  “I been a long time leaving Hepatitis C, but I’ll be a long time gone”

So after three years of treatment-plus the maybe five years of falling apart, I get a voice mail that says “Hi Deb, this is the message you’ve been waiting for.  Still no detectable virus, so you’re cured.  See you in 24 weeks”.  Glad I go back in 24 weeks, so I can ween myself off of the Texas Medical Center.  This follow-up lasts a couple of years.  Now what?  I don’t care.  Today I am neither a patient nor a scientist.

Yep, I’m doing this in Kerala

I can do anything I want.  I will start with a trip to India this week. No shit.  BTW I tried to say this without the word shit, but it didn’t sound like me.  Waylon and India.  That’s all I got to say for now.

http://www.biography.com/people/waylon-jennings-9354063

www.natmystic.com

Hepatitis C Treatment Management: What would Mamaw Do? WWMD?

Mamaw and Papaw’s Wedding Day 1916 Livingston KY

The world of Hepatitis C treatment  is more than taking drugs as scheduled and hoping for virus death.  The bigger part is keeping  your body, mind and soul with you.

  • Diarrhea?  Water and Lomotil I guess, that was never my problem
  • Nausea?  Water, saltines and Phenergan
  • Constipation?  Water and stool softener.  Even the name is too gross.  Kinda like mud-butt
  • Mouth Sores?  Water then swish and spit Mylanta.  Happy to spit
  • Food taste like pennies? Water and floss, floss, floss, brush, brush, brush.  Still doesn’t help
  • Flu symptoms for six months?  Water then alternate Tylenol and Advil for six months.  Exercise: yeah, right
  • Rash? Benadryl oral and topical.  Maybe hydrocortisone/vaseline
  • Insomnia?  Ambien if you are lucky.  Benadryl if you are unlucky, it adds to constipation and taste of pennies.  Don’t drink water before bed
  • Depression? Water and SSRIs/SNRIs/antipsychotics/and on-and-on in couplets
  • Too tired to work?   Adderall if  the shaking won’t vibrate your loose screws
  • Can’t go on?  Cry really hard, take Advil, drink water and go on.

My Mamaw had eleven children in Eastern Kentucky  starting in 1917.  There was no doctor, drug store or money.  She lost two baby boys, one to the Spanish Flu.  When she came out of delirium, baby Bentley was already buried.

If an artery spurted, she applied coal soot.  Got a burn?  First well water (cold) then let egg white dry on burn or apply a slice of onion.  Step on a nail?  Clean and soak with turpentine.   Pneumonia?  Inhale kerosene (dosing was tough) through a moist cloth and put a mustard plaster on your chest.  It will kill you or cure you.  I never witnessed this  one.  Croup?  Make a sheet tent over the steam kettle, put in Vick’s and then hold the child under the tent.  If that treatment doesn’t work, sugar with a drop of kerosene. Give a few drops of whiskey if you got it.

a dose of pee

Here’s what applied to us grandkids. Pinworms?  Check rectum at night with a flashlight then give all the kids a stinky medicine that I think had tobacco in it.   Earache?  Warm up pee in a teaspoon a little more than body temp  and pour it in your ear. Stick in a plug of quilting. I would hide in the cedar closet  as long as I could before telling Mamaw.  I made her use my pee.  Here is the thing: it worked. Pee is sterile upon leaving the urinary tract.  Of course I knew nothing of a “clean catch”.  Collection was easier when we got an indoor bathroom.  You figure it out.  When I checked the internet for possible mechanisms of action (MOA) of the pee, there was a claim that urine is an antifungal.  Of course on the internet you can probably find a claim that golf balls extract is good for an earache too.  I made that up.

Mamaw’s rocker and sock monkey

What would Mamaw do about Hepatitis C treatment management?  Probably just rock me and say “Doggone it.  It’ll get better.”    I have her rocker in my house.  It sure is smaller than I remember.  Anyway,  it doesn’t really work without her.

Hepatitis C: Is that a Real Poncho or is that a Sears Poncho?

Mothers of invention, Theatre de Clichy, Paris...

Mothers of invention, Theatre de Clichy, Paris, 1970-1972 (Photo credit: Wikipedia)

“Look here brother,
Who you jivin’ with that Cosmik Debris?
Now is that a  real poncho or is that a Sears poncho?  Hmmm, no foolin’?”

Frank Zappa and the Mothers of Invention

Do you have a liver doctor (hepatologist) or a gastroenterologist?  Many people start out with a liver doc then over to a local gastro for long-term treatment management.  Kinda like selling your mortgage to a broker that does home mortgaging on the side but commercial financing is his bag.  I know, lame example.

Now a gastroenterologist is trained on the liver but probably hasn’t thought much about it since his fellowship at school.  Why?  Because his specialty is the GI tract (esophagus to anus).  In fact many gastroenterologists spend so much time with endoscopy or colonoscopy, they are refered to as “Scope Monkeys”.   The liver is not part of the GI tube.  No foolin’

Follow the GI tract from esophagus to anus. Then look at the liver.

Members of the two GI national associations, the American Society of Gastroenterology and Endoscopy (ASGE) plus the American College of Gastroenterology (ACG), do not attend meetings with the American  Association of the Study of Liver Disease (AASLD) and visa versa, unless presenting new research data.  But they don’t attend each other’s lectures. I know. For decades I attended the joint meetings of ASGE and ACG. It is difficult for a gastroenterologist to stay current on evolving treatments for Hepatitis C.  And these days the treatment (r)evolution is on.

Two weeks ago the AASLD and the EASL (European Association of the Study of the Liver) met in Prague to discuss Hepatitis C and:

  • Global scale intervention and control of HCV – OK
  • Prospects for a preventive HCV vaccine – OK
  • Review of new drug treatments in development such as Nonnucleoside inhibitors of HCV RNA polymerase, NS5A inhibitors, and Cyclophylin inhibitors – Important to you
  • Effectiveness of triple combinations in cirrhotics Important to a lot of you

Why do I mention this?  Here is an example of why.  Treatment of Hepatitis C is complicated and lasts a long time. The ribavirin induced anemia is treated by dose reductions based on your weight.  If your red blood cells (RBCs) drop below 10 mg/dl, Ribavirin is reduced by 20%.  If the RBC number does not increase in a few weeks, dosing must decrease another 20%.  But the dose cannot drop below 600 mg.  Now adding the protease inhibitors telaprevir and boceprevir,who knows what happens to RBCs in you?  Does the gastroenterologist know that?  Doubtful.  Does he know about the new drugs that work at different sites on the virus?  No.

Your insurance co-pay is probably the same regardless of which specialist  you visit.  Why not go with the real poncho?  BTW I couldn’t find a real poncho, only a Sears type poncho.  No foolin’

References

http://www.songmeanings.net/songs/view/78854/#mjbJdWKO6aRwIzk0.99

http://www2.kenes.com/PRAGUE2012/SCIENTIFIC/Pages/ScientificProgramme.aspx

http://www.natap.org/2012/APASL/APASL_08.htm

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_anemia.pdf

Hepatitis C: Beware the Jabberwok

 Hepatitis C:  Beware the Jabberwok

Through the Looking Glass

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

‘Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!’

He took his vorpal sword in hand:
Long time the manxome foe he sought 
So rested he by the Tumtum tree,
And stood a while in thought.

And, as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One two! One two! And through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

‘And hast thou slain the Jabberwock?
Come to my arms, my beamish boy!
Oh frabjous day! Callooh! Callay!’
He chortled in his joy.

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.    

  

If you listen to a scientific lecture for an hour, you can begin to believe nonsense is science, but don’t.

I believe that the average Hep C patient (whoever that is) has a triple cross to bear.     1. You feel like shit on a stick  2. You have to go to unimaginable places like a liver biopsy suite and 3.You are thrown into a parallel universe where the language is almost understandable, but not really. It’s Jabberwok.

I was listening to a lecture yesterday on Hepatitis A through E. I was reading the slides as Dr. Nice Lady from pharmacy was talking.  And then I heard it:Hepatitis B and C are predominately associated with percutaneous and permucosal transmission”.  Translation:  Hep B and C can be caught through blood and through sexual contact.  Permucosal  is medical lingo for via mucous membranes.  The problem was that fifty pharmacists were about to  leave the lecture and tell their worlds that you can catch Hep C through sex.  I couldn’t let that happen so I said through the chat box “Hep C can be caught through sexual contact?  Is this new information?”  She said no, you are right to point that out, it is not transmitted that way.  So why did she say it?  The slide looked better that way.

In reality, the way one gets Hep C through sex is through rough sex and I mean rough.  Percutaneous means blood transmission.  I will pause here so that you create your own image.

Now I was willing to let it slide when she said that Hepatitis A and E were transmitted through the oral-fecal route.  In reality it is fecal-oral route.  Think about that for a moment.  But my point is that there is a lot of slightly non-true information out there.  What can you do about it?  Ask questions wherever you go.  Even if you have asked the same question before.  Remember how your doctor’s office always has that sign in English and Spanish that says Questions/Pregunta?  They really want you to ask.

Boy, did spellcheck light up Jabberwok!

http://en.wikipedia.org/wiki/Jabberwocky

Lewis Carroll Through the Looking Glass

Viral Hepatitis:  Keeping Your Patients Safe www.freece.com