For You New Guys: Now What?

I wrote this article for www.hepatitiscnews.com.  Visit their site for more information.

You have hepatitis C (HCV) and have only heard scary things. Your best friend is knowledge, not just facts. It is no good to just bring your liver to treatment. You must bring your mind as well.

Quit drinking or taking drugs? If not, come back when you do.

What to learn:

Doctors: Your insurance will pay the same amount for a hepatologist or a gastroenterologist. Go for a hepatologist. All he thinks about is the liver.

Treatment Lingo: Learn it. This language is the only way you have to talk with your treatment team.

  • VR: Viral load – number of viruses per ml of blood is written      in logs
  • Log: simply a way to not write all the zeros in a number. 1,000,000 is 1 million viruses per ml of blood, is 6 logs
  • RVR: Rapid Virologic Response – hep C undetectable at week 4 of  treatment
  • NR: Null Response – no decrease in virus at week 12 of treatment
  • PR: Partial Response – small decline in virus at week 12 but still detectable at week 24
  • SVR: Sustained Virologic Response – undetectable virus 6 months after treatment completed. The goal!
  • Genotype: Most people in the US are Genotype I. Learn yours. Treatment choices are based on genotype

Depression: If you are like me and inclined toward depression, ask your doctor if you can start antidepressants before treatment. It’s easier to get ahead of depression than try to catch up to it. This can make the difference between completing treatment and not.

Available Treatments: Currently the standard of care (SOC) includes Interferon, which is harsh. Soon treatments will be available without Interferon. Can you wait? Talk to your doctor. All treatments include at least 2 drugs to attack the virus at two different sites in the life cycle (think of killing fleas on your pet).

flea life cycle

Another approach: I am a scientist as well as a treatment success. Here is what I did and why: I looked up clinical trials in my city at clinicaltrials.gov. I found a research site and participated in trials there.

The advantage: Newest treatments and a team focused on my health with close monitoring of my whole body, not just my liver. All treatment is free and you can opt out if you don’t feel comfortable.

The disadvantage: You must commit to follow the protocol. My first treatment drugs were SOC and didn’t work so I went through treatment again. But, this was successful and I am cured!

One note of warning: They are researchers and so they don’t know all the answers to treatment outcomes. Phase III means that many patients have experienced this drug and more is known about safety. Phase II means the drug has only been in a few humans, so less is known about safety. I suggest only participating in a Phase III trial if you aren’t comfortable with the unknown.

I wish you the best and suggest taking it one day at a time.

on the farm

on the farm

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: 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

Hepatitis C Now Godzillaprevir and KingKongViracide: Yes but is Interferon Still in the Mix?

GodzillaPrevir

KingkongViracide

No matter how powerful add-on drugs are, if Interferon is still part of the mix, many patients will not be able to finish the treatment.  If I was in early stages of Hepatitis C with minimal liver scarring, I would wait 12-24 months for new treatments sans Interferon.  If my Hepatitis C were more advanced, I would go to www.clinicaltrials.gov and type in my disease and city. (Note disclaimer at end of blog)

Below are “press releases” from companies and are mostly targeted to investors, e.g. The market for treating hepatitis C has burgeoned  (My spellchecker doesn’t recognize this as a word) in the last year.

Always look at the source of medical information, if it is Kiss Your Assets Good-Bye or Liver Heard on the Street, run away. If it is the New England Journal of Medicine, or Gastroenterology proceed with caution and a jaundiced eye.  Oops a hepatitis pun.

Dec 1, 2011 – Novel Hep C Treatment Excludes Peginterferon Alfa By: DENISE NAPOLI, Internal Medicine News Digital Network Therapy with a novel

But then if I didn’t read the business news, I wouldn’t know about this for another couple of days:

Bristol-Myers Drops Hepatitis C Drug After Patient Death

Daniel Acker/Bloomberg

Bristol-Myers Squibb Co. has abandoned an experimental hepatitis C pill it bought for $2.5 billion earlier this year after one patient died and others were hospitalized while taking the drug in a study.

                    

Bristol-Myers will take a charge of $1.8 billion in the third quarter related to research and development of the therapy, the New York-based company said in a regulatory filing today. The drugmaker suspended testing the medicine, known as BMS-986094, on Aug. 1 after a patient developed heart failure.

Bristol-Myers said yesterday it has discontinued development of the drug, part of a class of medicines called nucleotide polymerase inhibitors, and was consulting with U.S. regulators to assess the treatment’s effects. Along with the death, eight patients suffered from heart and kidney toxicity, the company said in a statement.

“Bristol-Myers paid a fortune for a pearl that turns out to be fake,” said Erik Gordon, a University of Michigan businessprofessor who follows the health industry, in an e-mail today, referring to the company’s “string of pearls” name for its acquisition strategy. “The Inhibitex acquisition shows the dangers of paying huge premiums for late-stage drug candidates in hot areas. They still can fail.”

I love it:  The dangers of paying huge premiums…Not the dangers of participating in clinical trials. No disrespect to business people, just a different perspective.  I should know, I worked in Big Pharma for twenty-five years.  First make money for share holders, then do no harm to patients.

dictionary.reference.com/browse/inherent existing in someone or something as a permanent and inseparable element, quality, or attribute:

There is inherent risk for patients in clinical trials.  You can quote me on that.

The Hepatitis C Screen Door Swings Two Ways

My father-in-law wanted Viagra.  He wouldn’t shut up about it.  My mother-in-law finally said “Then what?  You’re not getting on me”  eewww, the visual for me….

So we screen for Hepatitis C, then what?

Attention Baby Boomers: The Centers For Disease Control (CDC), the group that tracks bird and swine flu, is thinking about screening you for Hepatitis C.

Hepatitis C is particularly dangerous because it is a silent killer. It can live for decades in a person’s body, slowly destroying the liver, while causing few symptoms,” said Dr. John Ward, director of the CDC’s division of viral hepatitis.

The new guidelines are expected to identify more than 800,000 infections, prevent 100,000 cases of cirrhosis, prevent more than 50,000 cases of liver cancer, and save more than 120,000 lives. Hepatitis C is the leading cause of liver transplants in the United States.

The relatively inexpensive blood test is “a small investment now for a big benefit later,” Ward said.

The CDC believes routine blood tests will address the largely preventable consequences of the disease, especially in light of newly available therapies that can cure around 75 percent of infections.

The field has attracted broad interest with two new hepatitis C drugs, Incivek from Vertex Pharmaceuticals Inc and Merck & Co’s Victrelis, reaching the U.S. market in the past year.

Sorry about the blur, link at bottom if you are interested

Should we screen for Hepatitis C in patients over 50?  There is no vaccine, the standard treatment of Interferon/Ribavirin is about  $60,000 and the eradication rate about 40-50% in the most common genotype (1).  Adding  Boceprevir (Victrelis) is $1,000 a week (x 24 weeks = $24,000). Telaprevir (Incivik) is $4,100 per week (x 24 weeks = $98,000).  So treatment =  $80,000 to $158,000.  They must be really proud of Telaprevir.  At that price they may have to keep it.  All of this assumes 24 week treatment but it is common practice for those on Interferon/Ribavirin to go 48 weeks ($120,000 for dual therapy)

 

These are all rounded numbers and this does not include anything but the drug.  Side effects are horrible.  A few are nausea/vomiting/diarrhea/depression/suicidal and homicidal thoughts/hair loss/anemia/insomnia . The new drugs add full body rash, rectal itching and/or rectal bleeding.  (This reminds me of the old treatments for syphilis: mercury and arsenic).   Many patients cannot hang and drop out. Jobs are lost, families strained and the patients overwhelmed. And then there is that pesky liver transplant for those beyond pharmacologic help (drugs).

But there are currently over 4 million people infected in the US and the largest group are over 50 with long-term damage.  And there are new tests and treatments.  For instance, researchers recently identified a specific DNA sequence in the gene that codes an immune response regulator, called IL28b. Different IL28b sequences predict whether treatment will successfully clear the virus.

With that in mind Goldhaber-Fiebert and Liu of Stanford created a computer model looking for the line at where it makes sense to go through treatment.  Remember that these people think in terms of how many patients out of 1,00 people, not what YOU should do.

After intense statistical and simulation analysis, the model showed that the new triple therapies were indeed cost-effective for chronic hepatitis C patients with advanced liver disease. Despite the large price tag and side effects, the new treatments help these patients avoid costly cancers and liver transplants — as well as allowing them to live longer, higher-quality lives.

For those patients with mild disease, the model indicated that determining their IL-28B genotype is the best next step, before prescribing a treatment.  The closer the threat of severe disease, the more justified treatment costs and risks become, said Goldhaber-Fiebert. “That would be the bottom line.”

Though these new drugs may offer relatively desirable options now, both Goldhaber-Fiebert and Liu noted that additional, and perhaps more effective, drugs are already in clinical trials.”

So in the “State-The-Obvious” department  they conclude: “As more and better treatments become available, the decision will continue to evolve, requiring further analysis, patients and health systems could also benefit from price competition with multiple treatment options available. But ultimately, treatment decisions will remain a private conversation between a doctor and a patient. “

A bit chicken shit but common in the academic world.  All studies end in “Further research is needed”.  Which is academic speak for “See you at the next medical conference where I will have more data”.  Note the reference to “health systems”.  This includes the insurance company.

Now, as a taxpayer, I wonder where the money is coming from. You can see one reason a clinical trial is an attractive option.  I didn’t pay a nickel.  In fact they paid my gas and parking.  BTW my results from 12 week post treatment just came back “No detectable virus”.  So why do I have a trace of cynicism about drug companies pushing for testing?

My mom used to yell, “close the screen door, you are letting the flies out”.  I always thought that was funny. Regarding screening and insurance that may be true but not so funny.

http://www.nlm.nih.gov/medlineplus/news/fullstory_125350.html

http://health.yahoo.net/news/s/nm/all-baby-boomers-should-get-tested-for-hepatitis-c-cdc

http://med.stanford.edu/ism/2012/february/hepatitis.html

In The Waiting Room With The Losers: They Don’t Look Like Losers, Do We?

Tuesday Girl

When in a clinical trial for hepatitis C, there is no place to hide in the waiting room.  We are all there with our livers and our coolers full of injectable poisons.  You can tell what trial each person is in by the cooler they carry.  And watching the progress of a person, you can evaluate the side effect profile of the drugs.  Sort of. Do they bother combing hair? Coloring lips? Putting on lace up shoes?   Is that insider trading?  No, studies are blinded.  But we are not.  Clinicians would learn a lot observing us before we go on stage with the white coats.

I’m a Tuesday girl, I come on Tuesdays.  I recognize the Tuesday people.

You can clearly see the transplant candidates.  They look like Cecil without a smile.  A  yellow-green snot color with a gaunt face and an ascitic belly.  The post transplants look less yellow but more waxy, and kinda more dead.   High doses of steroids and immunosuppressives  will do that.  I look around thinking “These are not my people”  but they are.  If I look beyond the medical realities, they show up in a shirt and tie, uniform, sweat suit. But they don’t look like, I don’t know, losers.

I want so badly to change the TV to CNBC or CNN. But I am too short to change channels and everyone is staring at Good Day Houston.  I want to scream.  I breathe in and try to focus on questions I have and remember to request a copy of my lab work.  Don’t forget, don’t forget, don’t forget (Brain Fog).

I am sitting where I can’t see the TV, and listening to a book on my phone.  But then I watch everyone watch Good Day Houston and try to guess their faces.  Ugh, the only thing worse than a national daytime talk show is a local daytime talk show.  I remember Girl Talk with Virginia Graham out of Cincinnati when I was a kid home ill. I’ d never seen anyone so made up in my life.  And at 9 AM.  She had her hair combed into cotton candy, and four shades of lip color.  I don’t know about her feet.  She motioned for guests to join her at the coffee table.  Her jewelry jingled but her hair never moved. .  She was not my people.

Virginia Graham (the early 60s) way before The View…
Woah!  I Googled Girl Talk and got something completely different.

The Butcher Knife Solution

When I went through treatment #1 for Hepatitis C, I discovered that there is crazy in me, lots of crazy.  I get overwhelmed when I am overwhelmed.  Nature/nurture who gives a shit? I have, in my life, gone through self-help jibber jabber, 12 steps, journaling (which I hate-hate), therapy,week-end retreats, working with women in jail that want to stay sober once released without becoming a Baptist,  blah blah blah. I dealt with the demons of my childhood. I put all that little kid stuff in storage somewhere. Interferon drug out the box.

I read a book review that says most horrible childhood memories  published today are fabricated for greed.  The critic says the odds are against finding a person who has an intense childhood memory, wants to share it and is a good writer.  Misery Lit, what a category.  Where is Oprah when a bad critic should be exposed?  BTW, I never watched Oprah.  Too folksy. Makes me think of me.  Does my folksy bug others? Does it seem insincere? See, we all think about ourselves.

When I was a kid, my dad regularly came home drunk after bedtime, wanting money and the car keys.  Nobody slept until he got them or he passed out.  If it got really bad (poorly defined), Mom would grab up my little brother in the bed sheet and tell me to get her pocketbook and run to the car. Winter or summer. Scared me to death.   We got in, Mom started the car while I locked the doors.  Dad came flying after us “You’re not going anywhere”. I was shaking, maybe crying.  He yanked up the hood and pulled out the distributer cap.  Over and over we had no choice but to return to hell. One dawn found me with a butcher knife standing over his passed out body.   I was the grown up on duty (GOD).  It was my job to come up with solutions.  At least my mom and brother could get some peace. I said to myself “Just do it.  It’s okay if you have to go to prison.”   I couldn’t do it.  Mom was asleep on his shoulder. We didn’t talk about it later. We never did. Dad sang Hank Williams “Hey good lookin’, what you got cookin’?”  while Mom cooked breakfast, like the night before didn’t happen.

My good grades started to slip.  My teacher, Mr Kitchen,  asked if there were any problems at home.  My skin blistered red and I muttered no, everything is fine.  I still remember the moment.  I stared at my white gym shoes with broken strings. I was so ashamed.  He could tell my secret. (Therapy says it isn’t my shame.  Damn Interferon says yes it is).  I couldn’t look him in the eye ever again.  After that I got pulled out of class to see a visiting somebody. I went way up the winding steps to the nurse’s office.  The stone stairs had metal flicks.  There were multiple visits. The kids that went up there had some kinda broken something, like a learning disability or speech impediment.  They were outcasts.  I don’t remember who I saw or what I said. I was about eleven.

One time when we didn’t have any money,  Dad took the sewing machine my mom traded for.  He was sneaky, but I saw him. The cord caught in the door as he left.  I hated him.  I also hated sewing.  My Home Economics teacher, Mrs Lodge, said that I was the worst sewing student she had except for Alice Johnson.  Alice Johnson was the retarded girl in our class (that was how we spoke then). I never finished the baby blue robe I was making in class for my mom. So  Mrs Lodge took it home and finished it for herself over Christmas.  I pictured her in Mom’s robe.  In retrospect that was a bit shitty of her.

Dad would go out for bread and not come back for weeks.  Home was quiet.  I preferred that.  Then Mom got a collect call from Florida or somewhere.  Why am I telling these stories?  Interferon drug out the box..

After my parents sobered up and became adults, it was my turn.  I traveled a similar path but in a nicer neighborhood.  Isn’t that incredible??  I would be visited for a decade by active alcoholism and drugism and to this day intermittent depression. Less intermittent, more depression. One doctor called me a high functioning depressive. I was so proud. It is important to me to do well in all things.

Dad, my daughter and my brother. Dad was about 3 years sober there

BTW my dad and I built a loving effortless bridge when he sobered up.  He was the kindest most humble man.   My daughter spent summers with him and Mom.  They were best friends.  Unconditional love.  Who knew?  I’m just glad we had the second life too.

When Dad died, in lieu of flowers, 100 AA books were distributed in jails. He always helped the down-and-out drunk

Why am I telling you all this shit you either don’t care about or are horrified by?  Interferon drug out the box.  It is the stuff that leaked out of me during treatment.  Remember my suggestion for a therapist that knows about Hepatitis C?  These memories are why.

http://www.cowboylyrics.com/lyrics/classic-country/hey-good-lookin—hank-williams-14934.html

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

Hepatitis C Lingo: What is a Log?

Okay, you are going into treatment.  You must understand the language of treatment progress. No one values your health more than you.

Getting information off the Internet is like taking a drink from a fire hydrant.   Mitchell Kapor

 Treatment response is a topic of great importance to me, you, and doctors.  They need  to see if the treatment is working enough to keep poisoning you.

Viral load is how to measure response. It’s done  by looking at the amount of virus in your blood. Viral load is checked before treatment,  at week 4, 12, and either 24 or 48, depending on duration of therapy, then 24 weeks (6 months) after therapy.   The response is measured in log reduction.    In fact log stands for logarithmic.  So what?  Each log corresponds to a factor of 10.  So what?  A 1-log reduction means virus decreases by 10 times; a 2-log = 100, a 3-log = 1,000, a    6-log reduction = 1,000,000 = 1 million.  Log is a way of not writing down all the zeros.  Just count the zeros gone and you get the number of viruses that died per ml of blood and went away.  Sort of.  There, in one paragraph we discussed a concept that took me some time to learn.  And you thought you would never use that math junk.

When I was in middle and high school, I had it in my head that my brain wasn’t “smart enough” for math and chemistry, even though I skipped kindergarten and the 2nd half of my senior year.   So I avoided the hard sciences.  Remember I was still GOD, grown up on duty, at my house. Then in my 20s, I went to college and I decided I didn’t want to fear math and chemistry any more. I took inorganic chemistry with algebra on the side to understand the language of thermodynamics.  This is an example of how my childhood perceptions always played down my abilities even though my family said I was smart (which I loved but didn’t believe) . I graduated from pharmacy school at 30,  then went back for a Dr. of Pharmacy in my 50s (while traveling around the country for work and, unaware that Hep C was dragging me down).

Why am I interjecting these little stories in the middle of scientific drama?  Because there is no scientific drama!

All measures must have units:  pounds of pressure per square inch (PSI), miles per gallon (MPG), ears of corn per stalk (one).  Notice the word per in each. The  Hepatitis C virus (HCV) is number of copies of the virus per ml of blood. The hepatitis C virus, like all viruses, cannot reproduce by itself. It must first infect a living cell, such as the hepatocyte, and take over the cell’s “machinery.” Using the genetic information in your cell, the hepatitis C virus is able to make copies of itself which can go on to make more copies.  The virus is measured in copies per ml of blood.  I know, weird.

Lindenbach B, Rice C (2005). “Unravelling hepatitis C virus replication from genome to function”. Nature 436

BTW, kids in Middle School know this stuff.  Amazing.    We will talk about RNA another time.  I know you can hardly wait.

Source:  Vertex website, Wikipedia

http://www.vrtx.com/assets/pdfs/VRTXHCVTreatmentResponse.pdf

www.wikipedia.com

and my brain: no link

I Pooped Today, Things to Track with Hepatitis C Treatment

“I Pooped Today”  Important information to track while on Hepatitis C treatment

If you choose to participate in a drug study while being treated for Hepatitis C, be prepared to keep a diary.  Most of these examples are from round one.  You know what they say about experience:  There are those that got it and those that are going to get it.  I’ve been both.  During round two, I knew a lot of holes were out there and walked around them.  Or paved them in advanced.  I did find new ones.

Dear Diary:

How many bowel movements have you had since your last visit? What color is it? I think this is a test to see if I am fixated on poop.  BTW Your family doesn’t want to know about your poop even if they pretend to.  Most people on treatment have frequent stools but not me.  See, don’t you wish you didn’t know?

Get comfortable discussing your bodily functions with everyone in a white coat. You haven’t had dignity for a while. How dark is your urine? I don’t know, it’s diluted when it hits the toilet bowl. Does it smell? I really want to make a nose joke here.

How’s your eating? Food smells and tastes like pennies and my stomach burns. Have you tried not eating spicy foods? I am only eating buttered noodles and Little Debbie Oatmeal Cakes.  Oh.

Brain fog “Loss of ability to concentrate. Memory loss”   How has your memory been?Huh?    Non-participative.  Try to write everything down in one place.  I can’t seem to find my notebook, so I start another. Kinda makes it worse.Try to hold a job let alone a career with that side effect.

Did I take my medicine? When did I take my medicine? Did I take it in lemon duck? Did I take it with a eunuch?  Did I take it on my death-bed?  Did it make me see a dragon’s head?  Write it all down, you won’t remember.  (ref Brain Fog)

Try to get as much sleep as you can. Brilliant. Now I lay me down to sleep, to lie awake with Lil Bo Peep.  Okay, a bit too much rhyming.  But today my brain wants to rhyme. 

Avoid undue excitement. You mean like my brain running The Fifth Element  Flossing Paradise 24/7? We can prescribe sleep medications. Why didn’t you tell me that 6 months ago?

We recommend aerobic exercise 15-20 minutes/day. Are you shitting me? Do I keep track if you are shitting me?

How many times did you have a blinding H/A this week? How many not so blinding?  Let me see, I cry a couple of times a day.  Crying results in a blinding headache.  So I hold in the crying.  The result, “not blinding” headache.  I’m not sure if I am crying on the inside or outside.

Rashes and skin changes. Is that because of medications or just old spots?  What about the ones that are 3-D?

My skin itches. Take an antihistamine. I did. Take Benadryl 50 mg. Spit will fall out of my mouth if I have any secretions Can I see a dermatologist about this?  Sure but it will be weeks before we can get you in.  WTF is a dermatologist so busy doing?

How has your mental health been since your last visit? Can you draw a line on this form to show the change? I can’t give you any more instructions, even if you don’t understand this (silly) form.  The -Y axis is not long enough to document  the rate of my decline.

Do you think we should put you on antidepressants? I don’t know who I am much less what I need. Have you had suicidal or homicidal thoughts? I can’t remember. With or without headaches?

It is Tuesday, time for my weekly injection. Just when I was feeling up line dancing in a circle (props go Dos XX commercial). Where was your injection site last week? In my forehead with a silver bullet.

Because my Hemoglobin (HgB) is so low, I can’t walk  from the parking structure to my work appointments. Can I get a Handicap Placard? No one has ever asked for one before. So can I get one? Bring us the form. The Dr. will have to sign it.

License branch information booth: Do I have to stand in the long line with the masses? If I could stand that long I wouldn’t need a Handicap placard. Then bring someone to stand in line for you. Next