Selena's 2012 Holiday Message

Video Transcript

Hi! It's Selena from the blog Oh My Aches and Pains and I'm recording this video today to show you how I'm doing four months post Hepatitis C treatment.

Now I've got to be honest with you, Hepatitis C treatment really kicked my butt. But I'm a lucky girl because Hepatitis C treatment also seems to have really kicked my Hepatitis C's butt.

I haven't been this sick since, well, when I had my cancer treatment twenty-four years ago. But that's because Hepatitis C treatment in its current form really is just another version of chemotherapy. And let me tell you I've had the side effects and I've had the treatment related problems to prove it!

That said I still really believe that choosing to do Hepatitis C treatment was the right decision for me.

And I'm happy to say that I am starting to feel better. Now I'm not quite back to my pre-treatment level of functioning, but trust me I'm doing much better then I was about four months ago.

I shared with you back on Thanksgiving that my viral load continues to be undetectable. But I'm not pulling out my party hat just yet. I'm waiting get that six month post-treatment viral load result which will determine something called SVR, which is sustained virological response, which is basically a fancy way of saying the treatment worked...and some people are even calling it a cure.

Hey, I wouldn't mind a cure for Hepatitis C. I've lived with it for 24 years and I am definitely interested to find out what life would be like without it.

So I'm looking forward to 2013. I'm looking forward to February and getting those test results.  I'm looking forward to feeling better, to getting back to my pre-treatment level of functioning and finding out what my life looks like, feels like, functions like without Hepatitis C.

I'm happy to say that one of the benefits I'm already seeing from treatment is that my type 2 diabetes is much easier to manage now. In fact, I've had blood sugar numbers that, well, it's been years and maybe even decades since my blood sugar was under such great control. And if my diabetes is better managed because of Hep C treatment then that obviously made it a really good decision from me. 

And that's the thing about Hepatitis C. I know most people say that people living with Hepatitis C will probably die from something other than Hepatitis C. But for me, and I think for a lot of other people, living with hepatitis C is about a quality of life issue. That it does more than just cause fibrosis, cirrhosis, liver failure and liver cancer. It really affects your quality-of-life and causes a lot of other problems, not necessarily life-threatening problems, but things that make life less enjoyable and make you not able to participate as fully in life as you would like.

I've met some really amazing people living with Hepatitis C throughout my treatment experience. And even though I may now be moving forward without Hepatitis C, that doesn't mean I'm leaving those folks behind. I'm a member of the Hepatitis C community and I am committed to advocating on behalf of people living with Hepatitis C until there is a cure for everyone and we can get rid of Hepatitis C for good.

I've been very fortunate that I have responded to treatment. Not all of the people that I've met have responded to treatment. That's why I am committed to continuing to advocate. Because there are great drugs in the pipeline, but there needs to be some collaboration, some cooperation, some working together between the drug companies to come up with an antiviral cocktail that will cure Hepatitis C without all of the side effects from interferon and ribavirin.

So moving forward, that's my goal: to stay connected with the Hep C community and to really be an advocate now that Hep C isn't part of my life and I have more energy to pursue these kinds of things.

Of course, I want to take a the moment to thank everyone who has shown me support throughout this journey. I couldn't have done this without you guys. I couldn't have done this without my husband and my family as well. It's been a rough year and 2013 is definitely going to be better.

I'm glad that I made it through this and I can't wait for a new year and an opportunity to live life Hepatitis C free.

So happy holidays everybody, no matter what holiday you celebrate.

I'm looking forward to planning a party sometime at the end of February/ beginning of March if I get that good news that I'm hoping for in February. And since many of you who have been supported me I've never met in person, we got to figure out an interesting way to have this party online. I'm thinking Skype. What do you guys think? Skype, maybe some Facebook stuff too. I don't know, some chat?

We'll do it; it'll be fun!

Thanks so much and please let me know when I can return the favor.

And be safe, have a great holiday and take some time for yourself. I can't wait for the new year, 2013.

This has been Selena from the blog Oh My Aches and Pains! Happy Holidays!

My Favorite Hepatitis C Health Activist: Lucinda Porter, RN #NHBPM

I've seen the name Lucinda Porter, RN for a long time.  You see, she is a regular contributor to the HCV Advocate website and newsletter, which has been my trusted source for news and information about all things Hepatitis C for many, many years.

I've admired Lucinda for just as long.  Truth be told, I've wished I could be more like her when it comes to my own health advocacy and activist pursuits.  She is prolific in her efforts, contributing newsletters and publications and speaking at trainings and conferences. She's attained the status of a well-recognized and respect expert on Hepatitis C.  She is also a great role model.

So when I saw her promoting her book Free from Hepatitis C: Your Complete Guide to Healing Hepatitis C at the end of 2011, I took a chance and contacted her, asking if I could review her book on my blog.

Her response was an enthusiastic "Yes!"

Since then, I've had numerous interactions with her, allowing me to get to know Lucinda much better, which is all kinds of awesome.  Now I can really see first-hand how much she shares with the Hepatitis C community through Twitter, Facebook and her blogs Lucinda Porter, RN and The Hepatitis Comics: Levity for the Liver.

She gives so much of her time offering support and sharing information with people living with Hepatitis C, especially those going through treatment.   I feel so fortunate to be one of the many people she has encouraged and helped!  She does much of this through several different online support groups she participates in, like the Hepatitis C Family and Friends group on Facebook.

Right now, she is tweeting and post updates from The Liver Meeting, the annual meeting of the American Association for the Study of Liver Diseases on her Free From Hepatitis C Facebook page.

One thing I learned about Lucinda this year is that she lives with Hepatitis C too.  She recently shared her poignant story over on the I Cured Hep C blog: Meet Lucinda; 59, a powerful story of survival living with Hepatitis C! 

It is for all these reasons that I nominated Lucinda Porter, RN today for a WEGO Health 2012 Health Activist Award in the category Silver Stethoscope:

Silver Stethoscope Award

Awarded to a healthcare professional who utilizes social media,online community, and technology to make the world a better place. 

What Are the WEGO Health Activist Awards?

From the WEGO Health website:

The Health Activist Awards were created to embody the mission of WEGO Health: to empower Health Activists. We connect with so many inspiring Health Activists who raise awareness, share information, support their communities, and much more - often without recognition.  Because our network is centered around Health Activists, we knew it was up to us to tell these leaders how great they are.

You can nominate your favorite health activists too!  There are 16 different award categories to choose from and you can nominate more than one person too!  Go to the nomination page or the awards page for more information.

You can find Lucinda's book Free From Hepatitis C at Amazon.com.

Is There a Healthcare "High Road" When You Are Chronically Ill? #NHBPM

Lately I've been wondering if there really is a "high road" when it comes to dealing with the health care system when you live with chronic illness, especially in light of all the problems that emerged during my recent Hepatitis C treatment at the UCLA Health System.

What is the "high road?"

high road

n. 

1.	a.	The easiest or surest path or course: the high road to happiness.
	b.	The most positive, diplomatic, or ethical course.
2.		Chiefly British A main road; a highway.

The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.


In light of what the words "high road" mean, I can say with certainty that my Hep C treatment didn't follow this path!  So naturally, my next question was "Well, why didn't it?"  After much contemplation, I now think I understand "why not."  Ironically, the answer is in the name of my medical care provider network of choice: system.

What Is a System?

At its core, a system is an organized, purposeful entity that is made up of many interconnected and interrelated pieces.  In health care, some of these pieces include: doctors, nurses, allied health professionals, administrators, insurance companies, health care professional licensing boards, pharmaceutical companies, medical technologies, office space, information technologies, politicians and the government.

The people who are part of the health care system are bound by a mission and specific set of beliefs, principles, goals and objectives, procedures, methods and routines.  Within the system there is a unique culture with norms for social conduct, tiers of hierarchy and privilege, boundaries determining who is in and who is out of the system, standards for conflict resolution and mechanisms for how feedback is solicited, received and processed.  People carry out specific activities, perform certain duties and solve particular problems that fit with the mission and goals of the health care system.

So Where Do We Fit in the System?

In the simplest of terms, we are community members who are sick or injured and enter the system as "patients" to receive medical care so we can be restored to health and return back to the community.  To us, health care is a collection of services given to us in an effort to change our state of health.

Another way to look at this is that patients are inputs into, and healthy people outputs from, the health care system.

Which is where I think the problem arises for those of us with chronic illness.  We are not simple inputs.  We present with a persistent state of illness, with health problems the system can't cure and often has trouble diagnosing.  At best, it can only manage our health; at worst, it throws its hands up in frustration and resignation because we just don't leave the health care system as a successful output. That's because the health care system:

• hasn't figure out an appropriate model of care for us that meets our unique needs
• hasn't expanded its definition of  health to include concepts like quality of life and palliative care which is what we are seeking

So if health care is a system, and we patients are the inputs and outputs of that system, what might the high road in health care look like?  Let's go back to the definition to try and answer this question.

The Easiest or Surest Course

Based on my experiences in the health care system, here is what I think the "easy and sure" health care high road looks like:

• patients accept that doctors and other health professionals in the system are the experts
• patients present with medical conditions the doctor can easily identify with diagnostic tests
• those medical problems can be treated and cured with existing medications or procedures
• patients are compliant with medical treatments and instructions
• patients have medical insurance and/or cash on hand to pay medical bills
• patients leave the health care system healthier than they entered it 

I think we can all agree that we have, at some point, tried to follow this path.  In fact, when I first became chronically ill, I really, really wanted my doctor to find something wrong with me that could be diagnosed AND treated successfully.  But alas, I don't have conditions that can treated and cured, only ones than can somewhat managed, an outcome me and many of my doctors aren't entirely happy with.

So no, I don't think an "easy and sure" path through health care exists for persons living with chronic illness.

The Most Positive, Diplomatic, or Ethical Course  

O.K., let try again using the alternate definition.  Despite my long 24 year history with the system, I'm not quite sure what health care thinks is "most positive, diplomatic, or ethical," so I am going to take the liberty of defining these variables myself:

Positive

• educating myself about my chronic health problems so I participate in my health care as an empowered, engaged, equipped and enabled patient
• accepting that my doctors may be limited in terms of what they can do for me
• giving balanced feedback about what is and isn't working for me in regards to the care I receive

Diplomatic

• using active listening skills and working to build a successful patient-provider relationship
• reminding my health care providers about all my chronic conditions
• letting my doctors know about my other health providers, what I see them for and what treatments they provide me
• asking for a second opinion or referrals when a doctor doesn't seem to be able to help me

Ethical

• rejecting substandard medical care and watching out for medical errors
• reporting problems and giving feedback to the health care system
• being a participant in my medical care and exercising my right to have the final say on all medical decisions
• asking for reasonable accommodations as afforded to me by the Americans with Disabilities Act 
• affirming my right to appropriate medical care so I do not suffer needlessly

Wow, that feels much better!  And I am happy to say I have definitely taken this high road and this is definitely the way I want to continue to approach my ongoing healthcare.

I also learned that someone who embraces this viewpoint actually has a name: they're called an e-patients.  I found this article over at ClinicalPosters.com--How Empowered Physicians Can Embrace e-Patients--which discusses in-depth this new category of modern patient.  You'll also be encouraged to know that the Society for Participatory Medicine thinks we e-patients can help heal the healthcare system.

That said, my personal experiences suggest that that the health care system as a whole isn't ready for communicating with e-patients just yet.  Neither does respected physician blogger Kevin M.D. 

But that isn't going to stop me from continuing to travel down this high road.  Maintaining what remains of my precious health is so much more important to me than conforming and letting the health care system squish me like a square peg into a round hole.

That's because I am an optimist...and a fighter, despite the myriad challenges. I believe what Dr. Howard Richards says:

The phrase "fighting the system" alludes to the old folk saying "You can't fight the system." This saying expresses an intuitive sense that whoever wins, whoever loses, whatever group or class wins, whatever group or class loses, the system always wins. The system has remarkable endurance; it successfully defies attempts to change it, and it punishes those who try. Nevertheless, I am saying, you can fight the system if you know enough about (it).

Now that we all know a little more about the nature of the health care system, we can all be encouraged to fight on, not just for healthcare transformation, but for a healthcare revolution that embraces new ways of thinking about health and medical care and replaces the existing norms with more principled and progressive thoughts, ideas and actions.

That's my opinion.  What do you think?

Why Aren't There Any New Fibromyalgia Drugs in 2012? #NHBPM

So I was wondering just the other day why I haven't seen any commercials for new fibromyalgia drugs in a while.

A few years ago I thought we were on a roll.  After all, between 2007 and 2009 there were 3 drugs FDA approved for fibromyalgia: Lyrica, Cymbalta and Savella.

What got me thinking about this topic?   A visit with my new internal medicine doctor last week.  I handed her my "therapy tracker" spreadsheet, an impressive list of 42 different medications, from non-steroidal anti-inflammatories to psychotropics, that I've tried over the past 8 years to treat my fibromyalgia symptoms.  Sadly, the majority of these drugs have failed to help me manage my chronic fatigue, chronic pain and chronic sleep problems.

I asked my doctor to take a look at my list and see if there was anything new or different that I hadn't tried yet.  She said she would review the list but wasn't optimistic there was anything left to try.

Coincidentally, I saw new medications mentioned in the October newsletter from the National Fibromyalgia and Chronic Pain Association (NFMCPA) later in the week.  As you might recall, the NFMCPA is the group that took over the patient care responsibilities from the National Fibromyalgia Association (NFA) back in March of 2011.  According to the article, there are only 2 promising drugs in clinical trials: Effirma or flupertine and TNX-102, a sublingual tablet form of Flexeril or cyclobenzaprine. You can read more about them here.

They didn't mention an upcoming clinical trial that came to my attention this past summer.  Dr. William Pridgen in Alabama, while treating patients for a herpes simplex I virus related stomach disorder, discovered the anti-viral cocktail used improved fibromyalgia symptoms too. According to an article over at the ProHealth website, a phase II clinical trial is being planned for February 2013 to test the efficacy of this treatment in a larger group of patients with fibromyalgia.

Needless to say, I'm concerned those of us with fibromyalgia are lacking a highly-visible, nationally recognized and respected non-profit organization fighting for our needs. A clear example is the fact that National Fibromyalgia Day dropped off the National Health Observance calendar in 2011.  The NFA used to serve as the contact organization for this awareness day.

Pondering the state of fibromyalgia advocacy on the national stage got me asking questions that I probably will never get the answers to, like:

• Is it a coincidence that the NFA's heyday corresponds to the same time period during which the FDA approved the first 3 drugs for fibromyalgia? 
• What role did the NFA have in the development, FDA approval and marketing of the first three fibromyalgia drugs?
• Did the demise of the NFA adversely affect new fibromyalgia drug development?

Wow did I get off topic.  So much for my trip down memory lane.

Leaving the past behind, I'd really like to know more about the current state of fibromyalgia research and drug development.  I'm curious enough about this topic to considering making this my own personal research project, that is if I can't find another reputable source already doing this.

What do you think?  What impact did the end of the National Fibromyalgia Association (NFA) have on our fibromyalgia community?  Why do you think we haven't had any new FDA approved drugs for fibromyalgia in the last 3 years?  What do you think needs to be done to get this important issue addressed with medical researchers and pharmaceutical companies?  Please share your thoughts with me in a comment below.

PFAM - The Fright Files: Stories of Medical Mistakes

Look, I know the supernatural is something that isn't supposed to happen, but it does happen.

~Dr. John Markway, The Haunting, 1963  

Halloween is here once again, the time of year we dress up like ghouls and goblins, head out and ask total strangers for a "Trick or treat!" Having grown up in the era of razor blades in apples, when hospital radiology departments offered free x-rays to ensure your haul was safe to eat, this annual tradition still seems risky to me.  But it doesn't stop the trick-o-treaters from coming to my door every year...

While Halloween is just one day out of the year, the real truth is that tricks and treats happen to us all year long.  Take health care for example.  We keep consuming health care even though, every 7 days, the number of hospitalized patients killed by medical mistakes would fill 4 jumbo jets.  Dr. Marty Makary says that if medical mistakes where a recognized cause of death, they would be ranked number 6, right after accidents and before Alzheimer's disease.

Now that is some really scary stuff.

While it is true that dead men, and dead patients, tell no tales, their families do, and rightfully so, through the media, lawsuits and formal grievance procedures.  But what about the rest of us, fortunately spared an untimely death, but still receiving care that is erroneous, sub-standard or unneeded?

According to ProPublica, an independent, non-profit investigative journalism newsroom, most of the patients affected by medical mistakes do not file formal reports about them and they think this is a problem for all of us.  I found their article Why Patients Don’t Report Medical Errors to be an informative primer on this subject.

Since one of the barriers to reporting errors is knowing who to contact to file a formal grievance, I recently put together a resources list for those living in the United States here.

So I asked participants in this month's Patients for a Moment (PFAM) blog carnival to be brave and courageous. I wanted them to write about the ways that health care has scared them, injured them or let them down.  I hope they inspire you to do the same, because I think to get better health care we all need to be empowered to discuss every aspect of it: the good, the bad and the ugly.

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Poor Iris!  Some pretty scary things happen with her medical care when she was in her 20's, long before she was diagnosed with lupus.  Seems her doctors and other health professionals should have given her more information when they obtained her consent to carve her up and stick a tube down her throat.  Read Medical Horror Stories over at Sometimes, It is Lupus.
         
For some of us, nothing causes as much dread and foreboding as anticipating "the talk" from our doctor about how we need to lose weight.  Kathy from FibroDAZE advises caution though if you doctor suggests taking newly-approved Qsymia and Belviq to help you shed the pounds.  These drugs have the potential to cause some pretty horrific side-effects, which has got Kathy thinking Obesity Has Gotta Be Healthier Than This.

Witches are scary, with their evil spells and potions, like the one from the fairytale Snow White who said, "Take this apple, dearie. Go on. Have a bite."  Duncan Cross knows what is even scarier.  It's when a witch is disguised as a doctor and encourages you to take a drug that turns you into a...well, you'll have to go find out:  Things I Blame on Prednisone. 

Maniacal doctors experimenting on patients, medical procedures conducted without anesthetic and bone-chilling screams; these things don't just happen in the movies, they can happen to you at your next doctor's visit.  Shruti of Lifestyles of the Ill and (mostly) Blameless shares her true story about her encounter with "Dr. Frankenstein" in Tales from the Emergency Room Crypt: Spinal Tap.  It sure sent shivers down my spine!

Oh the creatures of Halloween--zombies, vampires, werewolves and witches--each doing something different yet equally frightening, like eating brains or drinking blood. Did you know there are over 60 different kinds of doctors practicing in our medical system?  They all do something different too and sometimes you have very good reasons for needing more than one of them as Rachel points out in her post #NHBPM - How ridiculous! at Tales of Rachel.

Let me be clear here: it's not just doctors making mistakes or ignoring patient feedback.  In Sometimes The Truth Is Scarier Than Fiction: A First-Hand Account Of A Medical Mistake, Leslie tells the tale of a nursing error that landed her in the hospital for 3 days.  Yikes!  But she says that's not even the most troubling part of her story.  Eek!  See for yourself at Getting Closer to Myself.

Restricting your T.V. time has to be one of every kids' nightmares, especially when that Halloween marathon of Twilight Zone episodes is about to begin.  But can you believe this punishment got imposed on Rachael all because of a drug side-effect?  Read this truth-is-stranger-than-fiction story and its sequel at Offbeat Follies: Mistakes of the Medicinal Kind and The Ghost of Douchebags Past.

Halloween tricks--we all hate them. We hate health care trick too.  Raise your hand if you, like Sharon of After Gadget, have even gone to a doctor's office that wasn't ADA compliant.  What about a doctor who refused to treat you?  You can all put your hands down now and proceed to Waspish Wednesday: Yes, Lyme DID Cause This.

Who doesn't fear that Halloween staple, the haunted house?  Unfortunately haunted houses aren't the only places where weird, shocking, annoying and unexplained things happen.  See Selena's reflections on health care disappointments in Lessons I Learned as a Patient in the UCLA Health System here at Oh My Aches and Pains!

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That's all for this edition.  I hope you have as much fun reading this as I did putting it together.

Please join us again next time!  Amanda at Crazy Miracle is hosting the next edition, so please visit her blog and look for her call for submissions at the beginning of November.

We will also be looking for hosts for the carnival for next year, 2013, so please consider volunteering.  Contact Leslie if you are interested.

Want to learn more about PFAM?  Check out the website and Facebook pages.

Who to Contact When You Need to File a Healthcare Related Grievance

As I discussed on Wednesday in my post Lessons Learned as a Patient in the UCLA Health System, sometimes you just need to file a complaint or grievance when things don't go the way they ought to when it comes to your healthcare.

Since I'm going through this process now myself, I decided to put together a resource list to share with you here on my blog.  I hope my research on this topic will make starting the process a little easier for you. Plus I was pleasantly surprised when I discovered that many of these agencies are set up to take complaints online, which saves you the hassle of printing and preparing forms and heading to the post office to get them in the mail.

So here they are, my suggested list of organizations to contact in the United States when you have grievance against your physician, nurse, hospital and/or health plan:

Hospital and Health Facility Complaints:

Most hospitals and healthcare facilities have in-house patient services departments that may be able to help you.  Start by asking a member of your healthcare team about who is available to assist you, like your nurse, social worker or the receptionist.  You can also call the hospital operator and ask for the name and number of the department that handles patient complaints.

Call your health insurance company.

1. They may have a nurse case management program that can advocate on your behalf.  Their nurses will talk with you, contact your medical providers and working with you to manage your health care.  This may be a free benefit to you depending on your health plan.
2. You can ask to file a complaint against any network or preferred hospital or facility and your insurance company's provider relations department will investigate.  Just know that they may not inform you of the results of their investigation.

The Joint Commission, formerly the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), is a non-profit organization that accredits hospitals and health institutions nationwide.  Their Office of Quality Monitoring will review complaints filed against accredited institutions.

Contact your state's Department of Health.  This is the agency in your state that is either responsible for, or can connect you to, the division that licenses health care facilities.  You can browse a complete list of each states' Department of Health here courtesy of the Centers for Disease Control website.

In addition, your state may have a Health Care Association or Society that might want to hear about your concerns.  While not present in every state, you can see a list for some of the organizations here courtesy of the Joint Commission website.

Physician Complaints:

Call your health insurance company.

1. They may have a nurse case management program that can advocate on your behalf.  Their nurses will talk with you, contact your doctor and work with you both to manage your health care.  This may be a free benefit to you depending on your health plan.
2. You can ask to file a complaint against any network or preferred physician (or other health care providers.)  Their provider relations department will investigate your complaint.  Just know that they may not inform you of the results of their investigation.

Contact your state's Medical Society or Association.  These are membership societies so you'll first want to verify that your doctor is a member.  Then check to see if they are set up to receive complaints directly or if they provide referrals to the organizations in your state who are.  Find a complete list of medical societies here courtesy of the American Medical Association.

Your doctor needs to be licensed to practice medicine and your state's Medical Licensing Board is the entity that handles consumer complaints about doctors.  Look for the complete list here courtesy of the American Medical Association.

NOTE: Your state may also have licensing boards for other allied health professionals, like chiropractors  pharmacists, psychologists, social workers and physical and occupational therapists.

Nurse Complaints:

Nurses also need to be licensed to practice nursing, so if your complaint is about a nurse practitioner, registered nurse, licensed practical nurse or certified nursing assistant, contact the State Nursing Board.  You can view a complete list here courtesy of the National Council of State Boards of Nursing.

Health Plan Complaints:

Health plans are required by law to have a process to receive and respond to member complaints and grievances. So don't hesitate to call your health insurance plan, tell them you are dissatisfied with their services, determination of benefits or the health care treatment received through their plan and want to file a complaint or grievance.  You can also refer to your member handbook or your health plan's website to learn how to use their grievance process.

If you are covered under an employer-sponsored health plan, consider talking to your Human Resources Department or contacting the U.S. Department of Labor’s Employee Benefits Advisors.

To contact your state's Department of Insurance, which regulates health insurance, head to the USA.gov website, click on your state and browse for the category State Insurance Regulators.

For complaints about your Medicare supplemental health plan or prescription drug plan, go here to the Medicare website to learn more about filing a complaint.

For complaints about Medicare, you can either speak with your State Health Insurance Program (SHIP) or the Medicare Beneficiary Ombudsman.

For information about filing a complaint about your state Medicaid program, contact your local County Office of Public Assistance.

Complaints About Medications:

Here is a complete list by state of Consumer Complaint Coordinators at the Food and Drug Administration (FDA) that you can call directly to report drug adverse reactions and other issues with FDA-regulated products.

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This is not a complete list and I welcome your input in revising and expanding this resource.  In addition, I'd like to hear about your experiences in contacting any of the entities mentioned above, both good and bad.  So please feel free to add information and your input by submitting a comment below.

Lessons I Learned From Being a Patient in the UCLA Health System

It's been over six weeks since the end of my Hepatitis C treatment and I've spent some time reflecting on my recent experience as a patient in the UCLA Health System.  Today I'm sharing with you some of the lessons I learned over the last seven months.  I hope some of these observations might be useful to you when you find your health care doesn't meet your expectations.

Sometimes the Health Care System Fails Us

The California Medical Association says:

As a health care consumer, there may be times when you are unhappy with your physician, hospital, or health plan and need to make a complaint. Some problems can be resolved informally simply by talking to the parties involved, but others will require that you follow an official set of "grievance procedures.” 

I'm amused by the easy way this statement attempts to put this issue into perspective.  I'm sure most healthy people might find a measure of comfort in this plainly stated fact, but for me, a more accurate statement would be:

As a person living with multiple chronic illnesses, you will often be frustrated and unhappy with how your physicians, hospital and/or health plan fail to provide you with the appropriate, cost-effective and person-centered medical care that you both need and deserve.

I believe how my Hepatitis C treatment unfolded is yet another example of how the health care system is not organized enough to treat me, a patient with multiple chronic illness.

Sometimes We Really Need Help

Second, can I be honest with you and acknowledge that there are times when I am so beaten down and worn out from my health problems and my medical treatments that I just can't be my best advocate?  Because this is exactly what happened to me!

Can I also say that I am so frustrated when I find myself in this position way more often than I would like, just because I am a sick chick?  I loathe putting my fate in the hands of others, especially when I have been let down more times than I care to count.  But once I got past the feelings of anger and vulnerability, I knew I just had to bite the bullet and ask for help.

Sometimes Conflicts Arise with Our Health Care Providers

I thought I had a good doctor-patient relationship with my hepatologist, a belief was based on the handful of 15 minutes appointment I had with him over the past 4 and 1/2 years.  I wasn't expecting treatment to be easy, but I thought my doctor would be there for me.  So image my surprise when, on two different occasions during my treatment, I realized I needed someone to help me resolve emerging conflicts between myself, my doctor and his hepatology treatment team.

As I admitted above, during treatment I was too overwhelmed by a boatload of side-effects to be able to figure out and resolve these new communication problems by myself. The only thing I knew with absolute certainty was that my needs as a patient were not being met and I was afraid my treatment success would be jeopardized if I couldn't get things straightened out.

Sometimes Even Patient Advocates Fail Us

So at the time it seems logical to contact the UCLA Patient Affairs Department and ask them to help me:

"The Patient Liaisons of the UCLA Health System...assist patients and their family members with various concerns that relate to their overall experience at UCLA. Such issues may include, but are not limited to, quality of care, staff interactions, access to care and general assistance and information." 

Unfortunately I didn't receive the assistance I needed from Patient Affairs.  So on July 24th, during a telephone conversation with the manager of the department, I ask to file a formal grievance.

This is what I thought would happen next:

"When you or a family member contacts the patient affairs office, the chair of the clinical team responsible for that unit reviews your records. The hospital will then provide a written response to you or schedule a conference." 

--Virgie Mosley, manager of Patient Affairs for the UCLA Health System, quoted by the Los Angeles Times

I was told that a formal grievance could take up to 30 days.  It's been 71 days now and I still haven't gotten a response from UCLA.

Sometime We Just Need to File a Grievance

When you are chronically ill, your health dictates that you need to pick and chose your battles.  But sometimes taking a stand is critical to winning the health care reform war.  So I decided last week it was time to pursue official grievance procedures, because I want to be an agent for positive health care change and an advocate from persons living with chronic illness, especially those with Hepatitis C infection.

As the patients using the health care system the most, I think it is our responsibility to thoughtfully bring our most pressing concerns to the attention of entities like health care licensing and accrediting bodies.  Because if we fail to speak up and share our concerns, we squander opportunities for the health care system to learn from mistakes, identify gaps in service and correct problems.

While this rarely will make things better for us in the short term, I truly believe it will make things better for all of us in the long run.

We need to keep our eyes on the prize.  We all want a health care system that knows how to competently and compassionately treat persons living with chronic illness.  To get there, we need to make our grievances known to the member of the health care system that have the power to recommend and implement changes.

Resources

I'll be back Friday with a resource list of organizations in the United States that you can contact when you need to file a grievance.


Related articles 

• Key to Healthcare Costs Is to Better Treat Chronically Ill - U.S. News and World Report 
• Hospital and nursing home complaints have an ear - Los Angeles Times

HEALTHWISE: Hepatitis C Treatment Tips from Patients

This is a reprint of an article from the HCV Advocate September 2012 Newletter, reprinted with permission from the author. The reason I am reprinting it is so you can see how my comments and suggestions were incorporated into this article, which is very exciting for me!

I've enhanced the original article with links to the products I used duing Hep C treatment which go to Amazon.com. You can just as easily find most of these products at your local pharmacy or Drugstore.com too.

By the way, many of the patients mentioned in this article are members of the private Facebook group Hepatitis C Family and Friends.  I too am a member of this group.  I have found the members to be extremely warm and inviting, willing to share suggestions and advice and always there to lend an ear or offer support.  The group is comprised of people thinking about, currently undergoing or finished with Hepatitis C treatment.

I encourage you to join the group to get the peer support you'll need to make your journey through Hep C treatment a better one.

I hope you find this article and its resources helpful.

---

HEALTHWISE:
Hepatitis C Treatment Tips from Patients 
Lucinda K. Porter, RN

In May 2011, two protease inhibitors bolstered the fight against chronic hepatitis C virus (HCV) infection. The FDA approved boceprevir (Victrelis) and telaprevir (Incivek) for treatment of patients with genotype 1. Either drug (but not both) is used, along with peginterferon and ribavirin. With response rates hovering around 80%, these are weapons of mass destruction.

I have a lot of experience with HCV treatment, both personally and professionally, so much that I wrote a book (Free from Hepatitis C) to help patients through the process. However, I have not experienced triple therapy, and I am curious about the real story, the nitty-gritty experiences beyond clinical trials, so I asked the experts—patients.


The following is a collection of tips from triple-therapy patients. Talk to your medical provider before trying any of these. Although brand names are mentioned, generic versions may be cheaper. Some contributors have given permission to use their names. To all, named and unnamed—thank you.


Patient advocacy, in particular self-advocacy was mentioned. “Meet the members of your treatment team BEFORE you start treatment.” advises blogger Selena Inouye (www.ohmyachesandpains.info) Sometimes patients meet their primary nurse the day of the first interferon shot, but ask to be seen earlier to see if you feel comfortable with the nurse. This gives patients time to think about what they were told and formulate follow-up questions.


Selena recommends bringing someone with you to appointments to take notes and act as your advocate. Ideally, your doctor has given you information about what to expect, the risks and available resources to help you navigate treatment. Be sure to discuss what side effects need reporting, who and when to report these to and who will be the main person managing them. Find out how to reach medical personnel when the office is closed and what to do in an emergency.


Write everything down and keep all your notes in one place. Don’t rely on your memory. Document everything your medical provider says, record when you took your pills, note your appointment times, and keep copies of all of your labs.


Know your treatment protocol. Confirm that your medical provider uses a highly sensitive viral load test with a lower limit of HCV RNA detection of ≤ 10-15 IU/ml, and quantification of ≤ 25 IU/ml. If something seems amiss or your medical provider deviates from the protocol, ask questions. Use the pharmaceutical company help lines to educate you, support you, and verify all concerns. Your pharmacy is another resource to use.


Mary Northrup finished treatment in May. “This treatment taught me to be my own advocate. Understand that there will be times where you have no choice but to push through the pain and discomfort, but don’t be afraid to rely on your medical team and your support system to lend you a hand.”


“Don’t be afraid to bug your nurse with questions,” says Mary, and if you are like most, you will have many questions. This solid advice is hard for some to practice. We don’t want to be a nuisance. However, as a nurse, I appreciated questions from patients. Patients with questions are engaged in their treatment. In fact, the ones I worried about the most were the ones who never asked me anything.


Here are some more tips: 

• Order the patient starter kits from the drug companies before you begin your treatment. Read all the materials before your education session and bring a written list of questions with you.
• Don’t try to do too much. 
• Accept help and food when offered. 
• Ask for help. 
• Delegate. 
• Rest more, pace yourself and conserve your energy. 
• Let go of as much as possible. 
• Remember that “No” is a complete sentence and don’t be afraid to use it. 
• If you and your medical provider think that you should go on disability, then by all means, do it. 

Nutrition and 20 Grams of Fat Diet 


Many people stressed the importance of maintaining nutrition, and for those taking telaprevir (Incivek), the 20 grams of fat diet headed the list. This is particularly important, as fat optimizes the effectiveness of telaprevir. Deanne English points out that although this is difficult for nighttime doses it is important.


John Adamski (Lake Tahoe HCV Support Administrator) mentioned that insufficient fat with telaprevir caused anal burning and discomfort, and that taking telaprevir 20 minutes after eating worked best for him. Many echoed Teri Gottlieb’s suggestion of collecting lists of foods with 20 grams of fat. Choose food with high quality fat, such as peanut butter, avocado, eggs, and whole milk.


Eat as healthy as you can, as this provides energy. Before you start, stock up on staples and frozen foods. Include items that may help with tummy upset, such as crackers, rice, applesauce, Melba toast, tea, and ginger-flavored items. Selena suggested variety. Nuts, seeds, and bars are handy to have. Always have on hand the fixings for shake mixes. Selena added a tablespoon of canola oil to Boost Carb Glucose Control.


Digestion and Anal Issues


What goes into the body is important, but the other end of the digestive tract dominated discussion about telaprevir. The big issues are diarrhea, anal burning and itching, and butt rashes. To avoid bottom problems and control diarrhea, John suggests taking a good probiotic with 8 ounces of Kefir. (Selena's note: Be careful with probiotics if you are immune suppressed, i.e. your white blood cell count in below normal.) Many used Imodium; one patient took a smaller dose more frequently, with meals. (Selena's note: try using the liquid and taking 2 ml with meals.) Soluble fiber supplements were also mentioned, helping with both diarrhea and constipation.


To protect the bottom, everyone had personal favorites. One wrote, “Get both Analpram (Selena's note: this is a prescription topical hydrocortisone cream) and A&D Ointment. Use Analpram only for anal itching. All other days, always apply a generous amount of A&D Ointment after defecation; it will save you from considerable pain the next time.” Other recommendations were Balneol lotion, zinc ointment, and diaper rash products such as Desitin. (Selena's note: Balneol saved my butt, literally. And I will continue to use it from now on. CVS makes a generic of it, but the best deal I found was ordering it through Subscribe and Save at Amazon.com.)


Skin Issues


Although itching and rashes were common side effects before, these are more so for triple-therapy. Alyson Shuck and others suggest cool showers and antihistamines such as Benadryl, Zyrtec, or prescription Atarax. Keep the skin moist and use fragrant-free products such as Gold Bond Ultimate (soothing, fragrance-free) lotion . Trader Joe’s moisturizing cream is also good. Selena used Cetaphil Restoraderm body wash and moisturizer. The consensus was to avoid hot showers and the sun.


Other Advice
A critical part of success is to take medications on time and as directed. Selena bought the biggest pillbox she could find and labeled it with pill times. (Selena's note: mine was the Ezy Dose Four-a-day Weekly Maxi-pharmadose Medication Organizer.) Program electronic devices, such as your phone or watch to remind you. 

“Start pounding down water two weeks before therapy,” says John Adamski. “The goal is one-half your body weight in ounces/day.” In other words, if you weigh 150 lbs, then aim for 75 ounces of water daily. 

Find a way to track your water intake. Selena bought a container that held eight glasses of water from Bluewave. She added flavors such as lemon, lime, mint, cucumbers, a splash of fruit juice, and MiO mix (sucralose-based drink mix). 

John mentioned that numerous studies showed that people with high vitamin D levels achieved a higher cure rate. Caffeine also seems to give people an edge. This month’s HCV Snapshots includes information about vitamin B12 and zinc supplementation. If you are interested in supplements, talk to your medical provider about these prior to using them. 

Psychosocial Issues 

Managing the emotional highs and lows of HCV treatment can be summarized in two words: antidepressants and support. Pretty much everyone I talked to used antidepressants during treatment. 

“The first thing I learned was to STAY CALM,” wrote Mary Northrup. She did whatever she could to achieve that goal, including turning off the news. “Go easy on yourself. This therapy can be harsh on one mentally...give yourself permission to be a goof ball.” 

Attend an HCV group. Education, information and identification of resources are a valuable focus of HCV groups. Mary received information and found groups acted as a sanity check. Humor is another benefit often gained by being with those who know what you are going through. Where else can you find a group of people who laughingly refer to themselves as the Friday Night Dart Club? 

Keep friends and family informed. Mary did this via an online journal (or blog). Selena started blogging and then found that Facebook and Twitter were better ways to communicate. 

As for support, Selena says, “Recruit a cheering squad. I used Sign Up Genius to engage my social network.” On difficult days, use your support network to vent. Remember to practice restraint of pen and tongue. If you feel angry or defensive, talk to a friend and don’t post anything hostile for at least 24 hours after running it by a trusted confidant. 

Surround yourself with things you enjoy. During difficult times, distract yourself with anything that holds your attention: audio books, movies, TV, scenery, etc. Every day do something that makes you happy and treat yourself to whatever you need to get through this time. One man praised the power of a relaxing bath using herbal bath salts (legal ones) while listening to calm music. 

Celebrate treatment milestones as you go along—there will be many (first shot, first week, first day that you forgot you were on treatment). “Invite your friends to party with you, even if it is virtually on Facebook or Twitter,” advises Selena. 

“Patients contemplating this therapy need to be determined and accept the fact that they will be fairly miserable for at least a few months of this therapy,” said John. “But look at the CURE RATES !!!” 

Yes, the cure rates make it all worth it. 

More Information

• A Guide to Hepatitis C Treatment Side Effect Management 
• HCV Advocate Fact Sheets and Guides 
• HCSP Fact Sheet: 20 Grams of Fat 
• Slaying the Dragon with Food

Many thanks to Lucinda Porter, RN and The HCV Advocate website 

for being trusted sources of information for me on Hepatitis C and its treatment.

My Hep C Treatment: A Mad Dash for 2nd Opinions

I promise this image will make sense
when you get to "the kicker" below.

The story of my Hepatitis C treatment continues...

A Mad Dash for a Second Opinions

So here I was in week 20 of my treatment, discovering my hepatology team made a medical mistake and realizing that I needed a second opinion...or two!

My first thought was How crazy is this?

So let's start with a re-cap. I told you last time that Hepatitis C treatment is an all or nothing proposition. Once you start you have to keep going until you are done.

 Along the way, you get side-effects, lots of side-effects, many similar to the side-effects people get while undergoing cancer treatment. You can read about my side-effects here and here.

But unlike cancer treatments, where you get a little time to recover between chemotherapy sessions, Hepatitis C treatment is relentless. You take your medications every day, every week, every month for up to 48 weeks with no break, no respite and absolutely no stopping.

This treatment has real potential to wear you down and grind you into the pavement.

So was I in any shape to start looking for a new doctor at week 20? Absolutely not!  But I dug deep and did it anyway because my gut said I needed to...

Santa Monica-UCLA Medical Center: Part One

So it's week 20 and I thought myself a bit lucky when I found another hepatology in UCLA Health System at the Santa Monica-UCLA Medical Center who had almost immediately availability. And I went to the appointment with fingers-crossed that his separation from the UCLA Westwood Medical Center meant I might be able to get a true, independent second opinion.

Turns out, I was seeing the new Chief of Hepatology who had only been hired a few months prior. It seems that no one knew he was there yet.

 We talked and identified two issues: 1) my lack of a week 4 viral load and that fact that my week 3 viral load was detectable at less then 43 IU/ml and 2) whether my three weeks of prior treatment in 2007 meant I should have automatically received 48 weeks of treatment from the start.

By the end of the appointment, I did not have any answers to my questions.  Instead he admitted that he was not an expert in Hepatitis C treatment. He did, however, have several colleagues involved in Hepatitis C research that he could consult on my behalf. He also told me that he had trained my current hepatologist and would call and speak to my doctor.

To get all this done, he requested that I come back in a week for his answers.

I left with an uneasy feeling about this doctor. A little voice told me that his past connection to my current doctor meant things could definitely go either way: surprisingly well or horribly wrong.

Part Two

A week later, week 21, and I am back again seeing the Chief of Hepatology. I've already been to see my current hepatologist on Tuesday and he absolutely refused to extend my treatment past 24 weeks.

So on this Thursday the Chief tells me he has spoken with two experts who both agreed that 24 weeks of treatment is enough.  Only he doesn't tell me who these experts are and I wonder if he conveyed my medical information to them accurately.

Next he tells me that Vertex, the maker of Incivek, is currently conducting clinical trials to prove that just 12 weeks of triple treatment is enough for someone like me.  That's all well and good, but I am not part of that clinical trial, am I?

Then he talks about Gilead, another Hepatitis C drug maker, and their wonder drug that will be approved in 2 years. He gushes that this latest generation of antiviral drug will make Hepatitis C treatment more successful and easier: so easy that primary care doctors, not hepatologists, will be the ones to prescribe and manage it.  I guess this is supposed to be my back-up plan...and I wonder if he owns stock in the Gilead.

I don't really want to hear about clinical trials and better drugs. I want my current treatment to be the very best it can be and get rid of my Hep C NOW. Even so, I do try to put my skepticism aside and believe him.

But Then Comes the Kicker...

After the discussion, he asks to do a physical exam. I am laying on my back on the examination table waiting for an abdominal exam. My husband and another doctor are in the room with me too.

As he is standing right over me, looking down on me, he says, "It seems you are a patient that wants to direct her medical care and tell her doctors what to do. This is why medical doctors often don't get very good treatment because they are trying to micro-manage their own medical care."

He meant it as an insult, my friends, and I got a glimpse of how he really felt about me being my own best patient advocate.

I walk out discounting this doctor's advice and appalled at his lack of professionalism. I was so furious I tweeted his words out to my followers on Twitter while on the drive home.  My tweets inspired this blog post by a fellow blogger at Fightin' the Fibro.

Another Week, Another Second Opinion

It's now week 22 and I go to get a second second opinion with a hepatologist at Cedars-Sinai.

Right off the bat I am impressed when this doctor takes his time with me. He even compliments me on having all my records together and being knowledgable and informed about my treatment and Hepatitis C. He even takes the time to explain aspects of my treatment to me that the UCLA hepatology team never did.

That said, he did ultimately come to the same conclusion: that my treatment length should be 24 weeks. However he explained to me in detail how he arrived at his decision which really helped me to accept it. Let me share some of those details with you:

Yes, he did think the timing of the viral loads was important in determining treatment length. But of course I don't have a week 4 viral load and there is nothing to be done about that now. He is assuming I would have been undetectable somewhere between week 4 and week 7.

He went on to say that the anemia I've had since week 2 does predicts a better treatment response. Plus the way he talked about how he would have managed my treatment-related anemia differently actually made me wish he had been the doctor treating me this time!

Overall, he does think I have responded really well to treatment and he is very confident that the treatment I did receive has a very good chance of working.

Most importantly, he told me that my interferon-related mild retinopathy is a non-issue, especially since it had almost completely resolved at my last eye exam. That news alone was worth going to this consultation. What a relief to know he does not think that, during the remainder of my treatment, I am going to wake up blind one day.

His main reason for wanting me to take the risk of stopping at 24 weeks is the promise of newer antivirals that will have significantly fewer side-effects. In his mind, if my Hep C does come back, retreating in 5 years when these drugs are approved by the FDA would be so much easier on me than extending my current treatment to 48 weeks now.

He did make it clear he won't take over my care now, but is willing to have me as his patient if I don't clear the virus in 6 months.

This hepatologist is a risk-taker. And I get it; my missing week 4 viral load does now add an extra element of uncertainty to my current Hep C treatment. I admit I didn't leave this appointment 100% happy about his advice. But ultimately I came see that I need to accept the things I can not change, make the best of a bad situation and just move on...

So after discussing his advice at length with Robert (who has been with me at all my Hep C treatment appointments) and sleeping on his advice, I ultimately decided to follow it.

P.S. If you are so inclined, you can listen to my thoughts on my second opinion over at Cedars-Sinai by clicking here: Selena's Update on Her Hep C Treatment by SelenaMKI

That Brings Me to Today...

It is now week 24 and I am scheduled to end my Hepatitis C treatment tomorrow, Thursday, August 9th. I take my last two hot pink "girl power" ribavirin pills at 5 PM.

Unfortunately I won't know for sure if this treatment has been succesful until 6 months after I complete it, which will be in February 2013. The doctor at Cedars said a good predictor of success will be the viral load I will have drawn 3 months post treatment, which will be in November.

I also filed a formal grievance against my UCLA hepatologist two weeks ago with the UCLA Patient Affairs Department.

So where does that leave my post-treatment follow-up?  I don't have a new hepatologist and I certainly don't want the stress of going back to see the old one.  So I am headed back to my primary care doctor at UCLA on August 20th to discuss this further with her.

I've kept my primary care doctor in the loop with email updates on my treatment over the past six months.  I have a very good rapport with her and I know she can order my labs, examine my belly and manage my remaining side-effects easily and more effectively than the UCLA hepatology team did. Yes, it might mean extra work for her, but she has already been much more involved in my Hep C treatment than I ever imagined she would have been.

Hopefully my primary care doctor can save the day and successfully guide me through my post-treatment recovery time.  If not, never fear, I do have a Plan B. After all, us sick chicks need to be prepared for all possibilities, right?

How My Hepatitis C Treatment at UCLA Went the Wrong Way

I should start this post by explaining that Hepatitis C treatment isn't something you can stop and restart.

Because you are attacking a virus, once you start you can't stop until 1) you have complications that end your treatment or 2) you complete your course of treatment. Because you are attacking a virus, you have to be as close to 100% perfect as possible when taking your medications. Every little misstep in your treatment, skipping a dose or taking it late, allows the virus to build resistance to the medications you are taking, which might mean the drugs stop working.

Talk about pressure!

So worst case scenario, if I don't remain undetectable 6 months post treatment, I can never take Incivek again or its cousin Victrellis because my virus will be immune to both of them.

Now that you know a little more about the nature of Hepatitis C treatment, you'll understand why I was so concerned three weeks ago when I realized my hepatologist at UCLA didn't follow the Incivek treatment protocol.

Yes, my doctor made a big mistake and it was me, the patient, that discovered it.

Discovering a Big Mistake at Week 20

I was talking to a friend back on July 10th.  She shared how she went for a follow-up appointment and her doctor asked her if she wanted to end her Hepatitis C treatment at 24 weeks.  My friend had learned from Vertex, the manufacturer of the drug Incivek, that if your viral load is detectable below 1,000 IU/ml at week 4 and/or week 12, your total treatment time should be 48 weeks (see Table 1 below.) 

Table 1
Click on the image above to see it full size.

Having done her homework, she informed her doctor that she couldn't stop at 24 weeks because her week 4 viral load was still detectable.

Like my friend, I have been treated with the triple cocktail of Incivek, Pegasys and ribavirin. If you recall back on March 28th, I shared with you my week 3 viral load, which was less then 43, meaning it was still detectable. As I compared my situation to hers, I realize that my doctor had made a huge mistake: he neglected to draw a week 4 viral load on me!

I panicked and wondered, "How could my doctor decide my treatment length should be 24 weeks without my week 4 viral load?"

A Bad Doctor-Nurse-Patient Relationship

Not my actual doctor and nurse,
but they could definitely be stand-ins.

Now before I started treatment, I thought I had a good relationship with my doctor. But then the hepatology nurse came into the picture...

At my education session on February 23rd, she presented herself to me and my husband as an "expert." She told us about the numerous clinical trials she had been involved in with Hepatitis C medications and remarked how she told the drug companies how their medications should be used. She talked about treating Hollywood celebrities who had Hepatitis C (no, she didn't drop any names) and knowing everyone at UCLA from "the chancellor to the janitor."

When I asked her questions about the treatment I was about to begin, she seemed annoyed with me. I got the sense that she wanted me to listen and she would do all the talking.  Then, when she was done, I started my treatment with my first shot of interferon.

I made it through the education session, but left feeling like this wasn't a good interaction. I know that if I had met her a few weeks prior to the start of my treatment I would have said "Thanks, but I've changed my mind." and walked out the door. But I met her on the day I was starting my treatment and, with the expensive drugs approved and in my hand, I felt like there was no turning back.

The Story of My Missing Week 4 Viral Load

Here is the perfect illustration of the communication problems I've had with the UCLA hepatology team--the story of how my week 4 viral load never got drawn:

I went to have my first viral load since starting Hepatitis C treatment drawn on Thursday, March 15th.  I went that day because the hepatology nurse instructed me to get it drawn at that time. She even wrote at the top of the lab slip she gave me "week of March 12." A few days later I was in the clinic seeing my doctor on Monday, March 19th.

The doctor and the clinic nurse practitioner saw my lab results in my chart. Yet no one said anything to me!

If someone had been paying attention, someone would have said, "Hey Selena, I see you had your viral load drawn at week 3. We really need to get one at week 4, so let me give you a lab slip and have you go back to the lab at the end of this week and have that test drawn again."

But no, that conversation never happened.

Another time to discuss this issue would have been at my appointment on May 29th. I had my week 12 viral load drawn earlier in the month on May 19th. This would have been the time my hepatology team would have reviewed my week 4 and 12 viral load results and used the treatment protocol (Table 1 above) to decide my treatment length.

Was there a discussion at my appointment with me about how they made their treatment decision? No. Instead I was simply told my treatment length would be 24 weeks.

It's the Patient Responsibility to Inform Doctors of Their Errors?

Here I was, the patient, discovering the my doctor had made a mistake at week 4.  And here it was, 20 weeks into my treatment. Given the past communication problems, I dreaded having to bring this mistake to my UCLA hepatologist's attention.

To prepare for my appointment, I pulled out the notes Robert took at my treatment education session on February 23rd with the hepatology nurse. Robert wrote, "a detectable viral load at week 4 or 12 might extend the length of my treatment." So clearly instructing me to get a viral load at week 3 contradicts what she told Robert and me in her education session. I was so upset that I hadn't caught her mistake!

Next I reviewed the prescribing information that came with Incivek (see table 1 above.) That was followed by a call to a nurse at the Vertex GPS Patient Guidance and Support program, who confirmed with me that, based on my lab results, my treatment length should be 48 weeks per their guidelines.

Finally, I called the UCLA Patient Affairs office. I request that they act as my advocate when I talked to my doctor. The representative I spoke with said it was my responsibility to bring this to my doctor's attention and declined my request. What I didn't know until after my appointment with my doctor is that  he called the hepatology nurse after talking to me and told her everything I said.

My Doctor's Decision

When Robert and I saw my hepatologist and the hepatology nurse on July 17th, my doctor got straight to his point and told me he would not extend my treatment beyond 24 weeks. So what about the missing week 4 viral load?  He told me that he assumed my viral load would have been undetectable at week 4. I told him I didn't feel comfortable basing my treatment decisions on assumptions. He just reiterated his decision; it clearly didn't matter what I thought.

I pushed back. I told him that in the absence of a week 4 viral load, I wanted the most conservative course of treatment, which I thought was my best chance at beating Hepatitis C--48 weeks of treatment. He came back with what he considered to be a very serious concern about extending my treatment: that the interferon-related retinopathy I experienced could come back and make me blind.

First let me say that when my retinopathy was first discovered at week 8, I told the hepatology nurse that permanent eye damage was not an acceptable outcome for me. But she assured me that there were things we could do to address and manage this side effect before ending treatment was considered. So I went for regular monthly eye exams to monitor the retinopathy and the team reduced my dose of interferon at week 13.

I actually though this problem was resolved since the retinopathy had almost completely disappeared at my last eye appointment on July 9th.

When the doctor left the room, the hepatology nurse stayed behind and explained to my husband that the monthly follow-up eye exams and the dose reduction were no longer acceptable ways to address the retinopathy. She was also concerned that my prescription insurance wouldn't cover my treatment after 24 weeks. So I asked her to give me the contact information for the pre-authorization department at my prescription insurance where she said she had been FAXing my viral load counts during my treatment.

She left the room for a few minutes, returning with a piece of paper in her hand with the information which she gave to me.

Needless to say, I left not believing a word my doctor told me. For starter, he didn't take any responsibility for my missing week 4 viral load.  He also didn't mention consulting my eye doctor when referring to his concerns about my retinopathy.  What he said and how he dealt with me greatly reduced his credibility in my eyes.

Lies, Lies, Lies

So I called the pre-authorization department at my prescription insurance when I got home from my doctor's appointment.  I learned from a representative there that the UCLA hepatology team had not been FAXing copies of my HCV viral load counts to them as they had requested. So I FAXed those results to him.

The next day, he presented my case to their clinical team, who immediately approved me for 48 weeks of treatment.

When I spoke to him again, the representative told me if they had been given accurate information throughout the pre-approval process, my insurance would have authorized 48 weeks of treatment at week 12.  He also told me that I was the very first patient to ever call and tell them that their doctor wasn't following the treatment protocol. But then he informed me that the prescription insurance company cannot make my doctor extend my treatment and he could only encourage me to get a second opinion.

When I informed the hepatology team the following day of my prescription insurance's decision, the hepatology nurse prompted called them and canceled my pre-authorization. She also informed the same representative I had spoken to that it was my fault that the week 4 viral load was not drawn.

Where That Left Me

As a wise person said to me during this horrible week, "It is worry that makes us sick." I didn't want to worry, I just wanted to slay the dragon Hepatitis C and do the very best I could at it.  It was then that I realized that the only way to get my treatment back on track was to get a second opinion from a hepatologist not associated with UCLA.

---

That's all I have in me for today. I hate to leave you on a cliff-hanger, but I promise I'll be back again soon to tell you about the second opinion I got and how it helped get my Hepatitis C treatment back on track.

Related articles

• Update: Where I Am at in My Hepatitis C Treatment (ohmyachesandpains.info)