The Stresses of Seeking Medical Treatment for Fibromyalgia

I got a very nice email from a friend the other day.  She said to me, "I hope that your pain is well managed.  It must be difficult to get doctors to not only believe but understand how life is miserable with pain."

What a great friend, right?

While I appreciate her support, I'm not sure how to reply.  You see, the awful truth is, despite all my attempts to reach this elusive goal, the bottom line is that my pain isn't what I would call "well managed."

I mean, I do the best I can do with my toolbox of self-help strategies.  Those include planning, pacing, problem-solving, activity modification and use of adaptive equipment.  Self-help techniques do provide me with a framework for living within the boundaries of my illness-imposed limitations.  They also can help with pain flare-up prevention, at least some of the time.  But is figuring out how to live as best I can with chronic pain really the definition of "well managed pain"?

I think not.  My idea of well managed pain would be a treatment program that over time:

• decreased my pain and fatigue levels
• improved my sleep
• allowed me to perform more activities of daily living
• increased my capacity for exercise and other activities
• allowed me to return to normal activities, like work, league bowling, long bike rides and walks, frequent travel, etc.

I truly believe that I am doing as much as I can to manage my pain.  So what is missing?

If you Google "fibromyalgia," you'll find links to many reputable health and medical websites.  One of the first things these sites will tell you about fibromyalgia is that:

• it is currently incurable
• your doctor's treatments combined with good self-care will decrease pain and minimize symptoms
• there are drugs in the research pipeline that may help this painful condition

It's 2013, I've lived with fibromyalgia for almost 9 years now and I know for a fact that fibromyalgia still isn't well understood by the medical community.  This ongoing lack of basic knowledge about fibromyalgia--what causes it, what parts of the body are involved, the exact nature of the bodily dysfunction it causes and how to reverse this dysfunction--all translate to a lack of medical treatments that can successfully decrease or eliminate pain and other symptoms for all who suffer from it.

The second thing they will tell you is that the key to chronic pain management is a multidisciplinary approach, a fancy way of saying that you should be treated by a team of medical professionals.

So do I have a team of medical professionals helping me manage my fibromyalgia?

Once upon a time, way back in 2006, I benefited from this approach for a brief six weeks when I attended an outpatient chronic pain and fibromyalgia rehab program.  I struggled to find the energy and transportation to get there, but it was well worth the hassle.  The program was staffed by a physical therapist, an occupational therapist and a pain psychologist.  This experience became the basis of my current self-help tool box.  It also spurred me on to pursue further study through the online CFIDS & Fibromyalgia Self-Help program.

That rehab program was a good start, but follow-up and ongoing care was lacking once I completed the program.  And the doctor who sent me to the program didn't seem have much else to offer me in terms of treatment.  Which seemed odd to me, especially since other participants in the program shared about the treatments their doctors were offering them, things I hadn't been given the opportunity to try.

So I sought out treatment from another pain specialist, who prescribed a new combination of  treatments for me. But when I tried these options and they failed to bring relief, my treatment came to a screeching halt.  My doctor threw up his hands (figuratively) and proclaimed, "I don't have anything else to offer you." which was delivered with a generous subtext of I'm ending this doctor-patient relationship since I can't help you.  That left me once again searching for a new doctor.

Over the past 9 years, I've simply lost count of how many times variations of this  scenario have played out...over and over and over again.

These multiple, discouraging encounters with doctors--specifically the rheumatologists, pain specialists, physical medicine and rehabilitation specialists and neurologists who claim they treat fibromyalgia--leave me scratching my head and asking:

Why is it O.K. for a doctor to give up and dump a patient when they encounter a medical problem that is difficult to treat?

Is it any wonder that my pain is not well managed when my biggest problem is finding a doctor that understands my pain AND is willing to treat me for the long haul?

Unlike those doctors, I can't just simply throw in the towel.  This is my life and I want and need to do all I can to get my fibromyalgia symptoms addressed and properly treated.  Unlike them, I refuse to give up just because life handed me a difficult medical condition. I know I need medical professionals to partner with me so I can obtain as much relief as possible, so I keep searching for the doctors and other allied health professionals that will help me accomplish this goal.

So what saves me from the ongoing stresses of seeking medical treatment for fibromyalgia? My personal rule to Have Fun Every Day and my written list of fun activities that I enjoy doing despite my chronic pain.

Feeling stressed out by your healthcare too?  Try my personal rule Have Fun Every Day and create your own list of things you love to do that can distract you from the stresses of chronic illness and bring some joy and happiness into your life despite your health challenges.

Will You Be Able to Afford Your New Health Insurance?

Last November I wrote about my displeasure with the changes coming in 2013 to medical flexible spending accounts (FSA), the result of more provisions of the Patient Protection and Affordable Care Act (PPACA), a.k.a. Obamacare being implemented.  But those aren't the only changes looming on the horizon.  2014 and 2018 are also years when more big changes are coming.

Increased Out-of-pocket Medical Expenses

I was quite taken aback when I found out the ceiling on health plan out-of-pocket expenses will rise to $6,000 for individuals and $12,000 for families starting in 2014.

First, let's answer the question: So what are out-of-pocket medical expenses?  They include things like deductibles, co-insurance, premiums and co-pays; they are the "cost-sharing" provisions in your health insurance plan.

I logged into our health insurance plan's website to see what our out-of-pocket maximums are for this year and discovered they are no where near the new 2014 $6,000/$12,000 limits.  Then I got worried.  What if my husband's employer decided to raise the out-of-pocket maximums to the new limits in 2014?  How much would we have to pay out-of-pocket before our health insurance benefits actually kicked in?  And how are we going to be able to afford to pay these higher out-of-pocket medical costs?

Harder to Deduct Medical Expenses

Adding insult to injury is that fact that this year, deducting itemized medical expenses on your Federal taxes is going to be much harder.  Before, you could deduct any expenses that where higher than 7.5% of your adjusted gross income.  Starting in 2013, that percentage rises to 10%.

So we are facing higher out-of-pocket medical expenses and a reduced ability to deduct them on our taxes.

New Trend: High Deductible Health Plans

So how did our legislators decide on these new out-of-pocket medical expense guidelines?  They were set based on rates associated with high deductible health plans.

According to Kaiser Health News, high-deductible plans are becoming the new trend in health care coverage. They say that Fortune 500 companies like General Electric, Chrysler, Wells Fargo, American Express, JPMorgan and Whole Foods are all switching the health plans they offer their employees to this model.

Historically, most people who got a high deductible health insurance were healthy.  They didn't think they'd need to use their health insurance, so they choose this option "just in case" something might happen.  Hence these plans were sometimes called catastrophic coverage plans.

Employers like these plans because it means they can contribute less to their employees' health care costs.  In the changing world of health plans, these kinds of plans are now being viewed as "consumer-driven" which adds to their appeal.  Here's how this thinking goes:

If the employee has to pay with their money first to get medical care, then they will:

1. take better care of themselves to avoid needing medical care 
2. be more concerned about medical costs and 
3. opt out of unnecessary tests and procedures when they do go to the doctor

Are These Changes a Recipe for Disaster?

O.K., so I have some questions and concerns.

How is the average patient supposed to "shop" for low-cost, quality medical care when this kind of information is currently not available?  And how are patients supposed to know what medical tests and procedures are needed and which ones aren't?

What will we have to do?  Take our laptops with us to medical appointments and use Dr. Google to figure out if what we are being told is the standard of care?  Or worse, delay care so we can research the alternatives before making a decision?

I think this high deductible health care model is so unfriendly to those of us with chronic illness!  How we all *wish* it were as easy as just "taking better care of ourselves."  We need to see our medical providers just to maintain what reduced quality of life and level of function we do have.

Plus is lower cost medical care really the answer for people living with chronic illness?  Many of us started with general practitioners when we first became ill and quickly learned that we needed specialists in order to get accurate diagnoses and treatments.  Specialists will cost more to see, but in the long run, they are often the only ones who possess the knowledge, expertise and skills needed to keep us stable and functioning to the best of our abilities.

How I View These Newest "Reforms"

So we are all going to be mandated to pay for medical insurance.  Then we are going to have to pay high out-of-pocket costs to access the health care system before that medical insurance kicks in and starts actually paying the bills.  Which means some people will have a whole new problem--will they be able to afford to use their new health insurance?

I think offer health plans that erect financial obstacles to obtaining necessary medical care is ridiculous.  How does this make any sense?  I think these new guidelines and trends will mean that people will forgo medical appointments when they don't have the money to pay out-of-pocket expenses.  And when people put off seeing a doctor because they can't afford it, this increases the number of health complications, trips to the emergency room and hospitalizations.

So is health care reform really helping us or just making things more difficult and complicated?  I have serious doubts that this will make health care more accessible or affordable.  I'd love to hear what you think.

Today is World Diabetes Day 2012 #NHBPM

One of my many chronic illnesses is diabetes, so I want to take some time today to acknowledge and celebrate World Diabetes Day 2012.

How I Learned I Had Diabetes

I was diagnosed with type 2 diabetes in January 1999.  To be honest, I don't remember if I was having any of the sign and symptoms of diabetes back then like:

• Frequent urination
• Excessive thirst
• Increased hunger
• Weight gain or weight loss
• Tiredness
• Lack of interest and concentration
• Vomiting and stomach pain (often mistaken as the flu)
• A tingling sensation or numbness in the hands or feet
• Other signs include blurred vision, frequent infections and slow-healing wounds

For people who are developing type 2 diabetes, these signs and symptoms may be mild or absent.

My diagnosis was confirmed with blood tests that my primary care doctor ran, which included an A1c test.

Now I do have a family history of type 2 diabetes on my father's side of the family.  My Grandpa developed diabetes in his retirement years and a cousin developed it as a young adult.  But that doesn't really explain how I got it.  Research is showing that having chronic Hepatitis C (Hep C) infection can trigger the development of type 2 diabetes, especially in people who have a family history of the disease like I do.  According to Science Daily:

...Hepatitis C apparently brings on diabetes at 35 or 40, instead of 65 or 70.

When I was diagnosed I was 34.

The Hepatitis C/Diabetes Connection

Type 2 diabetes occurs when the body cannot effectively use the insulin it produces. Insulin is a hormone made by the pancreas that shuttles glucose from the blood stream into your cells where it is used it for energy.  When this process doesn't work correctly it is called insulin resistance.

Hep C creates insulin resistance.  It does this by turning off an enzyme called AMP-kinase (AMP-K,) which is responsible for maintaining the energy balance in our cells.  When it is turned on, sugar is transported into our cells and energy production in the mitochondria occurs.  When AMP-K is turned off, cells produce fat, which is what the Hep C virus needs to cover the newly replicated viruses it makes inside your cells.  

(I also wonder if this is the reason why so many people living with chronic Hep C infection have such huge problems with fatigue...)

Primary Care versus Endocrinologist

I know that many people who have diabetes never see an endocrinologist or diabetes educator.  Their primary care doctor manages their care and maybe they get sent to a class or two on nutrition or diabetes self management.

Here are some of the benefits I see in having an endocrinologist working with you on your diabetic control:

• every endocrinologist's office has a certified diabetes educator
• most also have a nutritionist 
• they provide ongoing diabetes education and support whenever you need it
• they can give you free samples of diabetes medications to try 
• they can give you a free glucometer 
• they know all the latest diabetes medications and can switch you to something different quite easily

Managing Diabetes is a Big Job

I know that if I hadn't been followed by an endocrinologist since 2003, I would have been in much worse shape!  The biggest problem I've had managing my diabetes has been related to Hep C.  I noticed that when my Hep C viral load went up, my diabetes would start going out of control.  That meant switching my diabetes medications several times over the last 9 years to get things back under control.

Before I started Hep C treatment we discussed what might happen, since treatment can make your diabetes either worse or better.  My endocrinologist sent me home with a sample of long-acting insulin so I could be prepared to start using it if necessary.

And sure enough, I ran into problems with high blood sugars, into the 300 mg/dL range at one point.  Fortunately, the diabetes educator was there to help me learn how to use insulin.  We corresponded weekly via email or phone until we got my insulin doses just right, and it took several weeks to get there.  Plus she called in prescriptions for all the new things I needed: pen needles, lots of test strips, a glucagon kit and a second, short acting insulin.

Thank goodness for my endocrinologist and her team, because I know my primary care doctor just doesn't have that kind of time and flexibility to work with me when things get really wonky with my blood sugar.

Diabetes Education is Important

The theme of this year's World Diabetes Day observance is this: education is of the utmost importance in the prevention of diabetes complications.  

I know this first-hand.  I also know that the best sources for diabetes education are in an endocrinologist's office.

So please, speak up and ask for a referral to see one, even if it is just for a consultation.  Let the experts in diabetes give you the information you need to prevent diabetic complications, like eye damage, nerve damage, heart disease and amputations, so you can live a full and healthy life despite it.  Let them instruct your primary care doctor on what treatment course is right for you and be there to help if your blood sugar starts getting out of control.

I truly believe access to this kind of specialty health care should be a right for everyone who is diagnosed with diabetes.

As for me, we'll have to see if:

• I have cleared my Hep C infection (I'll know for sure in Febraury 2013)
• being Hep C negative has a positive effect on my diabetic control

Creating Better Doctors' Offices for Better Healthcare Experiences #NHBPM

I spend way too much time going to see doctors.  Given that my usual trips leave me with plenty of time of soak up the scenery--or lack thereof--while waiting patiently for my 15 minutes, I've got some opinions on what works and what doesn't work when it comes to medical settings.  So today I am going to offer suggestions on how you can redesign your medical office space.

The Waiting Room

This is a place where first impressions are made.  A clean, neat and tidy waiting room makes me feel more confident about the care I am about to receive.  A dingy, messy and unattractive space make me wonder what in the world I am doing there.

So for starters, I'd suggest a nice coat of paint in a soothing color, like blue, green, gold, yellow, red brown, red violet or soft gray. Keep the shade on the lighter and brighter side so the spaces in the office feel more open and comfortable.  Be sure to extend those colors from the waiting room into the other rooms too, because nothing screams cold, impersonal and clinical like a plain, white examination room.

Once the walls are painted, color-coordinate the furniture, fixtures and decor so everything has a pulled-together look.  And for goodness sake, don't just buy chairs and couches on looks alone; have someone from your office test drive them to make sure they are comfortable!  Just like Goldilocks, a patient will be happier waiting 30 minutes for you in a chair that is "just right" versus a chair that is too hard or too soft.

Be sure you have enough seating surfaces to accommodate your patient flow, but not so many that patient are cramped together and invading each other's personal space.

Having something nice to look at on the wall also helps.   I think artwork is preferable over TVs, which are usually too loud, intrusive or tuned to a program no one in the waiting room wants to be watching.  Soft lighting and ambient music are nice touches too.  If you decide to add plants or a fish tank, just be sure someone is going to take care of them, because nothing is more unappealing than flora and fauna struggling to survive.

My last suggestion has to do with the reception desk.  Nothing can be more tiring and frustrating that having to wait in a long line to get checked in, so consider a sign in sheet for small offices or a take-a-number call system for larger offices and clinics.  That way patients can comfortably relax in the "just right" chairs you've picked out for them.  I prefer a reception desk where I can sit down across from the receptionist and be able to complete paperwork on a table-like surface.  If that is not possible, then add a table and chairs to the waiting area so this task is easier for patients.

If the receptionist also answers the phone, schedules procedures or discusses patient care matters with you, consider added a screen to the reception desk.  A screen helps maintain patient privacy for those conversations.  It also creates a more soothing atmosphere where patients aren't bombarded by the noise and activity going on in your front office.

The Exam Room

My biggest pet peeve about exam rooms is the temperature.  They are always either too hot or too cold.  Either way, the wrong temperature can be a huge distraction during my visit with you.

Next is the seating arrangements.  Personally, I don't want the exam table to be my only seating option in the room.  So please, have at least one, and preferably two, comfortable chairs in the exam room specifically for the patient and their caregiver.

As for that exam table, I find a table that is low to the ground much easier to climb onto.  Then if you need me to be higher, raise me up when you come into the room.  Barring that, a nice sturdy step stool next to the table is really the best way to help me get up there.  Those steps built-in as drawers in the table don't seem wide or deep enough to me.  Once I get on the table, I want to be able to rest my feet flat on some kind of surface because having my legs dangling off the table is very uncomfortable and hurts my low back.

Oh, and I like that curtain by the door that you can draw closed when you ask me to change into an exam gown.  So please do use it.

If the exam room is terribly small, why not reserve it for exams only and invite me into your office to chat with you?  Discussing my health concerns with you in a setting designed for conversations makes me feel like you are really interesting and engaged in my health care.

Instead, I often have to talk with you while awkwardly perched half-naked on that uncomfortable exam table or straining my neck to look sideways at you while you're gazing into a computer screen reading lab results or writing your progress note.

Having an office space that is clean and attractive, meets my needs as a patient and is conducive to quality doctor-patient interactions helps me feel better about my healthcare experience.  Plus when I am more relaxed and comfortable, I am more open and receptive to your medical advice and instructions.

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?

Hepatitis C Treatment & Little Miss Grumpy

That's me, Little Miss Grumpy.

It's official. Hepatitis C treatment has turned me into Little Miss Grumpy and today she needs to vent.

Here is the thing: I knew going into this that I could have all sorts of side-effects from treatment. I also knew that it could potentially make my other chronic conditions temporarily worse. But this was a calculated decision. I was willing to endure a short-term increase in my medical problems to gain a long-term reprieve from chronic Hepatitis C infection, the only chronic condition I have that could potentially be cured.

I just thought I would be getting more help managing the medical problems that emerged during and after treatment.

My recent experience has taught me that this isn't what happens when you go through Hepatitis C treatment at UCLA. Every appointment I'd go in with a list of side-effect and all I got back was blank stares. So I asked for help directly and I still didn't get it. The message I got over and over was my "unusual" side-effects or the impact of treatment on my pre-existing conditions wasn't my hepatology team's problem.

Even the side-effects that were clearly related to my Hep C treatment, like needing a blood transfusion because of ribavirin-related anemia, were treated like "action items" to be delegated to one of my other doctors.

So I had to go looking for help elsewhere. But since all my other doctors were looking to the hepatology team to "manage" my response to Hepatitis C treatment, they responded with uncertainty and hesitancy when I came to them asking for the help I wasn't getting.

So I went looking for new doctors, mostly specialists, to address my specific needs.

O.K., I'm not say that I regret doing Hep C treatment. I still think it was the right choice for me. What I am saying is:

• my expectations for how my Hepatitis C would be managed were definitely not met 
• this continues to be an ongoing problem for me, 2 1/2 weeks after my Hep C treatment has ended

Case in point:  I have two skin infections and one gastrointestinal issue that emerged during treatment that continue to cause me problems. I've identified and dragged myself to different specialists.  Now the treatment plans for these conditions are conflicting with each other.  Plus I know they also will make some of my other conditions worse.

Add to that the absence of a medical professional willing to coordinate my care and prioritize these issues with me.  Yup, I don't have, but desperately need, a substitute quarterback for my medical team. I'm just too sick to keep calling all the shots and making all the plays.

Don't even get me started about how much pain and suffering all these issues are causing me. Or how much of my energy I have needed to divert from resting and recovering from treatment to making new medical appointments, starting new medications and managing my burgeoning medical care.

If I think about it too much, it can become overwhelming...

Strangely enough, what really bugs me the most is that I might have given one of my skin infections to my dog Theodor. Or maybe he gave it to me while I was immune suppressed during treatment. Either way, it breaks my heart to think he is suffering too and I might have caused it!

He's got to go to the vet now, and you know what that means...more precious time, energy and money expended. I joked with my hubby that the vet will probably figure out what Theodor has and start treating it before my medical doctors figure out what is going on with me.

Maybe I should have the vet look at my skin instead.

The thing is, 24 years ago when I underwent chemotherapy for leukemia, I had a team who really took care of me, both in and out of the hospital. Silly me, I assumed I'd have a similar experience with Hepatitis C treatment. After all, with a nurse who said I could call 24/7 if I had problems and a team consisting of a doctor, nurse, nurse practitioner and administrative assistant, the hepatology team appeared able to meet my needs.

Ah, but looks can be deceiving...

Clearly cancer treatment and Hepatitis C treatment are two entirely different things, like comparing apples and lemons. The most important difference: feeling supported by my oncology team versus being labeled as a "difficult patient" by my hepatology team.

As someone who has now gone through both treatments, I think oncology has a lot to teach hepatology about how to care for patients. Unfortunately, it seems that hepatology at UCLA is not interested in learning how to do Hepatitis C treatment better. According to a hepatologist I recently consulted there, the long-term goal is to delegate Hep C treatment to primary care physicians once an antiviral cocktail with fewer side is FDA approved. He thought this would be happening in the next 2 to 3 years.

Isn't that nice. And doesn't that speak volumes about how some hepatologists view patients living with Hepatitis C?

You know, I hate to say this, but sometimes having a great patient care experience raises our expectations for our future medical care too high. Plus great care makes it so much more obvious when we get poor care. And what patient wants to get or put up with poor medical care?

But then again, not every doctor can be the best, the brightest and the top of their class, can they? Even the Hippocratic Oath doesn't guarantee that every doctor will be committed to good, solid and reliable patient care, not all or even most of the time.

Will I get through this current dilemma? Yes, of course. When will that happen? I don't know that just yet. I'm taking it one step at at time and right now I am still busy trying to get appropriate and timely care for my current medical needs.

Until I get what I need, including more rest and relaxation time, I'm afraid Little Miss Grumpy is here to stay--but just for now.  I wonder if bribing her with treats or letting her stay up late watching movies through Netflix will help her chill out? Couldn't hurt to try, right?

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?

15 Ways Hepatitis C Treatment is Kicking My Butt

In eight weeks, I've moved from the hard part of Hepatitis C treatment into the uphill climb portion of the journey.  

So today I am going to share some very personal details about the many ways Hepatitis C treatment is kicking my butt.  I do this partly to vent and partly to educate.  Think of this post as a behind-the-scenes look at what Hep C treatment is really like and then file this under TMI--as in, too much information.


For starters, I didn't know that between weeks 8 and 12, the full effects and side effects of the Hep C medications rear their ugly heads.  I'm taking three different medications, Pegasys, ribavirin and Incivek, each with its own laundry list of side effects.  Which means a whole smorgasbord of things might happen to little old me. 

That, of course, is on top of all the symptoms of my other chronic illnesses. 

So here are all the ways Hepatitis C treatment has kicked my butt so far:

1. Taste bud changes: Food just doesn't taste that same, or all that good, to me anymore.  It's making taking pills with food four times a day a real chore.
2. Nausea: I hate feeling sick to my stomach.  The worst is feeling nauseated AFTER I take my medications.  I frequently find myself praying for everything I just swallowed to stay down while I wait for the anti-nausea medication to kick in.
3. Fire-rrhea: A special kind of diarrhea, that closely resembled what happens after you ingest colonoscopy prep.  Only this is from the anti-viral drug Incivek and occurs on a random, but frequent, basis.  The fire refers to how my tush feels after the rrhea subsides...
4. Anal itching: This is the aftermath of fire-rrhea (see #4).  Also known as the itch you must not scratch, because you'll invite a whole host of nasty problems into your life if you do.
5. Pruritus: A form of whole body itching that can occurs anywhere on your body, usually in several places at a time.  That's because it's associated with your nervous system.  It can sometimes be associated with a having a rash (see #6). 
6. Rashes:  As with several other items on this list, rashes during treatment can be caused by more than one medication--in my case, Incivek and/or ribavirin.  The Incivek rash notoriously shows up between weeks 8 and 12 and can cover a large part of the body.  I just have to wait and see what happens to me...
7. Anemia: I've already talked about this side effect here and here, but perhaps what I forgot to mention is that BOTH ribavirin and Incivek can cause anemia.  Anemia gives me frequent shortness of breath, tachycardia, cold hands and feet, pale skin and a profound lack of energy.
8. Rag Doll Syndrome:  Saying I have fatigue just isn't descriptive enough.  There are literally days where I feel like I cannot move because I have no energy.  And there are many nights where, completely and utterly spent, all I can do is collapse into bed and hope that some sleep can restore me.
9. I'm Hot, I'm Cold:  No, it's not peri-menopause, it's my weekly interferon shot. That and my anemia-induced cold hands and feet.  It is making it really hard to gauge my body temperature and has led to several incidents where I have gotten overheated simply by having too many covers on my body while I am in bed.
10. Bright Lights:  Interferon is also making my eyes exquisitely sensitive to light.  This might be a consequence of the mild (and hopefully reversible) retinopathy that has developed in my eyes over the past 8 weeks.
11. Strange Noises:  For some reason, I can hear the background noises in TV shows as if they are in the foreground and it literally drives me crazy trying to figure out what is being said and by whom.  I also have developed tinnitus in my left ear, as well as occasional stuffiness in both of my ears.
12. Intra-nasal Sore:  In the really weird category, after a massive pruritus attack involving my nose, I developed a sore inside my nose.  It has literally taken over three weeks, three doctor's visits and two prescriptions for it to start healing.  It's now at about 95% healed.
13. The Sahara Desert:  Good grief!  These medications have dried out my skin, my eyes, my mouth, my finger nails and my hair.  Thankfully I have found several different over-the-counter products that help combat the dryness.  Plus I drink LOTS of clear fluids every day.
14. Dizzy Dummy:  There are so many days now when gravity is just not my friend.  For example, a trip from the living room to the kitchen can require a slow rise from sitting to standing, a slow shuffle to the kitchen and then a nice sit-down rest once I get there.  I am also using my cane and rolling walker a whole lot more these days.
15. The Water Works:  There are random moments every week, in response to ordinary things, where I am overcome with the need to cry.  Before you start thinking that I am losing it, I should tell you that this is a documented psychological side effect of the interferon.  So are crabbiness, feeling keyed-up and forgetfulness too.

Now I know these all sound terrible when compiled together into a list.  So I promise that next time I have the energy to write a blog post, I'll share with you all the ways I manage and combat these side effects.  I've got a handy dandy Hep C treatment first aid kit filled with over-the-counter items that are really helping me keep these side effects manageable. And where those items have fallen short, my doctors have stepped up and given me prescription medications to fill in the gaps.

Being prepared with home remedies in hand from the start has made a big difference in the course of my Hep C treatment.  I can't wait to share my tips and tricks with you next time.

PLEASE NOTE:  If you are thinking about Hep C treatment, know that everyone on treatment will experience some side effects.  You can't know until you start treatment how the medications will affect you.  Thankfully, most side effects are mild to moderate and the vast majority can be managed with the help of your doctor so as not to interfere with your treatment and its success.

Related articles

• Getting Through the Hard Part of Hepatitis C Treatment (ohmyachesandpains.info)
• The First Bump In the Road of My Hep C Treatment (ohmyachesandpains.info)
• Me & Hep C: I Am Part of the Next Big Epidemic (ohmyachesandpains.info)

Health Care Professionals Can Be Idiots Too

Health care professionals can be idiots too.  There, I said it. 

Yup, they can be just as stupid, ignorant and clueless as the rest of us...only their mistakes and missteps can have life-altering, and sometimes life-ending, results.  Based on this alone, I want to hold them to a higher standard. 

Only I am quickly learning that what I want to do and what I need to do are two completely different things...

No Respect for My Pre-Existing Conditions

Truth is, I don't want to have to be writing this post and letting you know that things are not going smoothly for me.  I don't want to discourage anyone living with Hepatitis C from considering their options and proceeding with treatment if that is in their best interest.

But I have a BIG problem and it is not going away.  So I need to deal with it.

My problem is that I live with multiple chronic illnesses, including diabetes, fibromyalgia, chronic pain, cancer treatment late effects and, the biggest complication of all, dysautonomia.  I have repeated these diagnoses ad nauseam--over, and over, and over--to my Hepatitis C treatment team.  They nod, they write them down, but at the end of the day they just don't get it.  They don't get that my pre-existing medical conditions are affecting my Hepatitis C treatment experience.

Won't Talk to My Other Doctors

I was warned before the start of Hep C treatment by my neurologist that ANY treatment-related anemia would make my dysautonomia symptoms worse.  At the start of treatment, when I share with the hepatologist and hepatology nurse that the neurologist prescribed Florinef, an oral steroid medication, to treat any increase in my dysautonomia symptoms, they said I could not take oral steroids during treatment.  At week two, I asked my hepatologist to call and consult with my neurologist regarding my dysautonomia because, sure enough, treatment-related anemia was making my dysautonomia symptoms much, much worse.  Shortly after my request, the hepatologist agreed I could take the Florinef.

Silly me, I thought the reversal in the hepatologist's stance was because the two doctors finally talked.  That was until I talked to the hepatology nurse a few weeks later, who commented, "I thought the Florinef was preventing anemia by saving red blood cells."  "Uh, no," I replied, "It helps my body retain salt which increases my blood volume and makes up for the loss in blood volume due to anemia."

Playing Pass the Buck

I'm also not sure why, but when I started Hepatitis C treatment, I wasn't given a consent form for treatment that listed all the goals, procedures and side effects of treatment.

That was unfortunate for me, because it meant I had no idea how my hepatology treatment team was going to handle things like anemia, low white blood cells counts, side-effects, etc.  So when things have come up--and it seems like every week something new does come up--I spent a lot of time and energy bringing my concerns to the hepatology team's attention.

From there, sometime they handle the problem and sometimes they delegate it to someone else.  Either way, it always means a lot of work for me: making phone calls, making appointments, going to doctor's visits, going to the pharmacy, asking for follow-up lab slips, asking for lab results, etc.

Sadly, when they decide to "delegate" my care, it has the flavor of dumping me onto another medical service that might or might not be able to help me.

For example, hepatology tried to delegate my blood transfusion arrangements to my primary care doctor.  Only I found out my doctor was out-of-town at the time and the doctor covering for her informed me that the Family Health Clinic didn't have a way to expedite a request for an outpatient blood transfusion.  So I had to call the hepatology nurse back, let her know my primary care doc was out of town and that hepatology needed to make the blood transfusion arrangements.  The end result?  I got sent to the Emergency Room instead of the outpatient cancer center (where it turns out I would have gotten better patient care.)

The Laissez Faire Approach

I have been pushing hard to have my blood counts monitored on a weekly basis while they have been in flux.  After all, I figured if the hepatology staff had the numbers in front of them, they could be proactive in treating these side-effects.  Especially since I told them that anemia would make my dysautonomia worse...

Boy, was I wrong.

On top of that, I have to listen to the hepatology nurse constantly telling me I don't need to have my labs drawn every week.  My best guess at what that really means?  She is too busy/absent-minded/lazy to be checking my labs on a weekly basis and following up with the doctor when action is needed.

I don't agree with her.  So I ask for a lab slip and then call her weekly to ask her to check my results. 

My latest dilemma?  I just had labs drawn Tuesday, April 10th.  Based on those labs, my hemoglobin has once again dropped, from 9.8 to 9.1, in 7 days.  (The critical level is 8.5.)  But the hepatology nurse made it a point to tell me she doesn't think I need to go back to the lab this weekend and have another level drawn before my doctor's appointment on April 17th.  No, instead, if I did things her way, I would talk to the hepatologist about further side-effect management decisions, like a ribavirin dose reduction, blood transfusion or start of erythropoietin therapy, based on week-old hemoglobin results.

Of course that left me asking myself How does this make any sense?!?

Today I sent out an email to my primary care doc asking her to fax me a lab slip so I can get the level rechecked closer to my upcoming Tuesday appointment.  That way, I can get the hepatologist and his nurse practitioner to make any necessary arrangement during my clinic appointment for a blood transfusion or a prescription for erythropoietin based on real-time lab results.

I am happy to report got the lab slip a few hours later and I am good to go back to the lab this weekend.

I'm One Frustrated Patient

I am so frustrated about this ongoing situation.  I would LOVE to transfer my care to another hepatology nurse, only there isn't another one in the practice.  So all I can do is deal with my anger in productive ways by being the best damn patient advocate for myself that I can be.   Because, well, my life really does depend on it right now.

I can also list all the things that really irk me about my current hepatology health care providers.  Maybe you can relate to this list too.  After all, can you really trust health care providers who:

• don't listen to their patients or ask them questions
• don't look up information on the conditions their patients' have
• don't read up on the medications their patients take
• don't or won't take responsibility for their patients' care and well-being
• don't or won't work with other health care providers as a team
• don't communicate with patients by email
• won't be proactive about the management of their patients health problems

That said, rest assured I am not going to let my Hepatitis C treatment providers injure or kill me. No way, no how--it's not going to happen. That's because I have a health care team that I can fall back on and ask for their help when I don't agree with how my Hepatitis C treatment is being managed.

Yes, today I am thankful I have other health professionals I can rely on for my care.  In particular, thank goodness for my primary care doctor! I think I am going to owe her a huge debt of gratitude when all is said and done.  What do you think?  Should get her a present?  If so, what should I get her?

Still hanging in there and taking it day by day...even on Friday the 13th!

Wow, could I really use your support!
I've got 120 days of Hepatitis C left
and sometimes that seems like such a long time...  

Learn how you can support me here.

Related articles

• The First Bump In the Road of My Hep C Treatment (ohmyachesandpains.info)
• Getting Through the Hard Part of Hepatitis C Treatment (ohmyachesandpains.info)
• My Hep C Treatment: A Pit Stop at the Emergency Room (ohmyachesandpains.info)

Me & Hep C: Week One of Treatment Completed

It's time to celebrate!

Week one of Hepatitis C treatment has come to an end...only 23 more weeks to go.

As someone much wiser than me once said, "A journey of a thousand miles begins with a single step." Well today I have finished 7 of the 168 days of my Hep C treatment journey.

To prove to you all that I am doing OK, (or that I am just a really good actress, LOL!) I recorded this video to mark the occasion:

Video Transcript

Hi, this is Selena from the blog Oh My Aches and Pains!  And I have just completed, with your help, week one of my hepatitis C treatment. 

I could not have done this without you guys, with all of my Selena's Hep C Treatment Supporters.  You guys are the best with your messages, your (Facebook) wall posts, your "Likes", your tweets,  your comments, your e-mails.  You guys are really helping me to keep my spirits up and keep me focused on my goal here which is to beat Hepatitis C. 

If you haven't already headed over to SignUp Genius and signed up for a support mission, hey head over there now.  I've got 24, no 23 more weeks of this treatment to go, so I can use all the support I can get!  And if SignUp Genius doesn't work for you, hey that's cool; do whatever works for you.  Just keep those messages coming and I can't tell you how much they mean to me.

Now I do want to let you guys know that I have already had some side effects this week, but so far everything has been manageable. 

I've also been dealing with a little bit of stress with my healthcare providers, trying to getting them to listen to me and incorporate some of my needs into the treatment protocol.  I found out before I started treatment that we really have to watch my red blood cell count closely because if I get anemic from treatment it's going to make my dysautonomia worse.  And dysautonomia is what got me into trouble last time I tried the Hepatitis C treatment and it made me have to stop the treatment after three weeks.

You know, this has kind of involved calling some of my other healthcare providers, not the liver people, to get them involved.  And I also made a choice to call Patient Relations when I felt like hepatology folks weren't really listening to me.  You know I was a little apprehensive about doing it, but what has come out of that is an appointment Tuesday with my doctor (and) with the hepatology nurse. 

And I'm feeling a little more confident today that if we get to sit down and talk, like we are going to be able to, that we can figure this out and come up with a plan, involve more of my other treatment providers if that's appropriate, and then we can kind of just move forward.

My whole big thing is that I want us to be prepared and they want us to try to catch things early if I'm going to have side effects so that they don't become big deals.  So I'm hoping this approach will work and obviously I will let you guys know (the outcome.)

Again I want to thank you so much for all of your support and I can't tell you how much I appreciate it.  And so now I've got to get my act together and start making some of those cool giveaways for my end of Hep C treatment party I promised you guys.  So, keep sending the support, I am going to keep putting your names into the raffle for the end of treatment party.  I will also share with you as the weeks go on, some of things I'm going to make, the cool kind of give away things.  I think you guys are going to like them.

But anyway, I just wanted to let you know that I'm here and I'm doing okay.  And thank you, thank you, thank you!  And I think that's it for now.  So take care everybody and have a great weekend and I will talk you again soon.

This is Selena from the blog Oh My Aches and Pains!  One week down, 23 to go.  Woo hoo!

Want to make a BIG difference
by doing something super quick and easy?  

Support me during the 168 161 days
of my Hepatitis C treatment!  

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Related articles

• Can You Help Me Get Through Hep C Treatment? (ohmyachesandpains.info)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

Does Your Doctor Owe You a Good Break-up?

On Valentine's Day, this sick chick I can't help but reflect on the number of doctor-patient relationships that I am currently managing.  In fact, I took a moment to jot them all down and I discovered that I am currently seeing 10 doctors.  Wow, that sure seems like a lot of doctors!

My Doctor-Patient Relationships

Now don't get me wrong.  Some of my doctors are great and I truly enjoy working with them to tackle my chronic health problems.  Others are so-so, and at the moment, I am settling for their care until I have the time, energy and ability to search for another doctor that is a better fit for me.

Then there are two doctors that are causing me some real problems right now.  Over the past 12 months, two key doctors in my medical team have suddenly and abruptly "broken up" with me.

My Recent Bad Break Ups

At the beginning of 2011, my cardiologist literally vanished.  I found out she was gone when I called to make a follow-up appointment.  The first support staff member I spoke with simply had no idea what happened to her.  When I was transferred to someone who did know, I was told she was on a sabbatical to finish writing a book.  When I called back several months later, I was told she switched to seeing hospitalized patients only.

Whatever the reason for her absence, she neglected to make arrangements with another physician to take over her patient load and to send out a letter explaining she would no longer be seeing her patients.

My pain management doctor is my most recent bad break up.  I started calling at the end of December to schedule a follow-up appointment and finally got a call back January 10th.  Her staff left a message saying she moved to Fresno and gave me the number to call for an appointment.

Needless to say, a four hour drive so I can continue to see her in-person is so not doable. And finding someone to replace her is turning into a real nightmare.

I have called her office back several times trying to get some referrals from her.  On February 10th I finally got faxed to me the letter she allegedly sent out to all her patients--except me of course--which is dated November 14, 2011.  In it she explained her move, provided a referral list to other doctors and gave a consent form to use to obtain her medical records.  Only the fax I got didn't include those two attachments. When I called back asking for these items, I was told by the staff that they were waiting for the doctor to give these things to them.

She also stated in her letter that she could continue following established patients via telephone and email from her new location.  Wanting to explore this option further, I called both this past Friday and Monday requesting a registration packet and a telephone appointment.  I've been put into voicemail both times that I have called and I am still waiting for a call back.

I also sent the doctor an email, but so far I have received no response.

Not What the Doctor Ordered

While I guess I could dismiss these incidents as just two more examples of how the medical system is broken, the reality is that these actions are both unethical and illegal according to the American Medical Association website.  Unbeknownst to me, they are examples of "patient abandonment."  And according to the Medical Board of California, patient abandonment is a good reason to file a complaint against a medical provider.

I've gone on to learn that, due to their unique and powerful role on our society, doctors are tasked with a special duty of beneficence.  That is a fancy way of saying that they must take actions that are in the best interests of their patients.  What this means in my situation is that my doctors were obligated to give me adequate time to transition to another health care provider and facilitate this transition by providing me with referrals and access to my medical records.

Clearly this is not what has happened.

Now that I know this medical-legal lingo and what it means, I am going to use it in my correspondence with my pain management doctor in an attempt to get her to respond to me in an appropriate fashion.  If that doesn't work, then I will seriously consider filing a complaint with the medical board.  Why?  Because her actions have truly caused a delay in my medical treatment and, at this point, she and her staff are creating unnecessary roadblocks to my ongoing medical care.

Why You Need to Act on This Too

I share this information with you, my readers, because I want you to be informed and consider doing things differently should your doctor ever dump you.  I want to be clear that this isn't about doctors being inconsiderate; it's about doctors breaking the covenant they have with their patients.

Obviously trying to work things out through good communication with your doctor and their staff is your first line of action.  But if that doesn't yield results that are in your best interest, it is time to consider other measures.  

A complaint to a medical licensing board is one of the few tools we patients have to keep our medical providers accountable.  It ensures doctors are fulfilling their ethical and legal obligations as physicians, a career they choose to practice.  It also provides important feedback to medical boards about the conduct of their licensees and identifies areas where continuing medical education is vitally needed.

Most of all, making a complaint empowers you as a patient.  It sends a message that you are not going to put up with bad behavior from your doctor.

So now that you know your doctor's obligations to you, what are your thoughts?  Have you gone through a bad break up with a doctor?  Armed with the information above, how would you handle this situation should it ever happen to you?  How do you feel about holding your doctor accountable?

Can Money Buy You Good Health?

They say that money can't buy you love or happiness, but I am beginning to think that it might actually be able to buy you good health, or at least better health if you live with chronic illness.

I know nowadays there is a lot of talk about the uninsured and those with health insurance.  Correspondingly, you hear a lot about the two different health care systems serving these groups: the publicly funded health care system (think county hospitals and clinics) and the insurance funded health care system (think doctors in private practice, medical centers, etc.)

Having medical insurance and chronic illness, I've spent a good portion of my time and energy access care in the insurance funded health care system over the past eight years.  I've learned a lot of things about how this system care works, enough to write a whole series of blog post.  But perhaps my most perplexing discovery is that there is actually a third health care system that doesn't get a lot of attention, that of the cash-only or self-pay medical practice.

As the name implies, these are physicians and other health care professionals charge up front for their services.  So if you can't pay (or charge the bill to your credit card) you can't be seen.  They don't accept your insurance--in fact many don't belong to insurance networks and have opted-out of Medicaid and Medicare. Most will provide you with a superbill so you can submit their charges to your insurance company, but since their rates are usually above and beyond what your insurance carrier considers "reasonable and customary," you will only be reimbursed for a fraction of what you paid them.

So, in essence, this third health care system is for those who have money, lots and lots of money.

I don't have lots and lots of money, so in the past, whenever I have stumbled upon one of these medical practices, I have steered clear and not given them a second thought.  Which is all well and good except that, as time has gone on and the insurance driven medical system has failed to provide me with adequate care for my chronic illnesses, I now am getting referred to this third system of care because its members provide the services I am seeking.  In this system reside the experts in things like pain management, rare diseases and disorders and novel and cutting edge treatments that pick up where conventional approaches fall short. 

Yes, it seems that here in Los Angeles many of the doctors who are at the top of their fields convert to this kind of practice.

Now I find myself wishing I had the money, the golden ticket, to access this third level of care.  I'm drawn by the allure of better treatment that could potentially make a significant difference in my quality of life.  Granted, I don't think they could cure me, but from what I have heard, it seems like these upper echelon providers could reduce my chronic illness burden and help me regain some of the day-to-day functioning I have lost along the way. 

With all the hype, I have to wonder, 'Could being treated by one of these cash-only healthcare providers be the difference between living disabled and living more able-bodied?'

Unless I win the lottery or become the recipient of some fortune from a deceased distant relative, I guess I will never know.

So what do you think?  Can money buy you good health?  What is your opinion of cash-only or self-pay medical practices?  Are you able to access this top tier medical system or is the admission price preventing you from getting the kind of medical care they provide?  

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