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Tuesday, August 28, 2012

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?


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Friday, August 10, 2012

Arriving at the End of My Hepatitis C Treatment Journey

As I am publishing this post, I am in the car headed to the lab to get blood drawn for my week 24, end of Hepatitis C treatment, viral load.

Robert will be driving. I will sitting in the back seat of the car. That's because the interferon I have been taking for the last 24 weeks has made me so sensitive to sun I absolutely need the darker tint on the back windows to keep me safe. It will be the hottest day yet this year today here in Los Angeles and the sun and heat are not my friends right now.

Because I am so wiped out from treatment, this trip will be more like an jungle expedition, complete with white knuckle moments when short stops, crazy drivers hurtling towards us and the occasional obscenity uttered by my husband in response to the road conditions will rattle my nerves. I will have to reassure myself over and over again that I can get through this and get back home, safe, sound and in one piece.

My heart will be pounding. I will be dizzy. I'll need to take my time moving from sitting to standing and vice versa. You see, my dysautonomia has been worse from the treatment-related anemia since week 2 and it is probably going to take up to 60 days for the anemia to get better, *fingers-crossed.*

When I get to the UCLA Medical Center, I'll be using my rollator, a.k.a rolling walker, to get the short distance from the car to the lab and back. I need to rely on it because of my fatigue and dizziness. It also doubles as a purse carrier, which is a good thing since my purse feels like it weighs 2 tons right now. My rollator also gives me a place to sit while I wait in line at the lab counter to turn in my lab slip. After the blood draw, it helps keep me on my feet when the post blood-letting wooziness hits as I make my way back to the car.

It's never a dull moment when you live with chronic illness!

Yes I'm battered from this treatment. Some days I am barely functional. But I knew going into this with multiple chronic illnesses in addition to Hepatitis C that treatment could take a huge toll on me and greatly reduce my level of function.

How beat up am I? Let me quantify it using the CFIDS/FM Self Help rating scale. On the scale, one hundred is normal functioning with no symptoms and zero is bedridden and unable to care for myself. I am a solid 10 right now. Before treatment I was a 30 and boy do I miss being there.

So why did I embark on this trek? Because Hepatitis C was the only chronic condition I was living with that could be potentially cured. And since chronic Hepatitis C infection is associated with  arthritis, fatigue, fibromyalgia, insulin resistance, type 2 diabetes and peripheral neuropathy, all conditions I have been diagnosed with, it just made sense to try and take it out of the mix as soon as possible.

Now that I have arrived at my destination, the end of my treatment, I just have to wait and see where I have landed. Only time will tell if I have slayed the dragon Hepatitis C and if its absence makes a difference in my health and my quality of life.

That said, I think this 168 day battle was still worth it, even if I don't achieve a SVR (sustained virological response.) That's research talk for the absence of Hepatitis C RNA in my blood 6 months after treatment ends. Even if the virus comes back, at the very least, treatment should reset the clock on my chronic infection, dialing it back down so my inflammation, viral activity and any liver damage gets better in the short run. That's time I'll need if I have to wait for newer antiviral drugs currently in the Hepatitis C research pipeline that are crawling towards FDA approval.

As with every trip you take, there are bound to be some bumps and potholes in the road. As you know, my treatment has run into its fair share of them, from severe anemia by week 4, the discovery at week 20 that my hepatology team failed to get a week 4 viral load needed to determine my treatment length and, of course, lots and lots of side effects throughout the last 24 weeks.

As I move on and leave these troubles behind me, my greatest disappointment looking back is not getting to do my treatment the right way; that is, per the treatment protocol. When I started treatment, I was physically, mentally and emotionally prepared to give this 100%. And I was as close as humanly possible to perfect as I could! I took my pills on time, up to three times a day, for 168 days. I gave myself 24 weekly injections of interferon. My husband took me to so many lab and clinic appointments in the past 24 weeks that I have simply lost count.

At the start, I didn't think my expectations that my hepatology team would closely follow the treatment protocol were unreasonable. But now that I am at the finish line, arriving labeled as a "difficult patient" by the UCLA Health System, I can clearly see the disparity in the level of commitment between them and myself.

After the discovery of my missing week 4 viral load, my gut wanted to go conservative. So I advocated for extending my treatment from 24 to 48 weeks. But I was quickly and summarily overruled by my doctor. I'm still not happy there is an extra element of risk that has been added to my Hepatitis C treatment, that what I wanted wasn't considered when my doctor made his treatment plan.  But it is what it is and now it can't be changed.

Today I know my determination and complete commitment to my Hepatitis C treatment is what got me here to the finish line. It helped me get over the bumps, out of the potholes and through the rough patches.

There were times though when I wasn't always strong enough by myself.  In those moments when I was faltering, it was you and your abundant support that lifted me up and carried me forward.

In this age of social media, I invited my family, friends and supporters on Twitter, Facebook and here at my blog to go on this odyssey with me.  Your response was simply amazing. All of you, reach out to me through the Internet, brilliantly made up for the lack of support from my hepatology team. I don't know where I would be today without you.

When I am feeling recovered, I plan to pay it forward, to repay you as best I can and be there for you when you need someone the most. I also have an end-of-treatment party to plan and throw for you all, complete with a giveaway raffle! Yes, it's time for a great big celebration of what I was able to accomplish with your help.

So here I am, Day One post-treatment.  In the next 24 weeks I will learn where treatment has brought me.  In the meantime I continue to be grateful for your company on this last leg of my journey.  Let's all think lots of wonderful healing thoughts for each other today and pray my days living with Hepatitis C have come to an end.



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Wednesday, August 8, 2012

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?



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Wednesday, August 1, 2012

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.



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