Getting to Know Me, All Over Again, After Hepatitis C Treatment

While distractions might have gotten me through 2013, they also pleasantly postponed me from diving into the new personal health management work I need to tackle.

You see, I reached a new low point with my health last year.  Hepatitis C treatment in 2012 really took a toll, in expected and unexpected ways.  It's been over 16 months since it ended and I finally feel like I have a handle all the challenges treatment presented. 

The anemia-induced exacerbation of my dysautonomia symptoms resolved and my extreme sensitivity to the sun disappeared in about 3 months.  The extreme fatigue and overall weakness got gradually better with each month that passed too.  Within a year's time, I was pretty much back to my "usual" level of chronic illness related fatigue.  Oh, and a sore that developed during treatment finally fully healed at the 15 month post-treatment mark. 

Now I just need to conquer the small intestinal bacterial overgrowth (SIBO) in my gut to get back to my pre-treatment self.  Oh, and get a handle on new problem: high cholesterol.  That was a surprise.  Seems the only good thing about having chronic Hep C infection is that the virus keeps your cholesterol low because it uses the fats in your body during its viral replication process.

As for my diabetes, there's been no dramatic improvement in my insulin resistance or glucose control since beating the virus.  And in regards to my fibromyalgia and chronic pain, there's been no improvement there either.  I am disappointed on both accounts.  However, I did some more research when I didn't get the outcomes I wanted and I remain convinced that my 24 year long chronic Hep C infection played a role in the appearance of these two conditions.

I read an article by Dr. Mark Borigini, a rheumatologist at the National Institutes of Health, and learned that Hep C can flip a (metaphorical) switch and trigger fibromyalgia symptoms.  However, it appears that when the virus leaves, it doesn't turn the switch off on its way out the door.

The same is true for type 2 diabetes.  Science Daily reported back in 2010 that Hep C flips yet another (metaphorical) switch and causes people with a genetic predisposition for type 2 diabetes to develop this condition decades before their family members do.  My paternal grandfather developed type 2 diabetes is his 70's; I developed it at age 33.

Darn inconsiderate Hep C virus, causing damage and not cleaning up after itself on its way out of my body!

Want some good news? A repeat viral load test in October 2013 showed I was still undetectable, which IS good for me in the long run.  According to a new study from Taiwan, having Hep C increases the changes of complications from type 2 diabetes.  Successful treatment of Hep C infection in persons with type 2 diabetes reduced the risk of kidney disease, stroke and cardiovascular disease by roughly 50%. 

So successful treatment helped me dodge some potential future health problems.  I am grateful for that.  And I am sure as time progresses, science will catch up and learn more about what Hep C really does to a person's body, and I will be grateful for avoiding those long-term consequences too. 

In the meantime, I need to get focused on the present and finish my recovery -- from both treatment and 24 years of having my body hijacked and turned into a viral replication factory.  It's been 16 months since treatment ended and the truth is this recovery process isn't over for me yet.  Much like when I completed my cancer treatment 25 years ago, I now need to learn to live in a body that isn't quite the same as it was 22 months...and that is going to take some time. 

2014 is the year I will really start getting to know what my body is like without Hepatitis C.

Did It Work? The Results of My Hepatitis C Treatment

This is me. Watch the video clip below
to learn if I'm now Hep C free.

VIDEO TRANSCRIPT

Hi, it's Selena from the blog Oh My Aches and Pains! and I'm recording this message today because I have arrived the end of my Hepatitis C treatment journey.

I'm here today to share with you the results of my six month post-treatment Hepatitis C viral load. So drumroll please! I remain undetectable; the Hepatitis C virus cannot be found in my bloodstream. The treatment that I underwent was successful and I am currently Hepatitis C free.

Now part of me is ecstatic about this news, and part of me, I think, is dealing with a little bit of disbelief. I mean I have lived with Hepatitis C for 24 years so it's a little surreal to think that that, moving forward, I'm no longer dealing with a life with Hepatitis C. Now it might take a little bit of getting used to, but I think eventually I'll managed just fine.

I do need to let you know that there is a 0.8% chance that the virus could come back. Again, that is 0.8 percent, but I think you'll agree that chance is very small, tiny, miniscule. In fact, it's so small that there is a group of people in the medical community now, who considered an undetectable viral load at six month post-treatment a cure. Hey, I can deal with a cure!

I also have other good news to report. When I got my viral load test drawn, I also got an A1C test done, which is a test you do when you have diabetes. A normal test result is 5.9 or lower for people who aren't diabetic. My has resulted was 6.3 which is pretty darn good, especially considering how much Hepatitis C interfered with my ability to manage my diabetes. I've been living in 7+ range for quite a while now.

Every day I'm getting a little bit stronger and doing a little bit better. I'm still not back to my pre-treatment level of functioning, but I'm definitely better, much better, then I was six months ago. It might take another six month, or it could take up to two years post-treatment, for me to finally start feeling like I did before I started treatment.

In terms of my chronic pain and my chronic fatigue, unfortunately I haven't experienced any improvement in those symptoms. Maybe it's too early to tell…and it's possible Hepatitis C really didn't have much to do with those symptoms.

But either way, treating Hepatitis C was the right decision for me and I have now eliminated any possibility of developing any Hepatitis C related complications. And that's a good thing!

So now that my journey has ended and I've gotten a good outcome, it's time to celebrate! And since many of you who have been supporting me through this journey are online with me, we're going to have the party online. I'd like to do a Google hangout where we can all join in on a video chat. I'm putting together some party favors for those who are attending as well as some giveaways like I promised.

I just need a little bit of time to get everything together and then we can celebrate!

So if you're watching this, you're invited. Look for more information on my blog or on Facebook about actual day and time.

And once again I want to thank every one you who has reached out to me to offer me support during this journey. It has really helped me get where I am today. And I'm very honest when I say I couldn't have done this without your support. And now it's time for me to pay you back. So if you need my help, you know how to find me. Please don't hesitate to ask – I'm here to return the favor.

This has been Selena from the blog Oh My Aches and Pains! and I am now living life Hepatitis C free.

The Final Steps in My Hepatitis C Treatment Journey

I'm nervous.  Or is it anxious?  Either way I am out-of-sorts and, quite frankly, I just want the next 10 days to fly by as quickly as possible.

You see, I go for my six month post Hepatitis C treatment blood work this weekend and apparently I am all freaked out about it.

This is the big one.  These are the lab results that tell me whether or not the treatment I got worked.  When I get the results, I learn if I have achieved something called SVR, which stands for "sustained virological response."  With the new antiviral drugs, like the drug Incivek that I took, the medical community to starting to consider SVR as the marker for a "cure."

Now that's pretty heady stuff.

I don't expect bad news.  My three month post-treatment viral load came back undetectable.  Since that test is a good predictor of the six month post-treatment results, I expect that this next result will be undetectable too.

But I don't want to take anything for granted.

It's weird when you live with a chronic, active infection for 25 years.  Hepatitis C became part of who I was in a lot of ways I hadn't really considered until recently.  Not that I want to keep living with it--no way, no how!

I don't want to be contemplating the worse case scenario either.  You all know that treatment was really difficult for me and I certainly do not want all my efforts to be in vain.  I can't even think about having to do it again without feeling massively discouraged.

Becoming Hepatitis C free is such a HUGE deal...and I really want this so badly.

My body knows this is a big deal and I can feel it responding to my anxiety by overreacting.  This is nothing new to me.  My dysfunctional brain goes into overload mode in the presence of any ongoing stimulation, be it good news or bad.  That translates into increased insomnia, sensory overload, worsening symptoms, tachycardia and general grumpiness, physically, mentally and emotionally.  Which is really just another day living with the ups and downs chronic illness.

Which leads me to the next thing I want to share with you today...

I really want to be able to say to you that, since Hep C treatment ended, I have seen improvements in my health now that my viral load is undetectable.  That just hasn't happened yet, and frankly, I'm a little concerned that it isn't going to happen either.

Honestly, given how much hope for improvement several of my medical providers pinned on a successful treatment outcome, I feel tremendously let down.

I still live with chronic, debilitating pain.  In fact, I have more pain now than when I was on treatment.  Weird, huh?  I'm not exactly sure what that means, but I do know that at one time low dose interferon was considered a treatment for fibromyalgia.  

I still deal with chronic, energy-sapping fatigue.  Not sure if that just means my body needs more time to heal from treatment or if Hep C wasn't the cause of my fatigue.

My blood sugar is better, but I still have type 2 diabetes and probably will for the rest of my life.

Plus I've learned some disappointing information.  Seems Hep C can trigger things like fibromyalgia since the little buggers can get into your brain.  They turn on a switch that makes things like chemical reactions and neurally-mediated pathways go all wonky.  Unfortunately, getting rid of Hep C virus doesn't flip the switch off according to rheumatologist Mark Borigini, M.D in an article over at Psychology Today.  Rude little buggers didn't turn the lights off when they vacated the premises!

And I am still dealing with three treatment-related complications that need continuing medical attention.  Quite frankly, I am getting quite annoyed with these linger health issues and I am ready to switch doctors yet again in an attempt to get these problems resolved once and for all.

Oh, and I am having a hard time getting a follow-up appointment with my new internal medicine doctor.  She's the one giving me the the results of the lab work I am having drawn this weekend.  A scheduling snafu is one more aggravation I don't need right now.

Thankfully I do have another doctor (actually her nurse) who I can email and ask for the results.  Because I would hate to have to wait, and wait, and wait to get these lab results.  Any delay is going to make me want to tear out my newly grown-in hair.

Huh.  I guess I really do have a lot of reasons to be feeling stressed out and short-tempered lately.

I need chocolate and lots of hugs and kisses.  Good thing Valentine's Day is next week, which gives me the perfect opportunity to request increased quantities of all of these.  Thank goodness I have folks in my life who can give me chocolate, hugs and kisses.  So I guess my life isn't that terrible after all.

I'll let you know the outcome of my Hep C treatment soon.  (In the meantime, excuse my typos and incoherence due to sleep deprivation.)

Ready to See Where Life With Chronic Illness Will Take You in 2013?

Wow, time sure does fly!  I can't believe that 2012 is over already.  Really.  I feel like I got so little done and missed out on a lot of things last year because of Hepatitis C treatment.

I am so looking forward to this new year and:

Health Stuff

• fully recovering from Hep C treatment aka chemotherapy #2
• getting the final results of my Hep C treatment in February
• seeing what health issues and limitations I am left with once I am Hep C free

Life Stuff

• getting more things done at home--nine months of neglect and my house is a disaster!
• getting out of the house more often
• returning to a regular schedule of blogging and writing
• heading back out to my container garden and sharing my adventures at The Seated Gardener
• seeing if I can turn my hobbies into an Etsy empire

Now this is going to be a process, like going on a trip.  I start where I am today, point A, and keep moving forward, for the most part.  I don't really have a destination, at least not one I am 100% sure I can reach, so I'm traveling by Zen navigation this year.  I wonder where I will find myself by the end of the year!

As with every trip, there are road signs, traffic lights and rest stops along the way.  Here are the ones I am going to pay extra special attention to:

• The green light:  Every day I am inching closer to my previous level of functioning, around a 30 out of 100, which IS something to celebrate.  Yippee!
• The yellow light:  This is a delicate balance, finding my new baseline. So I have given myself a generous 6 months more of recovery time, plus or minus another 6 months!
• The red light:  We all know how easy it is to over-do things and wind up paying big time for pushing our limits too hard, too fast and/or too frequently. So I need to be CAREFUL and keep using the coping skills that have served me the best: planning, pacing, resting, saying no and having some fun every day.  

You can tell that this sick chick has learned some lessons from 8 years of life with disabling chronic illnesses...

To tame my enthusiasm and avoid getting myself into trouble, i.e. more pain, fatigue and flare-ups, I'm using some new tools this year:

1)  Evernote: this is a cloud-based note-taking and file-organizing program that I can access on my computer, Kindle and Andriod phone.  I use it two ways: for my blogging/writing (posts, ideas and book chapters) and for collecting and storing items of interest and inspiration I find online.  While using it on a computer, you can clip almost anything to Evernote, from a recipe, crochet pattern or photo to an entire article or blog post. You can also attach voice notes and files to your notes.  Plus check out Clearly for reading webpages much more easily.

Evernote has helped organize my thoughts and ideas into one place, and it's a place where nothing ever gets lost!  Plus my stuff can be read, searched and accessed from almost anywhere, which is part of the Evernote philosophy: my data is mine, it is protected and it's portable.

2) Astrid: since I have been ill, I've avoided using traditional "to-do" lists because, well, they make me feel like crap when I fail to accomplish my tasks and goals.  But Astrid takes the list to a whole new level, one where this funny little red octopus gives you gentle reminders and sweetly encourages you to get things done.  Plus Astrid wants you to make all kind of lists, like books to read and movies to see...you know, fun stuff.  And she gives you the option to delegate a task to someone else (yes!) by sending it to one of you contacts.  Watch out, hubby!

I have been using Astrid to facilitate my famous "brain dumps"  and get a handle on all the things I want to do now that I have more energy to actually think about and do things.  Now I just need to be practical and reasonable by setting very generous due dates on the things I choose to work on and letting most other things sit for just a while or two longer.

So what about you?  Are you ready to hit the road and see where 2013 takes you?  What road signs are you going to be heeding more closely this year? What companions are coming along with you that will make your trip easier?  I'd love to hear about your plans, so leave me a comment.

Selena's 2012 Holiday Message

Video Transcript

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Her response was an enthusiastic "Yes!"

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

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

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

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

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

Silver Stethoscope Award

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

What Are the WEGO Health Activist Awards?

From the WEGO Health website:

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

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

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

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

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

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

Sometimes the Health Care System Fails Us

The California Medical Association says:

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

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

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

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

Sometimes We Really Need Help

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

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

Sometimes Conflicts Arise with Our Health Care Providers

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

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

Sometimes Even Patient Advocates Fail Us

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

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

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

This is what I thought would happen next:

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

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

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

Sometime We Just Need to File a Grievance

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

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

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

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

Resources

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


Related articles 

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

HEALTHWISE: Hepatitis C Treatment Tips from Patients

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

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

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

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

I hope you find this article and its resources helpful.

---

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

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

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


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


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


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


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


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


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


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


Here are some more tips: 

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

Nutrition and 20 Grams of Fat Diet 


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


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


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


Digestion and Anal Issues


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


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


Skin Issues


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


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

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

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

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

Psychosocial Issues 

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

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

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

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

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

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

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

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

Yes, the cure rates make it all worth it. 

More Information

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

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

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

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?

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.

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

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

The story of my Hepatitis C treatment continues...

A Mad Dash for a Second Opinions

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

My first thought was How crazy is this?

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

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

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

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

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

Santa Monica-UCLA Medical Center: Part One

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

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

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

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

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

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

Part Two

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

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

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

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

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

But Then Comes the Kicker...

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

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

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

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

Another Week, Another Second Opinion

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

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

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

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

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

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

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

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

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

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

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

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

That Brings Me to Today...

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

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

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

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

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

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

How My Hepatitis C Treatment at UCLA Went the Wrong Way

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

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

Talk about pressure!

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

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

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

Discovering a Big Mistake at Week 20

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

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

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

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

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

A Bad Doctor-Nurse-Patient Relationship

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

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

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

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

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

The Story of My Missing Week 4 Viral Load

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

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

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

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

But no, that conversation never happened.

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

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

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

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

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

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

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

My Doctor's Decision

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

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

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

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

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

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

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

Lies, Lies, Lies

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

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

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

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

Where That Left Me

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

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

Related articles

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