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.