Day 126, Old Friend Back Again

Yesterday morning I awoke to an all too familiar sensation in my neck, throat and head. It's the same symptoms I've had twice before and I feel the recurrence of these episodes aren't allergy related at all. They are side effects from taking Ribavirin and Sovaldi. So I got the idea to revisit the long list of side effects of just Ribavirin alone, and when compared to my symptoms versus what the drug can cause, the conclusion was obvious. I Googled "Ribavirin Side Effects" and the first result was from MayoClinic.com. Within the list of over 100 side effects posted, here's the ones that stood out most: body aches, congestion, cough or hoarseness, dryness of the throat, fever or chills, general feeling of discomfort or illness, headache, irritability, brain fog, poor concentration, rapidly changing moods, quick to react or overreact emotionally, restlessness, lack of sleep, runny nose, sore throat, swollen glands under the neck, sores on the lips or in the mouth, trouble with concentrating, trouble with swallowing, dry skin, heartburn, lethargy and stuffy nose. Pretty incredible when looking back retrospectively on my symptoms versus the drug's side effects.

Thankfully, this Thursday at 2:15PM, I have a follow-up appointment with my treatment doctor, and I plan to go over all of these occurrences with her. I know it's going to be one of those cases that I'll have to tough through it regardless, and there will be no relief until therapy has ended. I've had to visit the Emergency Room three times since April 16th from my mini-vacation to Atlanta, GA. What I presumed was a mere allergy related matter, and now with the refresh of looking at Ribavirin's side effects, I'm second guessing this entire sinus infection prognosis and leaning more towards the medication. I went to Walgreen's yesterday and picked up some Emergen-C with Immune Boost to help get me through the next couple of days. I'm going to do everything in my power to not visit the ER again, and just tough through it as I approach the final 41 days of treatment as of today. 

I'll be sure to keep all my friends, fellow dragon slayers and church family up to speed on my progress as we rapidly approach the countdown to the final 30 days. Please continue to pray for me as we can now finally see the home stretch of this 6 month journey to get cured of Hepatitis C once and for all! Before I go, I wanted to share a scripture from the book of Romans with you that has helped me get through the past week. The reminder of God's unconditional love sometimes is all the motivation I need to keep Striving to Keep Thriving. Please 

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39 NIV

Day 118, HCV Then & Now

It's hard to believe that I'm already one full week into bottle five and month 5 of my liver treatment. I'm so close to the finish line I can just begin to see the lights from the finish line. I'll be completely honest, this treatment has been the best blessing and breath of fresh air I've had in my entire life while taking treatments and therapies. In 2006, as some of you know from my past blogs, I treated with the toxic combination of PEG-Interferon and Ribavirin, and faced a plethora of side effects. I lost close to 10 pounds, had blood in my stool, developed a dry peeling facial irritation, my bones ached and hurt the entire duration of that 6 months, and I was constantly sick. Sadly, I didn't even go undetected until very late in therapy of those 24 weeks, only to suddenly relapse just 3 weeks later. The disappointment, pain, depression and a sense of being defeated clouded my mind for months after that.

First and Foremost I'm not a spokesperson for any drug company, nor endorsed, nor given brownie points for mentioning the names of these drugs. But I'm here to tell you treating on Sovaldi has been an amazing ride. As I approach my final month in a couple weeks, looking back retrospectively, I've concluded that this treatment has truly been a Godsend. I've had very mild side effects like headaches, lethargy and moments of brain fog, but everything is so easily manageable with over the counter medications like Tylenol, Advil or Alieve. I've had no skin irritations, no bloody stools, no weight loss, no hair loss and most importantly, NO INJECTIONS! The tides of change have truly shifted with the introduction of these new radical non-injection drugs to treat our Hepatitis C. I'm a living example of how effective these drugs are. Being a Genotype 3a, coupled with HIV and Hemophilia, the odds have never been in my favor. Geno3's are more common for relapses coupled with increased risk of fatty liver disease. But, as week 4 of treatment with Sovaldi and Ribavirin come to pass, I was officially undetected. What took 4 weeks with this new regimen, took 18 with the old standard of PEG-Interferon and Ribavirin. My cure rate is in the mid 90 percentile range, and for the first time the word cure and Hepatitis C can be boldly uttered in the same breath.

CLOSING ADVICE
As I approach the final month of treatment, I'm surrounded by some amazing friends, an amazing church at Real Life Christian Church here in Central Florida. God, my wife and church have been the foundations for mentally and emotionally dealing with treatment and it's ups and downs. My advice to anyone seeking treatment for their HCV is to make sure they have a well established support system in place. It's good to have a group of people to confide in, to let off some steam and vent to, and to rejoice in your triumphs and give love during your trials. Whatever this system looks like for you, it's a vital part of the psychological portion of treating your HCV. It's no secret these medications bring havoc on the mind, so it's helpful to have those friends to open up with about your treatment, liver disease and allow that avenue to to be open and honest with who you are. I lived 80% of my life in fear, seclusion and in hiding because of living with Hemophilia coupled with co-infection could easily spread fear in small-towns and rural Appalachia back in the 80's and 90's. I don't have to walk in that fear of my diseases, and I am blessed with an amazing group of men and a church that lifts me up, calls and checks on me, and I meet with often times daily. Faith to me is the crucial element to snap me out of my funk, and whip me back to reality and get my mind focused on the race. I'm just stating what is working, has worked and continues to work for me from my own experiences. At the end of my day to day, it's about Jesus Christ, always will be. I know for many, being open about their disease is something they're not ready for or not even an option. I've come to a place of mind lately where I don't care what others think based on my illnesses, and nothing that has happened to me has been by "chance." My strength lies in my testimony of surviving, thriving and striving to keep the fight moving forward no matter the obstacle. If we loose hope and faith, we're already defeated.

"Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory. I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." Romans 8:17-18 NIV

Day 87 - Update from Last Night (Not Better)

Not doing good this morning. Woke up with a low grade 100.4 fever, still achy, chilling and hurting all over. I called my docs and reported everything, just waiting on a callback to see what can be done. Took some Ibuprofen for fever and drinking lots of water. I also go in for lab work today to see how my white blood cell count is doing and other CBC functions. I need prayer from all my Christian friends, the past 48 hours have been excruciating. -Joe

Day 86, Aches, Chills & Cramps

So this past week, I was up in Atlanta, GA visiting with a friend and enjoying the sites in and around town. Upon many of my travels over the past 6 days, my wife and visited Six Flags over Georgia and rode all the roller coasters, saw on Broadway The Lion King, and visited some film locations from the television series The Walking Dead on AMC. All was going well until Tuesday night, on the way home from our Broadway show, and shortly after taking my nightly dose of Ribavirin, I became extremely chilled, shaky and my lower back began an all familiar deep ache.

By the time I drove to my friend's house outside of Atlanta, all I could do was get in bed with multiple layers of sheets and quilts on me. I was so bad with the shakes, that my wife could hear my teeth chattering. Being an RN, she advised me to take a hot shower. The thick-headed side of me held out as long as I could, and finally 25 minutes later with my hands, toes, head and limbs all cold to the touch, I caved and my wife started the shower for me. By the time I unclothed and stepped in, the chills had reached it's peak, as my hands literally shook and where pale to the naked eye. I wasn't sure what exactly was happening to me. At first my mind raced that I was coming down with a virus, then continued to run with ideas that my immune system is low, and that I'm having an early onset of the flu. It wasn't until I took the hot shower, warmed my body up, and jumped back into bed that my mind began to think logically as my body temperature became stable. Upon putting the puzzles pieces together, I traced the symptoms back to the previous hour when I had taken Ribavirin that I realized I was the ill-fated flu-like symptoms of "Riba-Rage."

I'll be honest, I've never had an episode strike me this hard, and as severe to date while on therapy. And to be frank, I honestly have no "words of wisdom" to offer other than a hot bath or shower. Preferably a nice soaking bath if you have a tub available. I couldn't take Alieve, Ibuprofen or Benedryl as I wasn't having fever symptoms, nor had signs of pain or headache. It was one of those instances where you toughed it out, and got through the night as best one could. Needless to say, I got less than 5 hours sleep last night, and had to get up and drive 6 hours home this morning. And Atlanta was in a major cold zone when we left at a chilling 34 degrees, which didn't help with my lingering chills loading the car up this morning.

I've had mild symptoms like these before, but nothing this severe. Also, deep in my Femur bones on both legs, and deep in my pelvis and coccyx the dull ache and throbbing from last night still persists even now as I'm typing. I go in for my 12 week lab work this Friday, with a follow up doctor's visit on April 28th, 1:30PM. I also have a routine hematology appointment in which labs were also drawn just before I left Atlanta at my Hemophilia Treatment Center this coming Tuesday April 22nd. These labs were drawn at week 11, and hopefully will offer a lot of insight in what's going within my body since my last labs and doctor's visit over 7 weeks ago. I for sure will keep everyone updated.

On a lighter note, I finished bottle #3 while on vacation, and am now 2 pills into my fourth month/bottle. The feeling is somewhat overwhelming in knowing that I'm almost done with treatment. Hang in there dragon slayers, victory and your new life is just beginning. We have to be refined by pain, suffering and ailments in order to appreciate the new lives and second chances that God has given us with this treatment of Sovaldi.

Day 80, Riba-Rage Meme

I made this Meme just for our HepC Dragon Slaying Nation. Only they will get the meaning behind it. I had some photo fun the other day, and yes, the rage man is yours truly, just RAGING!! Hope ya get a chuckle, please share and like! I must state, I was not truly having riba-rage at the time of this photography, just dramatically showcasing how I feel when the Ribavirin kicks in, and I just want to break stuff. Truly a Meme for the HCV community. 

Day 79, Rolling the Dice on Side Effects

Being on treatment comes with a plethora of randomness, including side effects. It's like waking up each morning, grabbing a set of unlucky dice from your nightstand and rolling them to see which side effect(s) you'll face that day. From headaches, acid reflux, nausea all the way down to lethargy. It's no secret from my blogs that I've been battling waves of lethargy at random times throughout the day. It typically will strike randomly, but usually in late afternoon early evening before dinner time. I'll be straight up honest with you, when these moments occur, there are really only a handful of things I've found that work, and coffee seems to be the jolt I need to help me. Now, I know some are all for coffee consumption, while others hate it, and others preach against consuming coffee while having HEPC, while others embrace it. I can only speak for myself, and in this case an espresso does wonders. I've also taken a liking to the Low-Carb Monster energy drink. You don't get all the sugar, but all the things to make you snap out of your brain funk. I must state for the record, I do NOT endorse Monster energy drinks, Starbucks or Duncan Doughnuts; I'm just stating these types of boosters work for me. I'm sure I could take supplements or vitamins for alertness, but honestly, nothing beats a coffee in my honest opinion.

Another side effect I've noticed is weight. When I was previously on Ribavirin and PEG-Interferon back in 2006, two prominent side effects were weight loss and Neutropenia. In a bizarre fashion, I've noticed my weight increase close to 5lbs while on therapy. I've went from 171lbs to now 176lbs. I'm not sure the culprit, but I will be following up with my doctors to soon and have complete lab work. I'm curious to hear what my doctor has to say about the weight gain, as we know lethargy is a big one, but this one has me puzzled. I presume my diet could be a factor, but I'm not much of a late night muncher or junk food addict. Albeit, I start my morning with a glass of juice and a granola bar, and follow up with hearty lunches and dinners. Perhaps I need to cut back on my diet some. We shall see. I'm going to try going on a diet over the next couple weeks to see if my weight fluctuates any, without minimizing my core nutritional intake.

My weight gain does concern me mildly, but I will be honest, not all days are bad on Sovaldi and Ribavirin. I would say 70% of the time, I'm perfectly fine, while the remainder are pesky side effects. Might I add, all the issues I've had so far while on treatment are easily manageable with common remedies. Over the past 79 days, I've blogged about many random side effects, and given good pointers on how I've combated them using my own knowledge, and a little help from my wife who is a hospital RN locally. Most of the remedies I've shared have either came from personal experience, doctor's advice or my wife's own personal evaluations. Below is a summarized list of my side effects and they are linked to the specific blog in which I talk and offer help for each. Please use this cheat sheet to easily navigate my blog on Sovaldi and Ribavirin treatment related side effects.

• Acid reflux, indigestion, GERD, irritable bowels, diarrhea, constipation etc...
• Headaches, Brain Fog
• Nausea, vomiting

Day 73, Go Away Headaches

One side effect of this therapy persists, not every day, but shows up randomly to thrust it's ugly face into my life. Headaches have been my most prominent side effect while on Sovaldi and Ribavirin (800mg). My only real strategy to combat their persistence is 2 Alieve and an hour or so of rest. I can definitely conclude that it's the liver medication causing these headaches, as before I rarely got one, and when I did, it was from staring at a computer monitor too long coding web sites or in Photoshop hours upon hours. These headaches are different from normal tension headaches, so much, that I can feel the pulsating behind my eyes. Almost perhaps like a sinus related issue? But my allergies, at best, have been decent the past few weeks, and no real severe moments of scratchy eyes, congestion, coughing or what I refer to as, "river nose." River nose is when you can bend over a sink while shaving, brushing teeth, putting on shoes etc.. and your nose just drips like a leaky faucet. That is "river nose." #RiverNose

I know different people based on health situations, complications and their own personal preference will choose different approaches to their headache woes, but when one is on high-powered toxic liver therapy, sometimes those fallback methods tend to become skewed and greater measures must come into play. That's where I am now, the Alieve works for a while... but then the residual sensations lingers into the evening and night. I have actually had episodes so bad, that I could barely open my eyes even in a dark-lit room from the pulsating throbbing going on inside my head. As the little cartoon above demonstrates, it feels like the top of my head is going to explode.

So here's Joe's 3 step golden rules for Hepatitis C liver treatment related headaches.

1. Drink plenty of fluids, 64oz a day at least - One may not realize it, but drinking fluids hydrates your cells, body and membranes, and causes your kidneys to flush out toxins and even your medications. Once the medication is absorbed into your system and cells, the residual has to have somewhere else to go, your digestive tract. Drinking plenty of water not only flushes your system daily of all the medications and toxins, but for me personally, I generally tend to feel better if I've drank plenty of water during the day. Days where I lack or procrastinate, is typically when the headaches and other side effects rear their ugly heads. 
2. Rest & Power Naps Daily - Your body, especially your liver and immune systems are going through rapid changes while on liver treatment. Your body sometimes has a hard time adjusting and waves of lethargy will strike at any given moment. Taking a 20-30 minute power nap, if it's doable, can reset your body, charge it up and help you finish out the rest of your day. For me the best time to power nap is 1 hour after lunch, that's when you get the after lunch grudge match of alertness and sheer lethargy. 
3. Take Pills to Control effects of Other Pills - It sounds ironic, and cliche, but let's face it, we have to manage our side effects somehow. Whether your resort of herbal remedies, holistic approaches or you're like me, take two Alieve and call me in the morning type, we all can agree something has got to be done about managing our side effects. Whatever your approach, talk to your liver treatment care specialist and consult on the best approach for you to control your headaches, side effects and make your quality of life better while on liver therapy. And remember, the pain is worth the end result of being potentially rid of your dragons once and for all.