Thursday, May 29, 2014

Day 128, Feeling Better / Doctor's Visit

I can't begin to thank you all so much for you prayers over the past couple of days. I'm feeling much better after my bout with another treatment related sinus induced, yet pharmaceutical enhanced side effect driven illness; [Dang that's a mouth full]. The swelling of my glands is now gone, and even though I'm still left with a nagging cough and some lingering yellow junk secreting from my head's membranes, I'm doing terrific. I feel the best today I've felt all week since I started coming down sick again on Monday, and I know it's a God thing and He's healing me once again. I'm almost certain though I haven't seen the last of things #RibaFunk, as I still have one more month left of Sovaldi and Ribavirin, with a total of 39 days remaining. We all know though, in the end, it will so be worth a few months of headache to thrive with a life free from something damaging my liver. After over 30 years, my dragon will be slain, and I've made this Dragon Slayer Shield logo to commemorate those who are close to, or have completed Hepatitis C therapy. God Bless our slayers, pill takers and valiant warriors around the world.

Today I had a doctor's visit on my 5 month check up into treatment. Wonderful news, good vibes and great results all the way around today. All my vitals and lab work came back astounding, all in normal ranges, especially my liver and immune functions. Talk about being blessed beyond measure! Even though this treatment regimen has given me ups and downs, #RibaFunk, #RibaRage etc... the end is almost within grasp, and the finish line is ever so close now. For those of you outside the Hepatitis C community, RibaRage is a slang term for the harsh side effects induced by taking Ribavirin, one of the companion drugs to Sovaldi to act as a 1-2 punch to the virus. Check out my previous post from two days for more details and links on Ribavirin side effects. Upon the end of my visit this afternoon, I was given a 2 month post-treatment appointment slip and lab work to be done at the end of treatment. Wow... My doctor informed me that HCV RNA viral loads will be check at 3 months, 6 months, 1 year and 2 years post treatment for 100% confirmation. But I'm sure with a relapse rate of 2%, the odds are in my favor being a Genotype 3a.

So here I am, finishing up bottle 5, and my final shipment will be in hand next Thursday. I never knew what 2014 would bring for me in terms of health, treatment and overcoming, but wow has it been a wild ride, but in a good way. God has delivered on time, and gave me a treatment that I can tolerate, and in the end be cured once and for all from Hepatitis C. The future is wide open. No more lingering thoughts of liver transplants, cirrhosis or end stage liver disease. I can't begin to tell you how joyful that makes me feel, and blessed!!!

Before I go, I just wanted to share this video with you from contemporary Christian music artist Kari Jobe, and her newest release called "Let The Heaven's Open Up." This song got me through a lot yesterday as I played it over and over on loop. Amazing how uplifting your spirit can become when you draw closer to Him.

Tuesday, May 27, 2014

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 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

Wednesday, May 21, 2014

Day 120, 12 Tips For Liver Health

We all do things in life that comes with consequences; unhealthy eating, smoking, drinking or living a toxic lifestyle of drug addiction/abuse. There are factors and things we can do to prolong our lives while we're in the pool of thousands awaiting their treatment regimens on the new medications coming out for Hepatitis C. I need to state for the record before we dive in, I come from a Christian home, and so drinking, smoking and drugs were not an enticement for me. The only time in my life I ever drank any sort of alcohol was at my own wedding during the main champagne toast. Though I lived a sheltered life, it helped me in the long run be healthier in my adult life.
  1. Get Educated - I can't express enough how vitally important it is to get educated on your disease and what you can do in your own life to inhibit liver damage. Knowledge is power, and if you live your life with a sense of pride and that you think you know it all, you're heading down a road of disaster. If you or someone you know is living with Hepatitis C, it's crucial you understand your limits, boundaries and do your best to change elements of your lifestyle to help accommodate your disease and in the long run, prolonging your life. You need to know what the terms viral load, genotype and rapid responder mean. Dig in and start reading! Start your education by clicking here.
  2. Put The Drink Down - It was once explained to me by a University of Kentucky Gastroenterologist Dr. Steven Shedlofsky that drinking alcohol with Hepatitis C is like pouring gasoline on open firery coals. The disease progresses much more rapidly and damage including fibrosis and scarring advance at higher rates than those who put down the bottle and prefer a sweet tea or iced water. Here is a great article about alcohol consumption while living with Hepatitis C and/or HIV
  3. Every Breath You Take - There was a time in my life when smoking sort of enticed me, but after trying my first cigarette and that horrid after taste in my mouth, I never caved to the addiction of smoking. Smoking rapidly increases chances of disease progression and eventually makes one a high risk for liver cancer [hepatocellular carcinoma]. Men with Hepatitis C who smoke have a more than 136-fold increased risk of liver cancer. Read more about smoking and Hepatitis C.
  4. You Are What You Eat - Given today's increasing knowledge of harmful chemicals in processed foods like additives, GMO's and artificial sweetners can/will cause more harm to our bodies. Eating home cooked meals in balanced portions and straying from the fast food mecha can bring new vigor to your life. Everything you put in your mouth is processed, broken down and digested through your liver. Proper exercise and a monitored diet will control our calorie intake and help you avoid other unwanted medical conditions like heart disease, diabetes and high blood pressure. We owe it to ourselves and HCV survivors to change our unhealthy habits to ones better suited for really what our bodies need. HepMag fellow blogger Connie M. Welch has written an astounding article on liver disease and healthy eating. You can find that article here.
  5. Seek Treatment, Don't Wait - If you've been diagnosed with Hepatitis C and your condition hasn't progressed and your dragon remains dormant, that is typically the best time to attack. I've seen many friends live their lives only to have their HCV rapidly progress in later years, resulting in liver cancer, cirrhosis and end stage liver disease [ESLD]. Just because your virus is at bay of the past few  years, you've been leading a symptom free life doesn't mean you can't treat. I cringe when I hear patients often prolonging liver treatment because they're okay... With new drugs rapidly coming on the market and available by the FDA, you owe it to yourself to fight for the cure, slay your dragon and move on with the next chapter of your life. Seek treatment today, here is a list of doctors in your area to help you fight back and reclaim your life.
  6. Get Adequate Rest and Replenishment - Adults need 7-9 hours of sleep a night for the body to be fully rejuvenated for the day ahead. Many of us have crazy sleep cycles, our jobs and life get in the way and there are truly not enough hours in the day. But I can't express how important it is to get adequate rest at night. Be sure to not consume any caffeine after 6PM, and no alcohol! You shouldn't be using tobacco products first and foremost, and it's noted that tobacco use will actually keep your motor functions awake during prolonged periods of the night. Things like light, noise, hot rooms, uncomfortable bed or pillow will make your night even more cumbersome. Things like sleep masks for the eyes and ear plugs will reduce light and noise for a calm night of test. Click Here to learn more about Healthy Habits While Living with Chronic Liver Disease.
  7. Drink Water, Lots of Water - This one is so easily overlooked, avoided and ignored, but essentially one of most important choices you'll make for your body. Whether you're on treatment, preparing or waiting, you still need to be drinking plenty of water daily. 64-72oz of water a day is a good threshold for water consumption. This can easily be divided up into 8-9 cups of water a day from breakfast until night. Your liver and kidneys work overtime while living with Hepatitis C to eliminate your body of toxins. Drinking water not only hydrates your body's cells, but helps promote kidney function to release toxins in the bloodstream and keep you from feeling sluggish. I recommend the Waterlogged App for assisting you with your water drinking habits, best part is it's free. For more information on water consumption, follow this link.
  8. Herbal Liver Supplements - If you're waiting for liver treatment and in the process of scheduling a doctor, I highly recommend seeking some sort of herbal supplement to assist your liver function. Natural supplements like milk thistle, lipoic acid, selenium among others offer great health benefits if you're not currently on liver treatment. For a list of the Top 5 Herbal Supplements Recommend for Liver Health, follow this link.
  9. Faith & Spirituality - For many, coping with the effects of chronic liver disease can be stressful. It can take a large toll on the mind and drain us of our vitality if we allow it to. Whatever faith or spirituality you believe in, often times having that hope of something greater can carry us through the darkest of times. I know it has for me, and I encourage anyone with Hepatitis C, HIV or Hemophilia to seek faith. It looks very different for very many people, but the benefits can give you peace of mind, calm your anxiety and reduce your stress levels so you can live a thriving life. For me, being a Christian provides me that level of comfort, peace and calm that no one else can offer. Sound mind for many is often times the best medicine.
  10. Develop Memory Skills - It's noted that people living with Hepatitis suffer with memory skills, brain fog and or short-term memory loss. Don't panic if you become forgetful or stuck on a thought longer than a few minutes. To keep your brain active and healthy, it's good to develop techniques to help you stay sharp. Whether it's working a crossword puzzle, brainteasers, develop a hobby, play board games, learn a new language, play a challenging video game, or memorizing your most beloved quotes, any of these activities will increase your motor skills, improve your reflex time and allow you to decipher real world situations. There are many treatable conditions that cause cognitive impairment, so before we jump to conclusions, start with the basics. 
  11. We Were Designed To Be Connected - Living life in solidarity for some may seem like the the only way out, but having a group or circle of friends to go to in time of need is the best blessing. We're not meant to lead lonely lifestyles, we're designed to be connected with each other, share life, live life, rejoice in our triumphs and grieve in our trials. Establishing a small group of friends while living with Hepatitis C can provide a world of conversation, an outlet of frustration and the avenue for venting. It's not easy for some being open about their diseases, but if you're bold enough, the benefits truly outweigh the risk of being alone with your disease. Join a message forum, find friends in your local area you can connect and share life together in a support group. Much joy and relief comes from those who share the load. Get connected today!
  12. Think POZ - When all else fails, laughter, being with friends and family, and immersing yourself in a healthier state of mind will change the way you look at the world. I was once told by a friend from Kentucky, "True happiness is 20% the body, 80% the mind."  Embrace every circumstance for what it is, and move on. Don't dwell in the past, don't linger on the would be, could be or should be's of life. Focus your mind on those things that bring you joy, whether it's soaking up sun on a beach, going fishing on weekends, a girls/guys night out or just going out to see a movie with a bunch of friends, any of these can distract your mind to help you develop more socailly. Hobbies, outdoor activities and changing your state of mind to refuse the negative and embrace the positive will make the road of living with Hepatitis C a little less rocky. Remember, you are not your disease!!! So stop acting like you're a victim and act like the warrior you are meant to be; a dragon slayer.

Monday, May 19, 2014

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.

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

Friday, May 16, 2014

Day 115, HIV Positive Hemophiliac on Cover of Men's Health Magazine


I met Vaughn Ripley back at the Hemophilia Federation of America HFA annual conference, but have known him for far longer. We became friends on Facebook, and share stories of living day to day with Hemophilia and co-infection. Vaughn not represents the entire Hemophilia community, but is an advocate for HIV Awareness and a survivor of Hepatitis C having been cured some time ago. His strive for health, mental wellness and overall positive lifestyle has excelled him beyond what was initially predicted.

Vaughn needs our help, so this a call to the entire community to assist us. Vaughn is trying to land the role as cover photo on an upcoming issue of the popular "Men's Health" magazine. The famous publication is seeking the not just a common man, but one who embodies extraordinary talents, overcome insurmountable odds, and lives a notable healthy lifestyle. We have until June 15th to vote, and you can vote once a day for him. VOTE! And vote daily! The direct link is:

Wednesday, May 14, 2014

Day 113, Ryan White's Mother Remembers 25 Years Later

25 years later, we've come so far in, but still have so far to go in terms of progress. Roughly 12,000 Hemophiliacs in the early 80's were diagnosed with HIV/AIDS, and Ryan White became a national icon for news media and press during his struggles and battles in his home town to overcome the stigma of his illness, and the ignorance of so many against the White family. Thanks for all you do Jeanne White-Ginder, and thanks for being a voice over the past 25 years for so many who don't or can't.

Friday, May 9, 2014

Day 108 - Another ER Visit & Florida Healthcare Changes

Back on April 21st, I made an initial visit to the ER with chronic sinusitis (sinus infection.) At the time I was written a script for a 5 day Azithromycin regimen and was expected to make a full recovery. Two days later, I was back in the ER again over a case of conjunctivitis (irritation of the eyes) which was directly related to my sinus issues. On May 6th, at roughly 3AM in the morning, yet again I had to made another trip back to the ER for swollen glands in my neck. The pain had become so intolerable that I couldn't swallow food or even drink. My mouth was pooling with saliva as it hurt so bad to swallow from the swelling of my throat. I was seen yet again, and was told by the doctor there that the Azithromycin may not have been a long enough treatment regimen for 5 days, that I need a more powerful 10 day Amoxicillin 875mg tablets bi-daily. It's been a crazy month, that's for sure, and knock on wood, the swelling is gone, the medications are working and I'm feeling a lot better. Perhaps this sickness has grounded me from doing other things I normally would have, but I find it a blessing in midst of any suffering. Why? It humbles us, makes us seek patience, humility and compassion. In those moments in the ER, all I wanted was relief, to eat, sleep and be back to normal, but I had to endure long awake nights, tossing and turning, light meals, headaches, swollen glands, infections, irritated eyes and a plethora of other randomness. But I'm doing fantastic!

Florida Initiates HMO Plans for Medicaid Recipients
The state of Florida effective May 1st, has officially done away with it's former programs to treat specialty diseases like Hemophilia, HIV and Hepatitis C and instituted new plans for patients with now with an HMO. I typically don't go into much detail about my healthcare coverage because those things are generally very private for me. But this time, I think it's worth being open about. I've been on the MediPass program since I've moved to Florida back in March 2009, and it's been good in some spots, but bad in others. Example: It doesn't cover dental cleanings, just emergency dental procedures. It did cover annual eye exams, but on the flip side, I could never choose which doctor I wanted to visit, it was always predetermined. If you click on the image to the right, you'll see The Florida Agency For Healthcare Admission or AHCA has issued a statement about the removal of MediPass statewide; "Effective October 1, 2014, the MediPass program will sunset statewide." Now the upswing of this new wave of healthcare options is that now I can choose from over 20 other companies to manage my healthcare at no cost. I chose to go with Clear Health Alliance CHA because their strong coverage on infectious disease and treatment seemed to outshine the other options. This new plan also offers me annual dental cleanings, eye exams and I was able to choose which doctor I wanted to be my Primary Care Physician or PCP. The only hiccup I've encountered in this new transition occurred this past week when attempting to order month 5 of my Sovaldi and Ribavirin liver therapy. My claim was rejected, and I was a little on edge for a couple days. Having only a 5 day supply on hand of Sovaldi+Ribavirin, and knowing I couldn't miss a single dose given the overall importance of this liver treatment, I was a little concerned about this new healthcare HMO, CHA non-MediPass ordeal. But, come to find out, all that CHA required was a pre-authorized form for the continuation of the treatment for my final two months. One quick fax, and month 5 was delivered safely in my hands yesterday morning. During this transition of healthcare coverage here in Florida, I'll be sure to blog about pros or cons about the new system. Time will tell, so we'll just have to wait and see how things go.

May is Hepatitis Awareness Month
The American Liver Foundation declares every May to be Hepatitis Awareness Month, and in honor of May 2014, I have created some awareness wrist bands that you can buy to show your support for Hemophilia, HIV and Hepatitis C. These bands are only $5 each, and showcase our web site address on one side, and my favorite Christian saying "Too Blessed 2 Be Stressed" on the other. As an added bonus, in the inside is engraved with "Hemophilia, HIV & Hepc," so you can show your support for friends and family. All proceeds from these bands will go to help fund cost of this web site, blog and the "I Strive 2 Thrive" campaign to raise awareness for Hemophilia, HIV and Hepatitis C. Get yours today!

Thursday, May 1, 2014

Day 100, Recovery & Moving Forward

Since my two ER visits last week, I have since completed my antibiotic therapy and am recovering slowly from the sinus infection from last week. Some lingering after affects from the ordeal have left me with sore lymph glands under my chin and neck area near my throat. Even today, it hurts to swallow food and water, but I must press on and continue with the daily fight. My wife, the RN, is keeping a close watch on my tender and aching glands under my neck, as it's typical for those areas to become tender considering the trauma I've went through the past week. I'm no stranger to glands swelling up by the way. It's not uncommon for someone like myself to experience these types of occurrences after an infection has been sited. When I lived in Kentucky, during the Spring, my glands would swell so bad, they were visible from just looking at my neck and jaws. Spring time in Kentucky I do not miss at all. Florida is green all year around, and we have mild Springs in January through February. Yet another reasons why I love the sunshine state.

I can't believe today is officially day 100 of treatment. It's been such a journey just getting here, and now, next week, I'll call the pharmacy to order bottle #5 (month 5) of therapy. I had a follow up doctor's appointment with my liver doctor this past Monday the April 28th, and my CBC labs looked great. No decline in white blood cells, and my immunity is at an all time high since I've been keeping track. My liver enzymes were also at an all time low, ALT-14, AST-15. I guess with the swollen glands, I take that as a good sign, not a bad. If my immune system was compromised, I would not and could not have the bodily defenses to attack and fight back. A doctor at University of Kentucky once told me, "...swollen glands, though scary and painful, for you are not a bad sign, it's a good sign that you have immunity and that your body's defenses are doing their job." My liver doctor whose treating my HCV asked to see me next month for follow up and labs. I asked her before I left, given my unique case, what is her protocol for calling me cured post treatment? She told me given my complex medical background, a viral load would be taken at 3 months, 6 months and 1 year post treatment. The true definitive gold standard in her eyes is I'm still undetected at 1 year post treatment, that would be the declaration of a cure in her eyes.

In terms of moving forward, amazingly as I literally knock on wood, haven't had any major side effects to report in the past 2 weeks while on liver treatment with Sovaldi and Ribavirin (800mg). Sure I have the afternoon waves of lethargy, moments of zoning off into Neverland, but overall, everything can easily be managed with drinking lots of water, eating right, and taking my Ibuprofen as needed. I give credit for all of this to God in Heaven. Truly He's looking over me during this whole treatment process, and I know for sure His Mighty hand is orchestrating this entire journey to mold me into something far more greater. It's time for the Slayers to awake, it's time for our dragons to die, it's time for lambs to become lions and lead the pack. We're on the cusp of this exciting new era in liver treatment, and I for one don't fail to give God all His rightful deserved glory daily!
I thought I'd never hear the words Hepatitis C and cure uttered in the same breath, but truly these are remarkable times we're living in. Stay fruitful, and strive 2 thrive in everything you do daily! #IStrive2Thrive