The COVID-19 Era Sparks Opportunity

Even in the midst of a global pandemic, there is always an opportunity. That situation came just as the world went on lock down; as crowded cities were decimated to cinematic post apocalyptic scenes. There was an eerie hush over our inner cities and even in rural communities as families have been forced to adapt to new norms. It's been quite the year, but even amidst the hardship of a pandemic, there's situations where we can provide a ray of hope to those who need it. Such is the case of the journey I've been on the past few months. 

Even in lockdown, and limiting my exposure to public places, I've had to learn to adapt to being home a lot more often. I'm a high risk candidate having an already compromised immune system, I have to take extra precaution just going to the grocery store. But, we must learn, adapt and move forward. With all of this free time, I've been personally challenged with one of the greatest tasks of my life, writing my autobiography. It's a personal goal I've been wanting to do for the past decade but I haven't found the two or three months of free time to complete the task. What a task it is. 

Not only do I have to revisit some of the most trying times of my life like bullying, trauma and pain, but I have to prepare myself for a mental state of mind of true transparency. To tell my story accurately and effectively, I have to be willing to scale back my own inhibitions and just be real about my journey. This idea is something I've personally struggled with my entire life. It's one thing being an advocate for the bleeding disorders community, it's another notion altogether opening up about the horrors of the day to day. 

At the end of March 2020, I began that journey of writing it all out. It felt liberating, freeing even. There's portions of my story that are more spiritual, and dealing with the complications of a hemophiliac with severe joint and mobility issues. The mental weight of this is explored in vast detail as I cope with the loss of loved ones, depression, chronic pain and coming to terms with personal demons. This collection of stories and life experiences will be called, "Bloody Incredible." For the first time in my life, there is no stone of my journey left unturned, as I bring light to all my personal struggles, along with the physical ones as well. This 12 chapter, 80,000 word work is slated for a 2021 release. Currently the book is under editorial review, and my ambition is to self publish early in the year. 

I will have a crowd funding opportunity for those who want to donate the publication efforts, and each person who donates will get a copy of the book and a personalized note of appreciation. The link to that funding option will be made available very soon, so be on the lookout on my social media outlets for more information. 

So many wonderful people have helped to contribute to this book to make it even more special. The co-founder of the world renowned Blue Man Group wrote the foreword to my book, in addition to my hematologist at University of Florida writing a note to close the book. I have the honor to give you a small excerpt from my book below, which is taken from the opening prologue. You will understand the true nature of what to expect from "Bloody Incredible" after reading this. 

    "One day, a series of dark thoughts invaded my mind,

and a single thought germinated, what if I stop my HIV

medications altogether? What if I end the pain and

challenges my parents have faced in keeping me alive? No

longer will I have to live a life of pain from suffering with the

horrendous side effects of hemophilia and HIV. What if I stop

them and allow the virus to consume me, then wither away

as AIDS takes its course? No one would have to know I was

flushing them down the toilet, and it would just appear as a

fluke that I’m non-responsive to medication. What if?

    I wrestled with this idea of simply removing myself

from the equation, relieving the burden on everyone around

me and just fading away like I never existed. I’d be a mere

statistic on the CDC’s handbook of HIV infected

hemophiliacs, and no one would give a damn anyway. It’s so

painful to see yourself as a burden and attempting to find

reason and logic amidst our trials. Not being able to move

forward in life, bound by the laws of the land, rules of

disability and the restriction of not being able to fully achieve

the potential I know dwells within me is the worst feeling of

all. The goals are right there, within reach, but you can’t even

extend an arm because your lifeline would be severed."

I'm doing incredibly well, all things considered. I still cope daily with chronic pain stemming from hemophilia arthropathy, and maintain a coherent regimen of pain medications and holistic medicine to cope. My weekly infusions of Hemlibra are going well, and I'm pleased to inform you that I've sustained the record of no new bleeds since on the drug. I'm nearing my two year anniversary on January 16th, 2021 of being two years, bleed free. Also, my HIV is still well maintained at undetected status thanks to my new regimen on Biktarvy. Stay tuned for more updates as we arrive close to a book release date. Follow me everywhere @istrive2thrive on social media.

Hemlibra Update & HIV Medication Changes

It's been a few months since my last update, but a lot has transpired since then, and I want to let my readers know my progress. Overall, I've been doing incredibly well in terms of health, labs and general well being. Living in Orlando, FL is a blessing in many ways, as my wife and I enjoy the many theme parks in the area. This means lots of walking, sightseeing, riding roller coasters and in many ways, living a normal and productive lifestyle.

On January 16th of this year, I embarked on a new journey on how I treat my hemophilia. It's cutting edge, and a latest therapy called "Hemlibra." Hemlibra isn't your typical intravenous infusion with factor VIII or factor IX synthetic replacement. It bypasses the factor VIII clotting cascade and binds together factor IX and factor X proteins to complete the synthesis of clotting. So in essence, binding two already existing proteins together, and allowing a patient with hemophilia type A with or without inhibitors to achieve almost normal clotting ratios. This does not mean that one is automatically achieving normal percentages of clotting factor as determined by a partial thromboplastin time (PTT) test. It simply means, your risk of bleeding is vastly reduced by 94-95% for further joint damage, physical injury, etc...

Since starting Hemlibra in January, I'm delighted to report some astounding news. Before I do so, let me just state on the record, I am neither endorsed nor affiliated with Genentech, and I am not a beneficiary of any of their programs. I am simply a patient on the product. Since my first infusion on Jauary 16th, I am delighted to report I have had absolutely zero bleeds;  neither joint, muscle or otherwise. It's very strange and very odd changing a habit and routine that's been ingrained into my very being the past 35+ years.

Old habits die hard. Not only do I have any bleeds, but I haven't had to puncture my veins since January (with exception of routine lab work) for hemophilia related therapy. Hemlibra is a subcutaneous injection. I also have not experienced site injection reactions either. What's even more strange, in all the right ways, is that I haven't a single bleed in 9 months. The longest I've ever gone without requiring factor VIII was maybe 2 weeks at most. It's truly a wonder drug.

Just to help paint the picture on my overall activity just for the month of September. I screen captured my walking totals for the entire month. As you can see, mid week's I'm less active with around 5-6,000 steps a day. On the weekends, things really kick up when I venture off to the theme parks where extensive walking totals are accumulated. Since being on Hemlibra, I can achieve upwards of 8 miles a day in walking at around 17K steps. It's unheard of! Of course, I'm sore the next day, but it's a good sore, one in which I know my body is getting exercise, my joints and muscles are working and I'm being extremely active. On previous therapies, I would be lucky to make it 4 miles without sparking a bleed in my right knee or ankles, which are my target joints. It's truly remarkable, and even though there are other organizations out there committed to spreading falsehood, and deceiving others from switching to Hemlibra, the premise of this post/update is to prove that whatever claims are being said, I'm living proof that the drug works exactly as it says it does. Move over "Big Pharma," there's a new player in town.

Lastly, this past week, my HIV doctor helped me make another big milestone transition in my life. I've been on Triumeq since December 2016, and now, just three years later, I'm switching to an all new standard. The pills shown in the picture show the size comparison to Triumeq (left) and Biktarvy (right). The reason for the switch was because of one component in Triumeq that has been linked to cardiovascular complications and even heart attacks in reported cases. That component is called Abacavir. Biktarvy is supporting a much safer tolerance and less toxicity that previous treatments for HIV can achieve. Biktarvy combines three drugs to create the cocktail barrier so the virus does not invade healthy immune cells. Those ingredients are bictegravir, emtricitabine, and tenofovir alafenamide. I am currently on day 4 of Biktarvy, and I'm happy to report no side effects at all. Previously on Triumeq, about an hour after dosing, I would feel drained, lethargic and zonked out. This happened every day for the past 3 years, and I directly associated that with taking Triumeq an hour prior. So far, Biktarvy is not doing of these mental lethargy issues, and I'm not noticing any other forms of reactions. In 3 weeks, I will go to routine lab work to monitor my HIV viral load and CD4 counts to see how the new drug is adapting to my system. Fingers crossed, and I will report back with any and all findings.

That's it for now gang. Thanks for hanging with me on this crazy and lengthy update. Please follow my social media channels on Facebook, Instagram and Twitter. I update my Instagram account constantly with more in the moment news and information. Follow me everywhere @istrive2thrive.

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.