Thursday, December 3, 2020

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.

Monday, September 30, 2019

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.


Friday, April 5, 2019

A Life With Chronic Pain (A Hemophilia Perspective)


The majority of my life, I've dealt with multiple aspects of chronic pain stemming from living with hemophilia. Until recently, therapies and research have shed new light on patients who live and cope daily with these ailments. Also, special guest and hemophiliac troubadour Ryan Seeley joins the panel to share from his own perspective. Join the discussion, and please share to those who could benefit.

Thursday, February 28, 2019

Advancements of Approved Therapies For Bleeding Disorders


With cutting edge research and technologies creating ripples through the bleeding disorder communities, gene therapy offers not just hope to patients, but possibly a cure within the next 4 years. We discuss the new drug "Hemlibra" and ground breaking new genetic clinical trials with astounding results. CLICK HERE to join the live stream on February 28th, 1PM Eastern.

Wednesday, November 14, 2018

Live Stream Discussion on Hemophilia

I took a huge step today and live streamed an open discussion and Q&A session on a new platform @getvokl. I opened up and shared my journey, and offered words of encouragement for those viewing. Check out the live stream in the link below.