Monday, January 8, 2024

Complications with Aging HIV

Emergency Oral Surgery
I have brittle bones, and this extends to my teeth. Despite taking vitamin D supplements for over four years, the long-term effects of HIV are taking a toll. This isn’t a concern for newly diagnosed or recent patients, but as a 42-year-old with HIV, my bone density is diminishing. 

Annually, I undergo a bone density scan to assess overall bone health. I’ve dealt with early onset osteoporosis in my hips and lower back for years, and now these issues are spreading. HIV depletes minerals and sucks the life out of my bones and marrow, revealing the impact of living with the virus for so long, despite being undetected. 

HIV resides dormant in my bone marrow’s T-Cells, the epicenter of our immune system, harvesting minerals and reducing bone density. Although HAART therapy makes the virus undetected in lab tests, it’s still present. After 40 years of infection, I have weakened bones and compromised immunity.  

Low bone mineral density (BMD) is common in HIV-infected individuals. Starting antiretroviral therapy leads to a 2%-6% BMD decrease over the initial two years, comparable to menopausal changes (Source: 

I fear this signals the start of more incidents due to compromised bone density. The tooth has been temporarily fixed; a permanent porcelain crown is scheduled for February. I’ll provide updates in the future.

Cracked Molar with exposed nerve

Fixed Molar prepared for Crown

Dental Dam with compound application

Monday, July 10, 2023

Pfizer’s “Science Will Win” Campaign

Despite spending most of his childhood in the hospital because of hemophilia, he is living proof that the right treatment can improve your quality of life. As a child, Joe spent most of his time inside, facing a series of blood transfusions that limited his mobility and prevented him from participating in activities like many kids do.Now, with a once-a-week treatment, he’s able to do the things he once only dreamed of, like hiking and working out with his wife. Visit my page on Pfizer’s official web site, and help me share this incredible opportunity to share my story to the world.

Wednesday, April 26, 2023

Aging with HIV - A Patient Perspective (Over 40 Years HIV Positive)

Join us for a powerful and informative interview on the topic of 'Aging with HIV.' In this 30-minute discussion, we delve deep into the health and life challenges faced by individuals living with HIV over an extended period of time. Discover the top concerns and comorbidities associated with HIV, and gain valuable insights into the needs and barriers faced by HIV+ individuals. We also explore the vital topic of sexual health and the mental health ramifications of long-term HIV exposure. Finally, we offer practical advice on coping strategies and daily activities to support those living with HIV. Don't miss this enlightening and essential conversation on HIV awareness.

Wednesday, April 20, 2022

Featured on Hashtag Our Stories

Hey friends! It's been a while. To be honest, not much has changed in terms of my healthcare and physical status. I'm still taking the same medications, and pursing an active and healthy gym and fitness lifestyle. I'm so blessed to be in the season I am in, and my labs look great! Home life is the best it's ever been, and the wife and I are still traveling and going to the theme parks regularly here in Orlando, FL. 

One thing that is new is I'm currently seeking treatment on my lower back by way of chiropractic care. My first appointment is on Thursday (two days from the date of this post), so I'm a little anxious about how treatment will go for a severe hemophiliac. To be honest, my back could use some major work. Having one leg shorter than the other from a lifetime of target joint bleeds in my right knee, my entire right leg is a half inch shorter than my left. This is because there is no spacing in the joint to cushion impact like a healthy joint's synovium has. My right knee is literally bone to bone. So I will update you guys on the progress there after my appointment. Fingers crossed! 

As the title suggests, I was recently featured on the mobile journalism platform, Hashtag Our Stories. It's founded by Yusuf Omar, and basically allows users to share their stories of triumph, hardship and really peels back the veil from mainstream media bringing new light to how stories of individuals are told and shared. Their stories are shared on social media platforms like SnapChat, Instagram, Facebook, YouTube and Twitter as opposed to mainstream network media. 

In honor of World Hemophilia Day, which was on April 17th, 2022 this year, I was approached by Hashtag Our Stories to record and share my full unbridled story. Below is the video the 3 and a half minute video their editors put together. I've gotten a range of emotional responses, and a wealth of love and support for being so transparent. But, it's not my story, but God's story. God is using my hardships to help comfort the lives of those hurting, with questions and seeking counsel about their own diagnosis. I pray this video will steer your in the right path, and encourage all who watch it let me know your thoughts. My DM's are always open. 

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.