Monday, July 28, 2014

I'm Rebooting

Today, July 28th, is #WorldHepatitisDay, and as we mark today with global awareness, I want to share some pretty awesome news from a visit to my liver doctor today. I had a follow up visit with my Hepatitis C physician Dr. Katherine Smith in Orlando, Florida. It's been over a month since I last seen in her clinic, and this visit was my "post treatment" visit. The virus still remains undetected at the end of therapy, and I will follow up with Dr. Smith on October 20th for my 3 month post treatment visit. Here is a look at my recent lab sheet from the viral analysis.

I told the doctor about a few symptoms I've been having; restlessness, insomnia (mind going a million MPH), and, not to be too informative on this one, but for the sake of the #HCV community I'll list it, diarrhea. She said it was not uncommon for patients who have totally cleared the virus to experience waves of energy, motivation and strive. and the restlessness and energy at night is my body attempting to adjust to a new normal. For so long my body has been used to fatigue, lethargy and a general run down sluggish feeling that I haven't had much energy to do much day to day. Now, I'm hard wired to and ready to plow ahead. As for the random moments of dysentery, same thing applies in my digestive tract as well. My body is rebooting from the inside out. My liver is regenerating, my metabolism is rebuilding itself, my digestive tract is adjusting to a new function of normality, something I'm not used to. Dr. Smith stated that over time, the body will eventually level out, and my symptoms will become less and less enhanced as the weeks go on post treatment. Pretty amazing stuff. I never fathomed my body literally healing and regenerating, but now, it's really happening. I'm a new man, walking in a light and a new victory, leaving my dragon to nothing more than ashes of ruin and a vague memory in the vastness of the future that lies ahead.

As if my life couldn't get any better, this research was published on July 21st, 2014 about a possible upcoming cure in the fight against HIV/AIDS. As if my life couldn't get any more fantastic, the actual word cure and HIV are now being spoken in the same sentence, and the research is under way. Take a moment to watch this amazing and informative video on the new science that could possibly make HIV a thing of the past. To read the official release from the research at Temple University, click here.

Thursday, July 24, 2014

30 years, 9 months, 17 days

Hard to believe when looking back, but 30 years, 9 months, and 17 days ago I was diagnosed as having HIV. It wasn't until years later in 1988 that I found out I had Hepatitis Non-A, Non-B, which at the time there were no conclusive tests or discovery of Hepatitis C.

It wasn't until roughly 1992, blood tests were available for patients to confirm Hepatitis C. It all goes back to November, 14th 1983, when my mother got a letter in the mail no parent should be expected to receive [click the letter to the right to read].

According to my mother's account, she was instructed to check the LOT numbers on my Factor VIII concentrates to the numbers they provided to be contaminated batches riddled with HIV and various forms of Hepatitis. Sure enough, the numbers matched, and so began my 30 year journey into co-infection living with HIV and Hepatitis C.

Using, I was able to determine something pretty astonishing; I've been living with co-infection for over 30 years. But, something this past Winter happened on February 11th, 2014 that changed my life forever. I started a new drug treatment on Sovaldi and Ribavirin, and within just 4 short weeks, my Hepatitis C was gone. When I say gone, I'm referring to "Undetected" Status. Clinical protocols require a Sustained Virologic Response [SVR] of 6 months post treatment to be 100% certain; which means if the virus remains undetected 6 months after treatment, it is in fact a cure.

The picture is of me and my father in Winter 1983, and as you can tell from my pajamas, E.T. was a huge hit the summer before. I was roughly 4 years old in this picture, and based on the date of the Hemophilia LOT numbers being contaminated, I was just 3 years old when I become co-infected. It's strange saying I've lived with two deadly viral illnesses for over 30 years of my life. This November I'll 35 years old, and hopefully, by God's grace, I'll still be Hepatitis C free and thrive to see 35 more years in 2049. I'm certain within this decade we'll see huge leaps forward in treatment and cures for HIV/AIDS once and for all. It's been a long time coming.

Funny feeling it is... seeing loved ones and friends pass away, living through the crisis of the 80's of the AIDS epidemic to this point today. I can only believe and know for certain I'm here for one reason, to be a witness of the miraculous hand of a True and Living God.

I don't have to search the world over 100 times for mysterious signs and wonders of miracles... the fact is, I already am one. I say that with boldness and confidence, not with pride. My family has endured enough trauma and heartache from this wretched disease Hemophilia. But if I'm the one to survive, then I'll be the one to testify of how awesome my Lord and Savior Jesus Christ truly is. Think about it, how many people do you know that has survived 30 years, 9 months, 17 days with Hemophilia, HIV and Hepatitis C whom are alive to share their story? Not many...

Wednesday, July 16, 2014

Side Effect Alert!

Since I've been off treatment now a full 8 days, my body has slowly been readjusting to some sense of normality, if there is one for me. I have noticed subtle yet different changes in my body since I've come off treatment. I've always suffered from mild forms of acne, and around 4 months into treatment that slowly started to fade away and I haven't had any more issues since. This has been a problem for me since my teens, and I thought it would clear up at some point, but it never did. I am not certain if Hepatitis C causes acne, but I am certain not having it anymore has cleared my face up 100%.

Also, another interesting note: I've had incredible amounts of energy. Even so much, my wife has to tell me to calm down and stop working around the house and in the yard. I've mowed the lawn, trimmed my entire property with a weed trimmer. The following day I painted an entire bedroom, ceiling, walls and trim all by myself. My wife was sure I was done for after that for the weekend, as the painting spree was last Friday. Sure enough, come Saturday I was ready for the mall and long walk through IKEA to get some furniture. It's been astounding how much energy I have now. I hit a sluggish spell around 3:30pm in the afternoon, but if I'm busy doing something, usually only lasts briefly.

There's no denying it, being on treatment has done something life changing in my body. It only took just a day or two for the side effects of Ribavirin to totally fade away, and that's when I started noticing pep in my step. I obviously take it as a good sign, a good prognosis for my future SVR and that I've finally beat the dragon. One cannot help to feel almost like a super hero at times. The picture above was drawn and painted by me just before my treatment began in January 2014. I remember actually drawing this in the exam room at my first liver doctor appointment, a visit prior to the one of me being put on Sovaldi, before I knew the drug was FDA approved. It was at my next visit, around January 10th, that I found out about Sovaldi being approved and me being put on the drug shortly after. I can't help but feel lately like Superman, all this energy I now have, up... up... and AWAY!

I had labs drawn on July 9th, and will go in on 28th to my liver doctor to get my 24 weeks post treatment results and HCV RNA reading. Fingers crossed dragon slayers!

Saturday, July 5, 2014

Day 165, Final Two Days

It's been a busy week, and this final week of treatment has flown by. With the July 4th Holiday yesterday and my friends being in town out of Atlanta, my wife and I have been spending a lot of time with them which has helped get me through these final days of liver treatment.

Yesterday we went to EPCOT at Walt Disney World, and spent the day with each other and ending the night with a bang for Independence Day. Mike, his family and I go back 8 years together. He was there for me when I finished my liver treatment in October 2006, also the best man at my own wedding, even his children took part as ring bearer and flower girl. It's not one of those friendships you wouldn't simply call best friends, it's more family. He's from Atlanta, and whenever his family is in town, which is pretty often luckily, we always end up having a blast in the theme parks. Mike and I have weathered many storms together, personal lives, overcoming, and doing our best to rise up. He's truly like the brother I never had.

As Monday gets closer, the final pill and day of treatment, I feel as if I need to pinch myself to make sure the past 6 months has not been a dream. It's not everyday you find "the" good doctor who introduces you to a ground breaking and life changing liver treatment that will spare one's life from transplant, cirrhosis and end stage liver disease. Sovaldi has been that drug for me. It really works, and a cure is really achievable! After over 30 years, I will soon be walking in the shoes of a second a chance on life, and stride in victory as my own dragon has been slain. With no pun intended, or for lack of a better phrase, that truly is "a hard pill to swallow." But, one I embrace with open arms.

See you on Monday gang.