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 www.timeanddate.com, 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...
Thursday, July 24, 2014
30 years, 9 months, 17 days
Labels:
30 years,
co-infection,
coinfection,
faith,
God,
HCV,
Hemophilia,
Hepatitis C,
HIV,
Jesus Christ,
Ribavirin,
Sovaldi,
Survivor
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!
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!
Monday, July 7, 2014
Day 168, Final Day of Liver Treatment on Sovaldi & Ribavirin
Sitting down with my lovely wife, we reflect on the past 6 months of treatment, offer words of hope and encouragement to those on treatment or soon to be; and celebrate as I take my final pill.
The Final Day
My final day of liver treatment, holding the final pill of #Sovaldi. 6 months completed, and my #hepatitisc is gone. #dragonslayer #hcv #hepc #hiv#hemophilia #hemo #ribavirin
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.
Joe
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.
Joe
Subscribe to:
Posts (Atom)