Day 118, HCV Then & Now

It's hard to believe that I'm already one full week into bottle five and month 5 of my liver treatment. I'm so close to the finish line I can just begin to see the lights from the finish line. I'll be completely honest, this treatment has been the best blessing and breath of fresh air I've had in my entire life while taking treatments and therapies. In 2006, as some of you know from my past blogs, I treated with the toxic combination of PEG-Interferon and Ribavirin, and faced a plethora of side effects. I lost close to 10 pounds, had blood in my stool, developed a dry peeling facial irritation, my bones ached and hurt the entire duration of that 6 months, and I was constantly sick. Sadly, I didn't even go undetected until very late in therapy of those 24 weeks, only to suddenly relapse just 3 weeks later. The disappointment, pain, depression and a sense of being defeated clouded my mind for months after that.

First and Foremost I'm not a spokesperson for any drug company, nor endorsed, nor given brownie points for mentioning the names of these drugs. But I'm here to tell you treating on Sovaldi has been an amazing ride. As I approach my final month in a couple weeks, looking back retrospectively, I've concluded that this treatment has truly been a Godsend. I've had very mild side effects like headaches, lethargy and moments of brain fog, but everything is so easily manageable with over the counter medications like Tylenol, Advil or Alieve. I've had no skin irritations, no bloody stools, no weight loss, no hair loss and most importantly, NO INJECTIONS! The tides of change have truly shifted with the introduction of these new radical non-injection drugs to treat our Hepatitis C. I'm a living example of how effective these drugs are. Being a Genotype 3a, coupled with HIV and Hemophilia, the odds have never been in my favor. Geno3's are more common for relapses coupled with increased risk of fatty liver disease. But, as week 4 of treatment with Sovaldi and Ribavirin come to pass, I was officially undetected. What took 4 weeks with this new regimen, took 18 with the old standard of PEG-Interferon and Ribavirin. My cure rate is in the mid 90 percentile range, and for the first time the word cure and Hepatitis C can be boldly uttered in the same breath.

CLOSING ADVICE
As I approach the final month of treatment, I'm surrounded by some amazing friends, an amazing church at Real Life Christian Church here in Central Florida. God, my wife and church have been the foundations for mentally and emotionally dealing with treatment and it's ups and downs. My advice to anyone seeking treatment for their HCV is to make sure they have a well established support system in place. It's good to have a group of people to confide in, to let off some steam and vent to, and to rejoice in your triumphs and give love during your trials. Whatever this system looks like for you, it's a vital part of the psychological portion of treating your HCV. It's no secret these medications bring havoc on the mind, so it's helpful to have those friends to open up with about your treatment, liver disease and allow that avenue to to be open and honest with who you are. I lived 80% of my life in fear, seclusion and in hiding because of living with Hemophilia coupled with co-infection could easily spread fear in small-towns and rural Appalachia back in the 80's and 90's. I don't have to walk in that fear of my diseases, and I am blessed with an amazing group of men and a church that lifts me up, calls and checks on me, and I meet with often times daily. Faith to me is the crucial element to snap me out of my funk, and whip me back to reality and get my mind focused on the race. I'm just stating what is working, has worked and continues to work for me from my own experiences. At the end of my day to day, it's about Jesus Christ, always will be. I know for many, being open about their disease is something they're not ready for or not even an option. I've come to a place of mind lately where I don't care what others think based on my illnesses, and nothing that has happened to me has been by "chance." My strength lies in my testimony of surviving, thriving and striving to keep the fight moving forward no matter the obstacle. If we loose hope and faith, we're already defeated.

"Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory. I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." Romans 8:17-18 NIV

Day 115, HIV Positive Hemophiliac on Cover of Men's Health Magazine

DC News FOX 5 DC WTTG

I met Vaughn Ripley back at the Hemophilia Federation of America HFA annual conference, but have known him for far longer. We became friends on Facebook, and share stories of living day to day with Hemophilia and co-infection. Vaughn not represents the entire Hemophilia community, but is an advocate for HIV Awareness and a survivor of Hepatitis C having been cured some time ago. His strive for health, mental wellness and overall positive lifestyle has excelled him beyond what was initially predicted.

Vaughn needs our help, so this a call to the entire community to assist us. Vaughn is trying to land the role as cover photo on an upcoming issue of the popular "Men's Health" magazine. The famous publication is seeking the not just a common man, but one who embodies extraordinary talents, overcome insurmountable odds, and lives a notable healthy lifestyle. We have until June 15th to vote, and you can vote once a day for him. VOTE! And vote daily! The direct link is: http://www.mhguysearch.com/entry/37/.

Read Full Article on MyFoxDC.com.

Day 113, Ryan White's Mother Remembers 25 Years Later

25 years later, we've come so far in, but still have so far to go in terms of progress. Roughly 12,000 Hemophiliacs in the early 80's were diagnosed with HIV/AIDS, and Ryan White became a national icon for news media and press during his struggles and battles in his home town to overcome the stigma of his illness, and the ignorance of so many against the White family. Thanks for all you do Jeanne White-Ginder, and thanks for being a voice over the past 25 years for so many who don't or can't.

Day 108 - Another ER Visit & Florida Healthcare Changes

Back on April 21st, I made an initial visit to the ER with chronic sinusitis (sinus infection.) At the time I was written a script for a 5 day Azithromycin regimen and was expected to make a full recovery. Two days later, I was back in the ER again over a case of conjunctivitis (irritation of the eyes) which was directly related to my sinus issues. On May 6th, at roughly 3AM in the morning, yet again I had to made another trip back to the ER for swollen glands in my neck. The pain had become so intolerable that I couldn't swallow food or even drink. My mouth was pooling with saliva as it hurt so bad to swallow from the swelling of my throat. I was seen yet again, and was told by the doctor there that the Azithromycin may not have been a long enough treatment regimen for 5 days, that I need a more powerful 10 day Amoxicillin 875mg tablets bi-daily. It's been a crazy month, that's for sure, and knock on wood, the swelling is gone, the medications are working and I'm feeling a lot better. Perhaps this sickness has grounded me from doing other things I normally would have, but I find it a blessing in midst of any suffering. Why? It humbles us, makes us seek patience, humility and compassion. In those moments in the ER, all I wanted was relief, to eat, sleep and be back to normal, but I had to endure long awake nights, tossing and turning, light meals, headaches, swollen glands, infections, irritated eyes and a plethora of other randomness. But I'm doing fantastic!

Florida Initiates HMO Plans for Medicaid Recipients

The state of Florida effective May 1st, has officially done away with it's former programs to treat specialty diseases like Hemophilia, HIV and Hepatitis C and instituted new plans for patients with now with an HMO. I typically don't go into much detail about my healthcare coverage because those things are generally very private for me. But this time, I think it's worth being open about. I've been on the MediPass program since I've moved to Florida back in March 2009, and it's been good in some spots, but bad in others. Example: It doesn't cover dental cleanings, just emergency dental procedures. It did cover annual eye exams, but on the flip side, I could never choose which doctor I wanted to visit, it was always predetermined. If you click on the image to the right, you'll see The Florida Agency For Healthcare Admission or AHCA has issued a statement about the removal of MediPass statewide; "Effective October 1, 2014, the MediPass program will sunset statewide." Now the upswing of this new wave of healthcare options is that now I can choose from over 20 other companies to manage my healthcare at no cost. I chose to go with Clear Health Alliance CHA because their strong coverage on infectious disease and treatment seemed to outshine the other options. This new plan also offers me annual dental cleanings, eye exams and I was able to choose which doctor I wanted to be my Primary Care Physician or PCP. The only hiccup I've encountered in this new transition occurred this past week when attempting to order month 5 of my Sovaldi and Ribavirin liver therapy. My claim was rejected, and I was a little on edge for a couple days. Having only a 5 day supply on hand of Sovaldi+Ribavirin, and knowing I couldn't miss a single dose given the overall importance of this liver treatment, I was a little concerned about this new healthcare HMO, CHA non-MediPass ordeal. But, come to find out, all that CHA required was a pre-authorized form for the continuation of the treatment for my final two months. One quick fax, and month 5 was delivered safely in my hands yesterday morning. During this transition of healthcare coverage here in Florida, I'll be sure to blog about pros or cons about the new system. Time will tell, so we'll just have to wait and see how things go.

May is Hepatitis Awareness Month

The American Liver Foundation declares every May to be Hepatitis Awareness Month, and in honor of May 2014, I have created some awareness wrist bands that you can buy to show your support for Hemophilia, HIV and Hepatitis C. These bands are only $5 each, and showcase our web site address on one side, and my favorite Christian saying "Too Blessed 2 Be Stressed" on the other. As an added bonus, in the inside is engraved with "Hemophilia, HIV & Hepc," so you can show your support for friends and family. All proceeds from these bands will go to help fund cost of this web site, blog and the "I Strive 2 Thrive" campaign to raise awareness for Hemophilia, HIV and Hepatitis C. Get yours today!

Day 100, Recovery & Moving Forward

Since my two ER visits last week, I have since completed my antibiotic therapy and am recovering slowly from the sinus infection from last week. Some lingering after affects from the ordeal have left me with sore lymph glands under my chin and neck area near my throat. Even today, it hurts to swallow food and water, but I must press on and continue with the daily fight. My wife, the RN, is keeping a close watch on my tender and aching glands under my neck, as it's typical for those areas to become tender considering the trauma I've went through the past week. I'm no stranger to glands swelling up by the way. It's not uncommon for someone like myself to experience these types of occurrences after an infection has been sited. When I lived in Kentucky, during the Spring, my glands would swell so bad, they were visible from just looking at my neck and jaws. Spring time in Kentucky I do not miss at all. Florida is green all year around, and we have mild Springs in January through February. Yet another reasons why I love the sunshine state.

I can't believe today is officially day 100 of treatment. It's been such a journey just getting here, and now, next week, I'll call the pharmacy to order bottle #5 (month 5) of therapy. I had a follow up doctor's appointment with my liver doctor this past Monday the April 28th, and my CBC labs looked great. No decline in white blood cells, and my immunity is at an all time high since I've been keeping track. My liver enzymes were also at an all time low, ALT-14, AST-15. I guess with the swollen glands, I take that as a good sign, not a bad. If my immune system was compromised, I would not and could not have the bodily defenses to attack and fight back. A doctor at University of Kentucky once told me, "...swollen glands, though scary and painful, for you are not a bad sign, it's a good sign that you have immunity and that your body's defenses are doing their job." My liver doctor whose treating my HCV asked to see me next month for follow up and labs. I asked her before I left, given my unique case, what is her protocol for calling me cured post treatment? She told me given my complex medical background, a viral load would be taken at 3 months, 6 months and 1 year post treatment. The true definitive gold standard in her eyes is I'm still undetected at 1 year post treatment, that would be the declaration of a cure in her eyes.

In terms of moving forward, amazingly as I literally knock on wood, haven't had any major side effects to report in the past 2 weeks while on liver treatment with Sovaldi and Ribavirin (800mg). Sure I have the afternoon waves of lethargy, moments of zoning off into Neverland, but overall, everything can easily be managed with drinking lots of water, eating right, and taking my Ibuprofen as needed. I give credit for all of this to God in Heaven. Truly He's looking over me during this whole treatment process, and I know for sure His Mighty hand is orchestrating this entire journey to mold me into something far more greater. It's time for the Slayers to awake, it's time for our dragons to die, it's time for lambs to become lions and lead the pack. We're on the cusp of this exciting new era in liver treatment, and I for one don't fail to give God all His rightful deserved glory daily!
I thought I'd never hear the words Hepatitis C and cure uttered in the same breath, but truly these are remarkable times we're living in. Stay fruitful, and strive 2 thrive in everything you do daily! #IStrive2Thrive