Been an awesome last day of February in Central Florida today folks. Been outside most of the day trimming trees, doing yard work, mowing the lawn, weed cutting etc... While most of the nation is in cold digits, sunny Florida is in the mid 70's today, and no clouds in sight, all warm sunshine. Feeling humbled, blessed and obedient to my Father's Will for me. God is amazing... But you already knew that right!?
Friday, February 28, 2014
Day 39, Feeling Fresh
Been an awesome last day of February in Central Florida today folks. Been outside most of the day trimming trees, doing yard work, mowing the lawn, weed cutting etc... While most of the nation is in cold digits, sunny Florida is in the mid 70's today, and no clouds in sight, all warm sunshine. Feeling humbled, blessed and obedient to my Father's Will for me. God is amazing... But you already knew that right!?
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Wednesday, February 26, 2014
Day 37, HCV Awareness
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Tuesday, February 25, 2014
Day 36, Undetected (Dragon Slain)
After 4 weeks of therapy, it all has come down to this one moment, this breath of fresh air. Waiting patiently in the examination room, I was praying to God, listening to Coldplay's new Midnight track on YouTube and just lifting up God's amazing power.
It was in that moment the rustling of papers at the door distracted my silent moment of worship as my doctor entered the room. Not reading my results yet, we both sat down and first went over my basic CBC and liver functions, all of which are normal range. Then, as my doctor turned to the next page, she chuckled, and just said, "Wow, that's just amazing!" It was that moment that I realized the outcome and the grueling past 5 weeks of therapy have not been in vain, that my dragon was slain, my giant was overcome and the cloud of gloom lifted from my head. No longer do I live in the shadow of the human struggle to fear one's own mortality from complications stemming from HCV. The journey is winding down, 4 and a half months left of therapy, and this beast will be slaughtered into an oblivion.
I am officially undetected of the virus after 4 weeks. That means there is 0% of the Hepatitis C (HCV) in my blood samples. Not only is the is stellar news, but also means that I had a rapid virologic response (RVR) to the therapy, which results in an even more increased chance of cure above the already 92% with just the standard therapy. Click on the image to the right to view the larger version of the actual lab work analysis. The HCV RNA is the virus itself, and the result is showing below 15 copies, which is how far modern day testing can measure to. This is astounding, and the work of a mighty God who is always in control of our lives, regardless of good news or bad. This blood test proves that not only miracles do happen in modern day, but just adds volumes to the power of the living God, and what can be done if one simply surrenders all to Him. I still am not praying for a cure, although there is nothing wrong with that to pray to be cured.
Therapy continues until the duration is complete. My HCV viral load will be checked again at week 12, week 24 (end of therapy) and 6 months post, then one year afterwards. This is not my story, I'm just the vessel, it's all God and his craftsmanship. I am his artwork, his sculpture and painting, likened in His own image. I humbly bow, worshiping Him, glorifying His name. Rest assured, I'm still blogging through the duration of this therapy, documenting my highs, and lows, so I'm not going ANYWHERE! Ya' Here!?
I am officially undetected of the virus after 4 weeks. That means there is 0% of the Hepatitis C (HCV) in my blood samples. Not only is the is stellar news, but also means that I had a rapid virologic response (RVR) to the therapy, which results in an even more increased chance of cure above the already 92% with just the standard therapy. Click on the image to the right to view the larger version of the actual lab work analysis. The HCV RNA is the virus itself, and the result is showing below 15 copies, which is how far modern day testing can measure to. This is astounding, and the work of a mighty God who is always in control of our lives, regardless of good news or bad. This blood test proves that not only miracles do happen in modern day, but just adds volumes to the power of the living God, and what can be done if one simply surrenders all to Him. I still am not praying for a cure, although there is nothing wrong with that to pray to be cured.
Therapy continues until the duration is complete. My HCV viral load will be checked again at week 12, week 24 (end of therapy) and 6 months post, then one year afterwards. This is not my story, I'm just the vessel, it's all God and his craftsmanship. I am his artwork, his sculpture and painting, likened in His own image. I humbly bow, worshiping Him, glorifying His name. Rest assured, I'm still blogging through the duration of this therapy, documenting my highs, and lows, so I'm not going ANYWHERE! Ya' Here!?
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Saturday, February 22, 2014
Day 33, The Head Swim
This update will be short, but I haven't posted in the past few days, because honestly, not much has changed except one minor nuisance. Shortly after taking Ribavirin on a full stomach, I get this odd sensation in my head like I'm in the ocean, or I've been tossed around by a strong wave. That unbalanced feeling in the head followed by a little queasiness in the stomach. It generally only lasts about 30-45 minutes and then eventually slowly fades away. Other than that, just getting by, and waiting for Tuesday when I go to the doctors to get the results of my 4 week viral load. Even though I want it to be undetected, I mentally have to open to any outcome, expected or unexpected. Either way, God is in control, and together, we've already won the battle. So yeah, that's where I'm at mentally on all this. Have a blessed Sunday everyone, and I'll be back soon with my blogging on my Sovaldi and Ribavirin liver treatment.
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Tuesday, February 18, 2014
Day 29, Went In For Labs
As a matter of fact, I keep meticulous medical records of my progress over the past 10 years. I have lab work literally from almost 10 years ago sitting in a drawer in my filing cabinet. I happen to come across this old email that I kept and printed from my liver doctor at the time in Kentucky. I had started therapy in 2006 on May 1st, and went 24 weeks on the old school standard treatment regimen. I wasn't a Rapid Viral Responder (RVR), and around August 14th, 2006 I had labs drawn, 16 weeks later I went undetected. It wasn't until I completed therapy on October 9th that a study was done and results released shortly after stating that I should have went 48 weeks, not 24 weeks. 3 weeks later, I relapsed and the virus came back. It's interesting to go back and see all of this old data, and reflect on the road that I've traveled and all that has changed in my life in the past 8 years to my new therapy today. I've gotten married, with an amazing wife who happens to be an RN at a local hospital, got a wonderful home and roof over my head, an amazing new church that is on fire for Christ, and I've moved to the theme park capitol of the world Orlando, Florida from my old hometown back in the Appalachian Mountains of Kentucky.
So now, we fast forward from 2006, to 2014, 8 years later and a new miracle drug is on the market that is curing over 90% of the HEPC infected community. With an astonishing 92% chance of a cure, this is the treatment, the therapy and the time in my life I've been praying for. I've taken intimate care of my body throughout all these years, abstaining from alcohol, smoking or any form of drug abuse. Honestly, drugs was never even an enticement for me. The worst I ever put in my body was an ice cold Pepsi and some healthy eating along the way. As of today, I've lost a total of 3lbs, some intentional, and I'm sure some from the drug therapy. But my appetite remains hearty, and my side effects at most minimal and manageable. I find out the results from today's lab draw hopefully on Feb. 25th, 1:15PM. This particular lab test sometimes takes up to 10 days for the results to finally come in, so it may be up to the 28th before I'll know if I'm undetected. But honestly, the battle has already been won in my heart and soul, the dragon has been slayed, the sleeping giant has fallen and with Christ by my side, I can overcome and do all things through Him who gives me strength. In my spirit, I know I've already beaten this thing, I just have to get through the bouts of anxiety and the next 5 months to officially claim victory! Victory in Jesus!
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Sunday, February 16, 2014
Day 27, Mood Swings
The wife and I had a romantically enchanted Valentine's Day on Friday night that we both felt very honored to be a part of. Getting seats for Cinderella's Royal Table restaurant inside the Cinderella's Castle at Magic Kingdom is no easy task, but I struck gold and luck when I randomly checked the Disney dining reservations over 6 months ago and found out Disney had an opening at the Royal Table. Even better, it was on Valentine's Day! We were surrounded by 5 Disney princesses including Cinderella, Ariel, Jasmine, Princess Aurora and Snow White. And the food, holy smokes... Was top notch gourmet dining that you could only expect from Disney. The wife and I stayed for Wishes fireworks, and enjoyed several rides around the park before heading out around 11PM. We had a blast.
Saturday was a so-so kind of day. I have noticed some subtle changes in my mood swings and behavior, and even more heartbreaking for me, is that my wife gets the brunt of my Riba-Rage. The smallest of things I seem to snap at, definitely not me. Last night was kind of a reality check when I snapped on something so simple. It's getting a little monotonous, and I am so very blessed to have a loving wife who understands this pain from both sides, as a wife and a registered nurse. My wife has noted that within an hour or so after taking Ribavirin at night, after dinner, I zone out, and become lethargic and desensitized. It only lasts for about an hour, then fades away slowly, but this only occurs if I have a big meal before taking the Ribavirin. The food helps the medication to absorb faster into the bloodstream, so without food is typically a t 45% absorption rate, as with a fatty meal that rate increases to 75-80% of the drug absorption; according to online documentation. I go in for my 4 week viral load check in two days, on Tuesday! So excited for this, because deep down I already know the outcome.
At the end of the day, I am so very blessed people. Even though my head at times is jacked up, and I'm in a fog at nights, in just 5 more months, this fog will be lifted and I will be walking around a new man. God is so immeasurably good, and through the fire and sufferings, we are made whole, pure and shiny. Still drinking 64oz or more of water daily, and my appetite so far hasn't gone away. Before I close, I just want to take this time and thank the one person by my side who has seen my ups and downs while on this medication. My wife, alongside my Lord and Savior Jesus Christ, is literally my rock and shoulder during this whole process. She motivates me, encourages, and at times gets under my skin to get me off my rear end to snap out of my state of lethargy. When you see my wife, you'll understand why, she's just special, and truly a real life angel walking on this green Earth. I do believe in angels, because I was fortunate to marry one.
Saturday was a so-so kind of day. I have noticed some subtle changes in my mood swings and behavior, and even more heartbreaking for me, is that my wife gets the brunt of my Riba-Rage. The smallest of things I seem to snap at, definitely not me. Last night was kind of a reality check when I snapped on something so simple. It's getting a little monotonous, and I am so very blessed to have a loving wife who understands this pain from both sides, as a wife and a registered nurse. My wife has noted that within an hour or so after taking Ribavirin at night, after dinner, I zone out, and become lethargic and desensitized. It only lasts for about an hour, then fades away slowly, but this only occurs if I have a big meal before taking the Ribavirin. The food helps the medication to absorb faster into the bloodstream, so without food is typically a t 45% absorption rate, as with a fatty meal that rate increases to 75-80% of the drug absorption; according to online documentation. I go in for my 4 week viral load check in two days, on Tuesday! So excited for this, because deep down I already know the outcome.
At the end of the day, I am so very blessed people. Even though my head at times is jacked up, and I'm in a fog at nights, in just 5 more months, this fog will be lifted and I will be walking around a new man. God is so immeasurably good, and through the fire and sufferings, we are made whole, pure and shiny. Still drinking 64oz or more of water daily, and my appetite so far hasn't gone away. Before I close, I just want to take this time and thank the one person by my side who has seen my ups and downs while on this medication. My wife, alongside my Lord and Savior Jesus Christ, is literally my rock and shoulder during this whole process. She motivates me, encourages, and at times gets under my skin to get me off my rear end to snap out of my state of lethargy. When you see my wife, you'll understand why, she's just special, and truly a real life angel walking on this green Earth. I do believe in angels, because I was fortunate to marry one.
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Thursday, February 13, 2014
Day 24 of Dragon Slaying
I officially have 4 pills left in bottle #1 of 5 more to go of Sovaldi. Yesterday was a stay at home and rest kind of day. I had a little brain fog and some mild delirium to contend with over the past couple days. On top of that, my wife had to call in sick the past two nights from having mild flu-like symptoms, something she probably picked up working in the hospital. So we've both been kind of giving each other some time to mend, some personal space, because when your body is experiencing flu symptoms, last thing you want is a lot of commotion or annoyances. So, I've been working on the PC the past few days, while she rests, doing some graphic design and pretty much just being a home body with my wife. I also got my second shipment of Sovaldi yesterday from the pharmacy, was encouraging to see on the label I only had 4 more refills, WHEW! I go February 18th for my lab work to see where the virus stands. If I'm undetected by week four, it's called an RVR (Rapid Virological Response) which means I'm a rapid responding patient whose odds just tripled essentially in getting cured of the virus once and for all. Pray for healing, pray for a cure, but above all else, pray for God's perfect will to be utilized to the fullest with my life.
So tomorrow is Valentine's Day, wait, didn't we just celebrate the new year? Wow, the days are just zooming by 100MPH. Alexandra and I have some fun tomorrow, we're dining with royalty. We will be up in the top of Cinderella's Castle tomorrow night for a romantic Valentine's Day dinner for two with the princess herself. Let me just add, not an easy feat being it's Valentine's Day and dinner in Cinderella's Castle. But it's a new experience for us, and we're so excited to be at the Magic Kingdom tomorrow night for romance, fireworks and Disney.
So tomorrow is Valentine's Day, wait, didn't we just celebrate the new year? Wow, the days are just zooming by 100MPH. Alexandra and I have some fun tomorrow, we're dining with royalty. We will be up in the top of Cinderella's Castle tomorrow night for a romantic Valentine's Day dinner for two with the princess herself. Let me just add, not an easy feat being it's Valentine's Day and dinner in Cinderella's Castle. But it's a new experience for us, and we're so excited to be at the Magic Kingdom tomorrow night for romance, fireworks and Disney.
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Tuesday, February 11, 2014
Day 22, CBC Labs Are In
I just came from my 2 week follow up doctor appointment since starting the new HCV liver therapy on Sovaldi and Ribavirin. It is usually a little nerve wrecking sitting in the waiting room all by yourself for the doctor to come in. For me, I've been a magnet for bad luck, bad news and not the best lab work in the world. But in that moment of self doubt, I clasped my hands together, closed my eyes and prayed. I told God, "This is your vessel, your story, you glory and your testimony. Use it God for your kingdom, I am yours." I had a sense of calm come over me, and from then on, I was relaxed and easy going. When I say I was used to bad news, it became somewhat of a routine at my old hospital in Kentucky that my lab work, liver functions and vitals were like riding a roller coaster at Cedar Point. I became jaded and accepting of having abnormal labs, so that's the mentality I am coming from. Believe me, it haunts me every once in a while, but I don't let it get the best of me. Greater is He that is in me, than he that is in the world.
The results are in, and my labs look pretty great. Normal liver function, WBC and Platelets are all normal as well. Pretty astounding how well I am tolerating the treatment this time around as opposed to the last time. Click the image to the left to view the larger scale version in detail. Pretty amazing how well my functions are doing on treatment, and to me, is the standard in which I am now accustomed to receiving, because honestly, that's how my BOSS (God) works and delivers. What more proof does anyone need that we serve an awesome God? I am walking in victory today folks, even though my head is a little foggy and aching, I walk in boldness.
My doctor also informed me that she is expecting me to be fully undetected by week 4. I have the lab sheet here in my hand for next week's "BIG ONE." Next week's labs will show of I'm undetected and if the HepC virus is gone for good, and when it comes back that I am, and I am already in that mentality, than my dragon is pretty much slayed, chopped up into little bitty chunks and thrown into the fire. I go on the 18th to do labs, and then follow up doctor visit on the 25th get the results and check-up. I'm not praying for the cure, I'm praying for the will of God to thrive in my soul and bones.
My doctor also informed me that she is expecting me to be fully undetected by week 4. I have the lab sheet here in my hand for next week's "BIG ONE." Next week's labs will show of I'm undetected and if the HepC virus is gone for good, and when it comes back that I am, and I am already in that mentality, than my dragon is pretty much slayed, chopped up into little bitty chunks and thrown into the fire. I go on the 18th to do labs, and then follow up doctor visit on the 25th get the results and check-up. I'm not praying for the cure, I'm praying for the will of God to thrive in my soul and bones.
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Monday, February 10, 2014
Day 21, Movin' Right Along
Yesterday marked a milestone for me health wise. In an effort to drink more water, and eat healthier, I managed to walk over 7 miles, take over 17K steps, and burn close to 3K calories in one single day! Thanks my FitBit armband, it reminds when to take my medicine, when to drink water, and even monitors calories burned, sleep cycles/patterns and sets up a healthy meal plan for me. I am currently on a 2,200 calorie a day diet, and have a goal to loose 10lbs by Summer. I'm 170 now, and would ideally like to be at 160 for Summer time and bathing suit beach fun. I want all my fellow Heppers out there to know you can be on therapy, feel like crap, but still do things to make your body feel better. Drink lots of water, over 64oz a day throughout the day, and then go take an evening or morning walk to get your heart pumping. Perspiration releases toxins and helps clean up your blood and overall make you feel better. You wouldn't think that, but believe me, it really helps! I felt like crap until I realized I could have been doing things throughout the day while on therapy to remedy many of my symptoms and side effects. And it worked! Less brain fog, cramping, aching, lethargy has dwindled, and I'm feeling fantastical!
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Friday, February 7, 2014
Day 18, Sinus Funk
We've had some pretty drastic weather change over the past two nights here in Central Florida. One day it was 80's, hot and sunny, next day cool and rainy, to now, cold-cloudy-and rainy. Even cold enough to use heat again! This is really playing havoc on my sinus issues, and I've sneezing like nonstop since yesterday afternoon. I guess it's back on my Flonase nasal spray for a couple weeks until the seasons figure out what they're doing exactly. Running and tickling nose, yeah, I know this all too well, allergies!
Aside from sinus trouble, I'm doing very well again today. Woke up fully rested, drinking lots of water today again, and just going day to day on this therapy. The past couple days have been seemingly side effect free. That's the ups and downs with these toxic drug regimens, you never know when the bad days strike. I can't believe it's already Friday! I'm almost at the 3rd week point of therapy, which means 21 more weeks to go. I must say, time is flying by, and that's a good thing. My finger is healing up nicely by the way. Been taking my anti-hemophiliac factor injections which help combat bruising, joint bleeds and keeps my clotting levels at a decent percentile.
For some of you from the HCV community who have no clue what hemophilia is, allow me to give you a brief synopsis. Hemophilia is a chromosome deformity passed from mother to child. It's the passing of this defective chromosome pattern from mother that causes an abnormality in the liver from producing a clotting factor protein called Factor VIII (8). Some hemophiliacs are Factor IX (9) deficient. It's the absence of these clotting proteins that result in a hemophiliac to have severe bleeds, bruising and other joint related complications. It's this deficiency that hemophilia is graded on three scales for the individual hemophiliac. The scales are mild, moderate and severe. Mild hemophiliacs have from 6-49% of clotting factor produced by the liver. Moderate hemophiliacs range from 1-15% of clotting factor protein and generally have mild complications. Severe hemophiliacs have less that 1% clotting protein, which makes them prone to joint bleeds, extended bleeding episodes and permanent joint damage. Hemophilia is treated by injecting a synthetic form of a human plasma derivative known as anti-hemophiliac factor XIII concentrate. It's this concentrate that severe hemophiliacs often must inject themselves in their own veins up to 3 times a week. I am a severe hemophiliac, and must inject 3 times weekly. This weekly injection therapy is known as "prophylactic hemophilia therapy." It's goal is to minimize episodes and keep clotting levels above 1% throughout the whole week. Below is a video I made last year on a vlog I done for a year. It shows the routine many hemophiliacs must do 3 times a week. Hope this helps!
Aside from sinus trouble, I'm doing very well again today. Woke up fully rested, drinking lots of water today again, and just going day to day on this therapy. The past couple days have been seemingly side effect free. That's the ups and downs with these toxic drug regimens, you never know when the bad days strike. I can't believe it's already Friday! I'm almost at the 3rd week point of therapy, which means 21 more weeks to go. I must say, time is flying by, and that's a good thing. My finger is healing up nicely by the way. Been taking my anti-hemophiliac factor injections which help combat bruising, joint bleeds and keeps my clotting levels at a decent percentile.
For some of you from the HCV community who have no clue what hemophilia is, allow me to give you a brief synopsis. Hemophilia is a chromosome deformity passed from mother to child. It's the passing of this defective chromosome pattern from mother that causes an abnormality in the liver from producing a clotting factor protein called Factor VIII (8). Some hemophiliacs are Factor IX (9) deficient. It's the absence of these clotting proteins that result in a hemophiliac to have severe bleeds, bruising and other joint related complications. It's this deficiency that hemophilia is graded on three scales for the individual hemophiliac. The scales are mild, moderate and severe. Mild hemophiliacs have from 6-49% of clotting factor produced by the liver. Moderate hemophiliacs range from 1-15% of clotting factor protein and generally have mild complications. Severe hemophiliacs have less that 1% clotting protein, which makes them prone to joint bleeds, extended bleeding episodes and permanent joint damage. Hemophilia is treated by injecting a synthetic form of a human plasma derivative known as anti-hemophiliac factor XIII concentrate. It's this concentrate that severe hemophiliacs often must inject themselves in their own veins up to 3 times a week. I am a severe hemophiliac, and must inject 3 times weekly. This weekly injection therapy is known as "prophylactic hemophilia therapy." It's goal is to minimize episodes and keep clotting levels above 1% throughout the whole week. Below is a video I made last year on a vlog I done for a year. It shows the routine many hemophiliacs must do 3 times a week. Hope this helps!
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Thursday, February 6, 2014
Day 17, Fog Has Lifted
The thing about these kinds of therapies for treating HCV is the roller coaster ride of emotions, feelings and side effects that one must endure. Yesterday was a "not-so-fresh" kind of day for me, as I woke up with a headache, feeling icky and my smashed finger throbbing from pain and keeping me awake all night. But today, it's a little different, I woke up fully rested with over 8 hours of sleep last night, and I feel refreshed. Another thing I've started doing is documenting my water intake, daily calories and activities via the FitBit Force wrist pedometer. Something I've always intended to do, but fail on a daily basis is drinking 64 ounces or more of water, especially now given the daily medication therapy I'm on, I need to flush my system and stay hydrated. I recently found out from my online HCV/Sovaldi support group, that Ribavirin alone will dehydrate your body, so that may have been why I was feeling jacked up over the weekend, I wasn't drinking fluids properly. So now, I've made it a personal goal to drink 64 ounces of water a day during therapy, and hopefully continue that habit after therapy ends in July. If you're on FitBit, add me, Here is my Profile Link.
So, yeah, feeling much better today, looking forward to 4 days with my lovely wife over the weekend. I hear murmurs of Disney or Universal Studios in my distant future calling (or both). It will be nice to be in the parks again, walking, getting exercise and enjoying fresh air and a day in the theme park capitol of the world, Orlando. Continue to pray for me, continue to comment, send me messages, it really does help knowing I have an army of dragon slayers by my side, and we're all slaying these beasts together.
Before I go for the day, I want to leave you with this text my best friend and Christian mentor, John Durham, said to me yesterday that really lifted me up. He said, "I know right now you're going through a lot of pain, intensity and a lot of questions out there with this new medication. Often sometimes, we have to be refined in the fire to truly appreciate the change that God is making in our lives. Just remember, when you come out of this thing, you'll be shining like a diamond brother. Strap on your armor and ready yourselves!" It seems no matter what we face, the fire refines us, molds us, and when we come out victorious. The scars are healed, the wounds may have been deep, but we're better men/women because we've fought the good fight, and surely we've kept the faith as Apostle Paul once so eloquently put it.
Another person that reached out to me and stepped up yesterday was another best friend, Arnie Davidson, I honestly don't know what I'd do without this brother. My dryer was broken, and he came over to my house, sweat like mad crazy in the Florida humidity and fixed my dryer. Turns out the belt and bolt vibrated off the blower, simple 10 minute fix. But I can't lift and move heavy machinery from long term injuries of having severe hemophilia. Not only did Arnie fix it, but once again, he lived the example of what I strive to be, and that's a Christian brother helping others out in time of need. I feel so incredibly blessed today people. You have no idea.
Thanks John and Arnie! It's awesome to know we fight in this battle together, and with God's grace, mercy and healing, we'll slay this dragon once and for all! Remember, I'm not praying for a cure, I'm praying for God's Will, big difference.
So, yeah, feeling much better today, looking forward to 4 days with my lovely wife over the weekend. I hear murmurs of Disney or Universal Studios in my distant future calling (or both). It will be nice to be in the parks again, walking, getting exercise and enjoying fresh air and a day in the theme park capitol of the world, Orlando. Continue to pray for me, continue to comment, send me messages, it really does help knowing I have an army of dragon slayers by my side, and we're all slaying these beasts together.
Before I go for the day, I want to leave you with this text my best friend and Christian mentor, John Durham, said to me yesterday that really lifted me up. He said, "I know right now you're going through a lot of pain, intensity and a lot of questions out there with this new medication. Often sometimes, we have to be refined in the fire to truly appreciate the change that God is making in our lives. Just remember, when you come out of this thing, you'll be shining like a diamond brother. Strap on your armor and ready yourselves!" It seems no matter what we face, the fire refines us, molds us, and when we come out victorious. The scars are healed, the wounds may have been deep, but we're better men/women because we've fought the good fight, and surely we've kept the faith as Apostle Paul once so eloquently put it.
Another person that reached out to me and stepped up yesterday was another best friend, Arnie Davidson, I honestly don't know what I'd do without this brother. My dryer was broken, and he came over to my house, sweat like mad crazy in the Florida humidity and fixed my dryer. Turns out the belt and bolt vibrated off the blower, simple 10 minute fix. But I can't lift and move heavy machinery from long term injuries of having severe hemophilia. Not only did Arnie fix it, but once again, he lived the example of what I strive to be, and that's a Christian brother helping others out in time of need. I feel so incredibly blessed today people. You have no idea.
Thanks John and Arnie! It's awesome to know we fight in this battle together, and with God's grace, mercy and healing, we'll slay this dragon once and for all! Remember, I'm not praying for a cure, I'm praying for God's Will, big difference.
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Wednesday, February 5, 2014
Day 16, Side Effect Hell
Well, since Saturday, I've slowly been coping with the side effects of this medicine, but have noticed an overall change in myself mentally. I'm not depressed or anything, but am suffering lack of sleep. Since Saturday night, I've only been getting about 3-4 hours sleep a night. My head won't stop pounding, and to top it off Riba-Rage is in full effect. Even my wife has noticed changes in my mood, behavior and overall mental state. These drugs are heavy duty, powerful stuff, and I sometimes forget their dragon slaying capability and the repercussions that come from being on therapy. So yeah, my head is jacked up. The back of my head is throbbing again, and I woke up with a very bad headache. Sensitive to light, noise etc... On top of that, I can't think clearly. And I'm going to be real and open for a minute, which is hard for me to be transparent, but I've caught myself being harsh to my wife a couple times. This is definitely not me. Anyone that knows me and my wife, realizes we are like two peas in a pod. This Riba-Rage is really getting on my nerves, but thankfully my wife understands the issue and helps me cope.
To make matters worse, I had a little melt down last night. I was doing laundry, and noticed water pooling under my dryer. By system of debunking the issue, I found that it wasn't blowing air at all, hence the water pooling. In the process of trying to slide the dryer back to have a look at the duct work, I smashed my finger on the door handle by the garage door. my whole nail is purple, and kept me up all night throbbing with every single beat of my heart. My pain endorphins kept me awake most of the night, tossing and turning and grasping my hand to relieve pressure. Being a hemophiliac didn't make matters any better either. So despite being very angry, in a fog, can't think clear, lashing out from Riba-Rage and this other nonsense, I'm going into day 16, another day of meds, another day of rage, another day of sleeplessness, another day of side effects. No one said that this would be easy...
To make matters worse, I had a little melt down last night. I was doing laundry, and noticed water pooling under my dryer. By system of debunking the issue, I found that it wasn't blowing air at all, hence the water pooling. In the process of trying to slide the dryer back to have a look at the duct work, I smashed my finger on the door handle by the garage door. my whole nail is purple, and kept me up all night throbbing with every single beat of my heart. My pain endorphins kept me awake most of the night, tossing and turning and grasping my hand to relieve pressure. Being a hemophiliac didn't make matters any better either. So despite being very angry, in a fog, can't think clear, lashing out from Riba-Rage and this other nonsense, I'm going into day 16, another day of meds, another day of rage, another day of sleeplessness, another day of side effects. No one said that this would be easy...
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Monday, February 3, 2014
Day 14, The In Between
Day 14 - I woke up this morning feeling a bit off someway in the body. Upon getting out of bed and getting vertical, the symptoms became more and more prominent, I was very nauseous. Having to take my Ribavirin this morning, I was in a dilemma, one of which had only but one solution, take the meds regardless. Forcing myself to eat a granola bar and some string cheese, I took my morning dose of 400mg Ribavirin, and within 20 minutes the nausea intensified to the point that if I were to cough or blow my nose the wrong way, it could trigger a regurgitation response. It was then I remembered from a previous ER visit of having kidney stones back last Summer, I was prescribed Zofran 4mg tablet, which is to counteract the nausea. I took it without hesitating. GOOD MOVE! Within minutes, I started getting relief, and the symptoms dwindled away slowly.
So I called my doctor who assigned me to this new HCV therapy with Sovaldi, and she sent my pharmacy a prescription for Zofran with 2 more refills to help get me through those rough, upset stomach mornings to keep from throwing up my medication. It has to stay in me, it has to dissolve, it has to absorb... PERIOD! Within a half hour the pharmacy called back, and my anti-nausea tablets were ready for pick-up. What a blessing this was. I am very lucky to have such quick response with my doctor during therapy, and even more so blessed to even be on therapy in the first place.
Today marked day 14, and pill 14 of therapy, so two weeks exactly (22 more weeks to go). It was the day to go in and get labs drawn, which was a basic CBC panel to monitor white blood cells (WBC) counts. This lets the doctor understand how the Ribavirin is affecting my immune system. Upon arriving this morning at my local lab, I met a lady who I have interacted with before during a previous blood draw, her name was Deborah. She is the sweetest, most darling older black woman in the world. She asked me, "How ya doing today Joe?" In to which my reply is always, "Too blessed to be stressed." She laughed out loud and said, "Hallelujah!" A five minute lab draw turned into a 25 minute conversation about Jesus Christ, how blessed we are, and how amazing God is. God put Deborah in my life to pick me up, from my down points from the weekend of side effect hell I had. My Boss is like that, puts people in our paths, shows up at the random times, right when we need a boost, right when need a hand and right when we're weak physically and mentally. God is so good guys. It's amazing what a little faith, hope and God's grace can do for the soul. I go next Tuesday, February 11th, to follow up with my doctor and get the results of my lab work drawn today. Until then, every day, every dose, every pill. God Bless!
So I called my doctor who assigned me to this new HCV therapy with Sovaldi, and she sent my pharmacy a prescription for Zofran with 2 more refills to help get me through those rough, upset stomach mornings to keep from throwing up my medication. It has to stay in me, it has to dissolve, it has to absorb... PERIOD! Within a half hour the pharmacy called back, and my anti-nausea tablets were ready for pick-up. What a blessing this was. I am very lucky to have such quick response with my doctor during therapy, and even more so blessed to even be on therapy in the first place.
Today marked day 14, and pill 14 of therapy, so two weeks exactly (22 more weeks to go). It was the day to go in and get labs drawn, which was a basic CBC panel to monitor white blood cells (WBC) counts. This lets the doctor understand how the Ribavirin is affecting my immune system. Upon arriving this morning at my local lab, I met a lady who I have interacted with before during a previous blood draw, her name was Deborah. She is the sweetest, most darling older black woman in the world. She asked me, "How ya doing today Joe?" In to which my reply is always, "Too blessed to be stressed." She laughed out loud and said, "Hallelujah!" A five minute lab draw turned into a 25 minute conversation about Jesus Christ, how blessed we are, and how amazing God is. God put Deborah in my life to pick me up, from my down points from the weekend of side effect hell I had. My Boss is like that, puts people in our paths, shows up at the random times, right when we need a boost, right when need a hand and right when we're weak physically and mentally. God is so good guys. It's amazing what a little faith, hope and God's grace can do for the soul. I go next Tuesday, February 11th, to follow up with my doctor and get the results of my lab work drawn today. Until then, every day, every dose, every pill. God Bless!
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Sunday, February 2, 2014
Day 13, Riba Rage
I've pretty much narrowed down my side effects to the taking of Ribavirin. Sovaldi by itself isn't causing me any sort of side effects after taking the daily pill, but I have noticed within an hour of Ribavirin, the effects enhance tremendously. There was a saying back in 2006 when I took therapy with Interferon and Ribavirin from a message board support group I was involved with. That saying is "Riba Rage." It fit so well with side effects, and how up and down the drug can cause one to feel. So, I'm resurrecting this old term, and saying that my RibaRage has returned, and my head is stuck somewhere in the clouds.... "Pretty bird..." That was a silly Dumb & Dumber reference, but seriously, I can feel the ups and downs of this drug in my system after taking it. The more fattier meal I eat, the more severe and harsher the side effects manifest. Side effects for me at this moment include brain fog, dizziness, lethargy, chills, sweats, muscle cramps and stomach ickyness. One side effect drives me bonkers, often after taking the pills-AM/PM-I get this feeling in the back of my head like pressure, followed by a sense of wanting to faint, but not fainting, a sense of light headedness. I just knuckle down, and endure. No one said slaying a dragon was going to be a walk in the park, but with all victory comes a season of suffering.
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Side Effects
Small update at midnight. After taking Ribavirin tonight, I started really feeling like crap. My head feels different, and so does my body. I feel slightly dizzy, light headed, had a small episodes of chills and now I have a moderate headache on top of waves do lethargy. I'm heading to bed, and hoping to sleep it off. I was having some acid reflux earlier in the week, but now this vertigo feeling is throwing me off. It almost feels like I want to black out, but don't quite get that extreme. It's an odd feeling to describe for sure.
It's times like tonight, I'm reminded that with victory, comes suffering. No war is won; no battle is progressed without some form of adversary and enduring.
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Saturday, February 1, 2014
Day 12, And Doing Well
I haven't posted in a couple days, mainly in part because I honestly haven't noticed any changes in my therapy in terms of side effects and the way I feel. I do, however, notice at certain times for periods of about 25-30 minutes in the early afternoon around 3:30PM I get a wave of lethargy that hits me. I typically eat really light lunches and breakfasts, so nothing too heavy like pastas or breads. The lethargy is just the same as a sugar crash, that half hour of just, UGH, BLAH & BLEH! The heartburn has seemed to dwindle down a substantial bit, nothing like it was a few nights ago thank God! Nothing like lying down in bed and the acid so bad in your stomach that the back of your throat is on fire and burning. ICK! All in all, I can determine if heartburn and lethargy are related at all to Sovaldi or Ribavirin, but hey, if that's all the side effects that manifest, than it's a piece of cake!
I have to leave you all with this video I found on YouTube of a girl getting her first lab work drawn and being stuck with a needle. I have never in my life seen a teenager act like this over a stupid needle. Mind you, that comment is coming from someone who injects himself into his veins 3 times a week with a butterfly hypodermic needle. I'm just rolling my eyes and thinking in the back of my head, "Really?" I'm not judging anyone, but this gal has a lot more to cry about in today's world than a stinking needle. I am not sure is this young lady suffers any form of mental illness, but in the case she doesn't, REALLY!?
I have to leave you all with this video I found on YouTube of a girl getting her first lab work drawn and being stuck with a needle. I have never in my life seen a teenager act like this over a stupid needle. Mind you, that comment is coming from someone who injects himself into his veins 3 times a week with a butterfly hypodermic needle. I'm just rolling my eyes and thinking in the back of my head, "Really?" I'm not judging anyone, but this gal has a lot more to cry about in today's world than a stinking needle. I am not sure is this young lady suffers any form of mental illness, but in the case she doesn't, REALLY!?
Labels:
cure,
dragon slayer,
HCV,
HCV Awareness,
Hemophilia,
HEP,
Hepatitis C,
HEPC,
HIV,
IStrive2Thrive,
liver disease,
liver treatment,
Ribavirin,
Sovaldi,
vlog
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