[Bobcat] “I’ve been looking forward to this.” [Racoon] “My powers have doubled since we last met!”

The duel continues at the ranch when these two foes face off in front of the motion detection camera.  I thought it was pretty cool to see these animals mingling at the feeder, especially the bobcat.

I would encourage you to get in touch with the Lone Star Chapter in Houston or the Texas Central chapter in Dallas about going next year and it is very enlightening. Nothing earth shattering happened this year but just talking about hemophilia to all your state representative is not a bad idea. I will keep you up to date when more important news comes out about the insurance exchanges come down towards the end of the year.

The one thing that we did lobby for is having them change the Hemophilia Assistance Program from giving 25,000 worth of factor to allowing them to pay for insurance premiums. We will see what happens and I will post as soon as it is approved if it is.

With the development of new factor products that will eventually be available to the community, there are many surveys that are held throughout the year.

The online surveys, which usually range between 30-minutes to an hour to complete, with the compensation range from $50.00 to $125.00, are conducted by market research firms.

These research firms often contact Tribeca for assistance with recruitment.  However, no personal information is supplied to these companies.  All personal information remains in a secure database with Tribeca.

If you would like the opportunity to participate in these surveys, please contact Shad Olsen at: sas@tribecacom.com, or call 212-868-5577.  We look forward to hearing from you.

Bleeds were very common, in the 1970’s when I grew up.  The reason for that was that most people did not have access to factor, and many did not have the capability to use factor or Cryoprecipitate at home.  However, even today, there are many reasons why adult and pediatric patients are still experiencing ongoing bleeds and joint damage, including: inhibitors, spontaneous joint bleeding and bleeding that is hard to control.  Another reason may be that people do not understand their factor half-life.  By understanding half-life you may cut back on the number of bleeds you have per year, and thus protect your joints even more.  It is very damaging to keep bleeding into a joint over time, and this is something that can be either cut back or prevented almost altogether.

The main goal in managing your or your child’s hemophilia should be this: prevent joint damage!  You want to stop recurrent bleeding in joints at all cost, end of story!  If you do not, you will destroy your joints since blood in the joints will keep damaging them.  Blood is supposed to stay in the veins, and synovial fluid is supposed to be in the joint space making them move smoothly.  I have a bad ankle due to lots of bleeds when I was a kid because I wasn’t able to do prophylaxis, and I continue to suffer from it.  Today, however, I am very active so the only way I can stay in shape and prevent bleeds is to be on a very rigorous prophylaxis schedule, of every other day infusions, so that I always have some factor in me.

This brings us to the title of our article- understanding the half-life of factor.  Many people do not fully understand half-life.  The problem with factor eight and nine is that they have very short half-lives.  For most people with a factor eight deficiency, the half-life is an average of 12 hours.  This, of course, depends on the patient’s body and the brand of factor being used, but for argument’s sake, let’s just stay with the average, a 12 hour half-life.   To figure the half-life: when you infuse to get up to a 40% factor 8 level, just cut that level in half every 12 hours. So, by 48 hours, most people would have around 2.5% factor 8 or less left in their bodies. 

Basically, when you infuse, you are trying to turn yourself into a person with mild hemophilia, and most people with mild hemophilia do not bleed, and they often can live more normal lives. Often times, people will tell me they are dosing with factor only once or twice a week, which leaves them unprotected for a lot of the week. 

Factor nine is about the same as factor 8, but it has about a 16 hour half-life.  So, most factor 9 patients need to infuse about every three days. 

The main point of this article is to get you to examine your infusion schedule, which will help you minimize joint bleeds.  For me, it’s prophylaxis.  You should talk to your doctor to make sure you are on the right plan to keep joint bleeds to a minimum.  In most cases, every time you have a bleed into a joint, you are doing more damage, so learn your half-life and infuse accordingly!  Let’s keep joint bleeds to a minimum and reduce or stop joint damage all together. 

Factor 8 Formula:    Dosage Required (IU) = Body Weight (kg) x Desired Factor VIII % Increase (IU/dL or %normal) x 0.5 (IU/kg per IU/dL)

Factor 9 Formula:   Dosage Required (IU) = Body Weight (kg) x Desired Factor IX % Increase (IU/dL or %normal) x 1 IU/kg

Precious Gifts by Melanie Gable

How is it possible that being violently assaulted and potentially kidnapped by a mad man became a remarkable blessing in my life?  How is it possible that having both legs broken, crushed vertebrae in my lower back, a torn liver, a concussion, and a broken right arm (with arthritis to follow me the rest of my life) could help me become a stronger and more faith filled person? And how is it possible that enduring isolation, fear and extreme pain would help my heart become more compassionate to struggles other people experience?  These are the most precious gifts we receive for becoming survivors!

One day I went out for an afternoon jog.  An early-release,  convicted felon,  sitting in his truck, decided I’d be his next victim.  He had tried to get another woman in town earlier that day, but was unsuccessful.  Once I entered the neighborhood  and he noticed me, I became his mark.  He circled the neighborhood once before driving his Ford F150 truck up the curb, onto the grass to smash into my body at full speed.  I rode on the hood of the truck 20 feet before he hit the brakes, sending my body in the air like a rag doll, smashing to the concrete.  He then parked his truck near me and walked up saying, “I’m not leaving you here…you’re my evidence.” Throwing swings with my arms and screaming as loudly as I could brought no one to my aid.  The assailant and I fought in the street for what seemed hours.  As he forced me into the truck, terror overtook my mind, and I screamed, “God, help me now!”  Instantly, the entire neighborhood ran towards the vehicle.  I saw people through the windows coming to help me.  The perpetrator let go, and I safely fell to the ground in the arms of a man I had never met, surrounded by other strangers.

What unfolded over the next year was a series of surgeries, daily physical therapy sessions, relearning life skills (bathing, toilet, etc. with my left arm…the only limb not in a cast), counseling appointments, police interviews, court appearances, and rehab in every direction of my life.  Since I had only been married a year, the profound impact on my husband’s life was immeasurable.  Mike and I were in a crisis that was way over our heads, and we were near financial ruin, as the medical bills continuously streamed in.  The doctors were certain I would limp the rest of my life, and carrying a baby to term was highly unlikely. The sadness, stress, fear and isolation were crippling.  We both knew this was a nightmare we might not survive together.  It seemed to us that there was no hope in our lives.

And yet, small obstacles were slowly overcome each day.  Family, friends and the community surrounded us with amazing support and love.  Every single need we had (whether it be large or small) was delivered, such as groceries, mowed yard, drives to physical therapy, financial support, free physical therapy and surgeries, emotional support, and the list went on and on.  Every prayer request was answered.  And sometimes we didn’t know what to ask for, but the needed assistance was given.  It was overwhelming to see how everyone wanted to help us survive.  And most importantly, Mike and I began to creatively figure out new ways to do things.  For the first time in our lives we had to “dig deep” within ourselves to find patience, peace, forgiveness, ingenuity and strength.  The challenges that were placed before us forced us to become stronger people, respectful partners, and more faithful servants.  And we had to learn to trust others and  especially to trust God.

The love and support we were given changed my heart and helped heal my body, marriage and spirit.  The unselfish generosity of strangers allowed me to heal so completely that now I speak to audiences around the country (sometimes my husband and our son and daughter travel with me!), sharing the differences we can make in the lives of others.  I remind people that adversity presents an opportunity to gain great wisdom and revelation, and that desperate circumstances are a gateway to living in excellence.  Only through adversity will we understand what our realm of influence is, whether it be surviving our own pain or helping others who are suffering.  Pain is the gift that nobody wants.

So how is it possible that one man knocked me down so badly, and I survived, and later thrived?  It is because 1000s picked me up, and God answered my initial plea abundantly.

Will Barry be riding through your state? If so, celebrate or ride partway with him! Or, follow along with Barry on Facebook as he videotapes his ride. (By “joining” this event, you will be able to follow along with Barry’s ride. This does NOT mean you are “joining” him on his ride.)

To help support Barry with this great cause, donate now. We have already raised $19,000 but still need to raise $31,000 more to reach our goal of $50,000.

Save One Life is an international nonprofit, founded by Laurie Kelley that provides direct financial aid to impoverished people with bleeding disorders in 10 developing countries. For more information about Save One Life, go to www.saveonelife.net.

Barry Haarde’s ride is sponsored by Baxter

My wife Patti and I have a 5 1/2 year old son who is very active and “all boy all of the time,” if you know what I mean!   We were looking for some type of sport that our son would love but one that would also teach him to focus his energy and to have more self-control.  We found the perfect match in Taekwondo.

Keeton has been doing “Tiny Tigers” Taekwondo with ATA in Carrollton, Texas and just loves it!  Ever since he was able, Keeton has always liked working out with daddy doing all kinds of exercises.  So, although he might be little, he can do a lot.  As a kid most forms of exercise are just typical “playing.”  Keeton loves running and biking but also does things to help build his upper body like swimming, rope climbing (as another article talks about), and the monkey bars.  All these conditioning and strengthen activities are great at helping any kid with or without hemophilia.  But, Taekwondo adds a mental element to help kids focus and produce something concrete with all of their energy.

In the hemophilia community, we know several families whose kids with hemophilia also do Taekwondo and love it.  In one of the families the mom even started taking Taekwondo with her two sons.  So, Taekwondo is definitely a family sport!  My wife and I both have been talking about joining Keeton in the next couple of months as he moves up from Tiny Tigers.  So, whether you are a child or an adult, living with or without hemophilia, Taekwondo is really a sport that can offer so many benefits physically and mentally, but can also be used to build stronger inner-family relationships.

When I was a kid growing up with hemophilia, I never could really play sports so I sometimes feel at a disadvantage playing sports with my son Keeton.  I began looking for something I could do with Keeton and I feel like I can do this and enjoy it.  I know for most of us adults with hemophilia, it depends on how good our joints are to begin with, whether or not we can even attempt a sport like Taekwondo.   So, as always make sure you consult with your doctor or treatment center before starting an activity like this.  As I started getting interested in taking Taekwondo with Keeton, I asked the instructor how hard it would be on my joints and he said that I could go a long way before I ever had to really do anything hard on my body like breaking boards.  This is definitely a sport my son and I can do together, and we will also learn other things along the way like some great self-defense moves.  I definitely want my son to be able to protect himself if he ever needs to, and believe me if there was ever a time when he might be abducted, kidnappers would run from Keeton!

The issue of getting your child with hemophilia into some type of sport that will allow him to succeed but not be too dangerous is really the same as it is with someone like me who has hemophilia and is trying to get their son into some type of sport.  I want my son to succeed, but it is hard because I never played sports and really do not understand all of the aspects of them.  I want to teach my son passion for sports as well as life, and also teach him to just play. It is also very easy to do at your own pace. That is why we love Taekwondo!  The thing we love about it is that we can take Keeton as many times a week as he wants to go and slow down the next week if we are busy doing something else; you can’t do that with most other sports.  I cannot tell you how good he has become at it and believe me, these instructors do not put up with any horse play when they are working on their form.  Taekwondo teaches kids lots of things like respect, honor, control and great motor skills that will also help them in any other sport they might play.  Give Taekwondo a try, you may love it too.

MicroHealth is basically a new way for patients like you and me to log our infusions from our phone, but also share them electronically with our healthcare providers and family members through a private social health network. I’m a huge fan of social media, constantly creating a posting content on Facebook and Twitter. But there are some things that are simply too private to share on a public social network. That’s why I helped create MicroHealth. I want to share my health info through something as simple as a social network with my doctors, nurses, and family members, so this just seemed to work perfectly.

The history of how MicroHealth started is pretty long. I met my friend Marc for the first time about 3 years ago at a hemophilia meeting in Florida.  At the time, he was a researcher at Columbia University studying “mobile health”. Basically, how to use your phone to improve your health. We quickly got along because we both lived in NYC. I was getting my undergraduate at The King’s College at the time. We made it a point to meet up in NYC and I ended up helping him in some of his ventures with Columbia in the mobile health field. Fast-forward a couple years and he was finally ready to take what he had been studying as a researcher into the real business world. He had joined forces with his brother, who’s a brilliant businessman, and they asked if I’d like to come along for the ride. Obviously, I said yes. Our first and foremost goal: create the absolute best hemophilia logging system that works on all phones, while automatically syncing with your computer, and has a social network built into it, while maintaining strict privacy guidelines. I think we’re pretty close!

For the past few months we’ve been in a private beta, letting patients in the hemophilia community try it out. So far we’ve had really great results. It seems like people find it very easy to use and they’re increasing adherence to their medication because they’re always reminded on time to infuse with a simple text message. Once we finish all the updates, we’ll release it to the entire community.

I’m just happy to be a part of something so new and truly beneficial for the community. And as we begin to let more people use it gradually over time, I’m excited to see how the community embraces it. It makes me wish that I had something like this growing up, back when I was selling my Halloween candy and attending hemophilia camp.

If anyone reading this would like to join our private beta, they are more than welcome to. Simply email me at aaron@microhealth.org. It is and will always be free!

Washington Days 2012 was held from March 8-9 of this year. What is Washington Days? It is an event that NHF puts on every year that is de-signed to get people in the bleeding disorders community to Capitol Hill to raise awareness of bleeding disorders and the issues that affect us. Most chapters send one to two people to represent their state, and if you have not ever done this, I would encourage you to go. It is one of the most empowering things I have ever been a part of. If we do not let our representatives know about hemophilia, how will they learn what we need? As I say a lot, I believe Hemophilia is one of the greatest gifts I was ever given, because there are so many things like this that I have been able to be a part of.

This year, our group, had a young man from San Antonio, named Patrick, with us. He is only 22 years old, and as I told Patrick, very few people his age have ever had the opportunity to experience something like this. Just think how much this will mature him and maybe even give him a kick start into his professional career. Parents, please get your kids involved and you will see them excel like never before with so many of the things they can do in the hemophilia community.

So, what did we lobby for this year? Because it is election year, it was pretty quiet compared to other years. This year we monitored several items in the healthcare reform act that, if it is somehow repealed, would affect or jeopardized things we have fought for. We talked about things like lifetime caps, preexisting conditions being exempt, the age 26 law (which says kids can stay on their parent’s policy until age 26) and the po-tential of an exchange insurance system in 2014, which is supposed to make it easier for people with a chronic disorders to obtain insurance. The good news that we heard from all of our appointments was that the things we really need, both parties agree on. So, I do not think the things we have gained from healthcare reform will go away! The Supreme Court is now debating about whether the Individual Mandate portion of the act is constitutional or not, and that will determine a lot of how healthcare reform matures into more of a reality.

Now we citizens will just have to wait, because they will not be making a ruling until June at the earliest. Why is this Individual Mandate so con-troversial? Well, a lot of people just do not like the idea of the government telling them that they have to purchase anything. But, the simple fact is that the government already tells us what we have to do in many areas of our lives. Whether you are against being forced to buy insurance or not, you must agree something has to be done or we will never get this insurance problem fixed. Right now we need more people buying insur-ance plans so that it will spread the risk and keep premiums affordable. But, what is happening is there are a lot of young people (between 21-30) that are “healthy” that are not buying insurance. Yes, there are people that indeed cannot afford insurance, but many of the young people can afford it, but instead choose to buy other wants…like a nice car, trendy clothes or the latest must have tech toy. They do not want to make the necessary sacrifices it would take to buy insurance. But what people do not understand is that everyone, with or without insurance, gets treated at the emergency room…so, who ends up paying for those that do not have insurance? People with insurance do. Especially, people like you and I that have to pay very high insurance premiums due to our bleeding disorder…we end up paying for the people that choose not to b

uy health insurance at all. They just “risk it” and hope that if something happens the hospital and/or government will take care of them. It is like buying homeowners insurance, you might pay for it for 25 years before ever needing to use it, but when you do need it, it is there. The more people who buy insurance, the more affordable it is. You c

ould also compare it to states forcing you to buy auto insurance to drive your car. Some say if you don’t want to buy car insurance then do not buy a car, so, if you do not want to buy health insurance do not expect to be accept-ed at the emergency room. Honestly, it is pretty hard to live in most cities in the U.S. without a car and it is pretty hard to just live without some day needing hospital care too.

Hopefully, this information was helpful to you, and I implore you to at least once go to Washington D.C. or at least your state capital and learn how

our political system works. It will make you feel much more a part of the system that governs you and if you ever need some big help with the state department or U.S. government, you will at least know where to start. I will keep you up to date on what is going on with Healthcare Reform, so stay tuned and live well!!

Andy

December 30, 2012

Well, I have been very bad about keep up this post but really once you are on this therapy and it has cleared the virus and you are past most of the bad symptoms, there is not much to post.  The day of or after my shots got better and sometimes were kind of bad but sometimes just very sleepy about the afternoon of the shot.

Well, now I do have some news.  About 6 weeks ago my doctor called me in and told me that I was his first failure to the triple therapy.  What is weird is I am his healthiest, and the only with all three H’s:  Hemophilia, Hep c and HIV.  Not sure what to think but he is going to do a endoscopy to makes sure I do not have esophageal Varices (which is basically blood vessels coming to the top of your esophagus), which would indicate my liver is getter worse.  He really does not think I will but wants to check it for sure.  After that, he wants to try something that is not normally done and retreat.  Nobody has really done it to my knowledge, so go trying to ask someone and they will tell you that they just do not know.   My opinion is and I think his too, the longer he can keep my liver virus free, the better.  I would soon be on the therapy for ever if it would starve off the hep-c but know that is not an option. 

All my labs are really fine other than my hep c is back up to about 500,000 copies but no other symptoms.  I do have some ongoing numbness going on in my left hand but it is really in both hands and think it is related to carpal tunnel but have not even thought about that lately.  My left foot goes to sleep some times when I am biking but not bad.  We will see but not sure if is just getting old or what.

I will update you more once I get the procedure and see if it is even a possibility.  If I do retreat, I can handle it and now I know what to expect.  Trying to keep up beat and really stay in shape and really do a lot more biking with my son on our trail a bike and things that do not put as much stress on my joints.  Keep reading and I promise I will update because this will be pretty un heard of info since not many co infected are ever treated in the first place.  If you are on therapy, don’t sweat it and things will get better and it most likely will get work on you and does for most people.  Think God is just testing me and boy is he.  Take care and I hope this can be helpful to you!!!

March 3^rd, 2012

Well guys, my PA said I need to be more positive and try not to scare anyone and that is really my objective.  So, my big positive is I have cleared the virus as of now, which is just awesome, but they do want to keep me the treatment for the full 48 weeks  just to make sure it stays clear.  Now that most of my rash is gone, I think I will be able to ride it out with no problem. I am really glad most of my rash is gone and thank goodness my scratching is almost gone, too.  Now, I just have the occasional minor itching every now and then.  My wife and I are glad most of the skin shedding is about gone, too.  We are very clean people, and although we know we all shed skin every day, we don’t like seeing it all over the place.  And lately we have been seeing it everywhere.  My doctor who is an ID doctor is really happy with my success because there are not a lot of co-infected/hemophiliacs that are on the therapy.  I did scare him a lot with the rash and to make you feel better about going on the therapy, he said neither he nor any of his colleges had ever seen anything this bad.  Lucky ME.  Lastly, I wanted to add that after my Interferon shots on Saturday night, Sunday is getting better also.  Maybe because it’s not as cool any more or maybe I’m just adjusting to the treatment better, but I do not get the chills anymore and I do not really feel as bad. Just a little sleepy on the first day and less on the second, but that is about it.

So, if your doctor has been suggesting this therapy, my advice would be– just do it!!!  What are you waiting for??  If you start now, before you know it three or six months will have gone by and you will be rid of this virus.  I have also gotten back to a normal schedule of working out and trying to get back in the best shape of my life.  I am 46 and my goal is to keep up with my 5 year old son, Keeton, and to continue to keep up with him as he grows, and believe me, it is not easy because he is one active boy. Some of the best times are when Keeton and I get out on my bike with his trail-a-bike attached and we go for a 10 mile ride with Keeton in the back just a peddling a way.  I really think guys or gals, if you want to have a great success with the Hep C therapy; you need to push through this with as much exercise as possible.  I really think you will find it will help a ton.  As you know I have hemophilia and there are things I cannot do like running due to a bad ankle from bleeding, but I can walk a lot and I am an animal on my bike.  So, I want to encourage all of you adult guys with hemophilia, to get in shape!!  Don’t let having bad joints or other problem from hemophilia hold you back from exercising and getting in shape because too many are carrying around a lot of extra weight that is unneeded.  There are so many different options out there if you have some bad joints, like the big exercise balls.  There are so many way to exercise and especially work on your core/abdominal, don’t think many people have ever gotten a bleed from working your abs.

So, until next time, keep your liver clean and healthy and you too can have success!!!!  And hopefully live just as long as anyone else!!

 Feb 1^st 2012

Well, it has been a while since I posted last mainly because, besides the never ending rash, nothing really new has happened.  Let me give you a summary of the last monthor so.  I finished the three month ordeal, Incivek, and luckily they even took me off a week early because I had developed such a bad rash.  I would have to say that my worst side effect from this therapy has been this awful rash.  I still feel a little bad and get the chills a lot the first day after my shot but after that I am basically back to normal.  Now, I’m just taking my shot once a week and my Ribavirin dose was reduced to about 600mg to possibly help completely clear up this rash.  My skin has started shedding like a snake so hopefully the rash is drying up.  I still have a problem with intense itching…I find myself scratching all the time and nothing they tell me to do or take seems to help or stop the itching.  I mean my legs and back are covered with this rash and I find myself almost scratching to the bone.  And that causes the rash to sort of feel like it’s weeping externally and causes little sores that bleed because of all my crazy scratching.  My wife says she has a hard time going to sleep at night because the bed shakes from all the scratching.  I feel like a dog with fleas!!!   It was the worst about three weeks ago, I was even developing a little edema in my legs and that kind of freaked me out.  It almost felt like a bleed into my joint that I have felt due to my hemophilia.  Found out that it was a side effect of the severe reaction I was having.  When they took me off Incivek, it started to dry up but unfortunately withthe severe rash that I got, it’s taking about a month for it to heal.

As it stands now, my rash seems better off the Incivek….but I think there is still some lingering rash from either the Ribavirin or Interferon.  I am not convinced that I will stay on this for a year or not, especially if this crazy itching doesn’t clear up more.  I have cleared the virus but these other two drugs are still pretty tough on you.  My most recent “new” side effect (and it has taking several weeks to start noticing) is my hair is slowly started to fall out.  At first my wife said it looks like I got a bad haircut but as it turns out its just thinning a lot so it looks very different.  In fact I haven’t gotten it cut in weeks and usually I have to get it cut all the time.  I have really thick hair and have never worried about hair loss….they say it will grow back when I get off, but how much will I lose???? 

Jan 10^th 2012

Well, it’s almost been three months and the test results show I have cleared the virus….now, if it will only stay cleared!!  I would recommend this treatment to anyone to clear hep-c.  Honestly, I really don’t feel bad except for the first two days after the shot and then it’s mostly just that first day after.  I’m still able to mountain bike, workout a decent amount and do my normal fast paced lifestyle.

However, they did take me off Incivek a week early due to this rash problem I have.  I don’t want to scare anyone because I do not think my rash is a normal rash. But it’s BAD and it’s just about all over my body and that does make me feel bad.  It’s almost like my skin is peeling off me, probably because I scratch so much….but trust me, you will want to scratch to the bones.  They are hoping it’s viral and if it is, they say it can be treated easily…we’ll see.  My doctor saw me yesterday and he said he hadn’tseen this bad of a rash on any of his hep-c patients.  Again, don’t let my experience scare you into thinking this could be you.  Not sure if you remember, but I had said in an earlier post that the last time I was on therapy with just the two drugs, I had to quit due to the rash and this rash is way worse than the first…probably because I’ve stayed on longer this time.

The plan now will be to hope and pray it is treatable and viral.  If not, they will try to manage it with some type of cream and possibly try to play around with Interferon or Ribiviran.  They have already had me miss the nighttime dose of Ribavirin to only 600mg.  Not sure, but that doesn’t seem to be helping.  So, I’m thinking maybe it’s the Interferon.  Whatever the case, I really don’t think I will be able to stay on this for another 8 months if we cannot get the rash under control.  We will see….but I’m still very pro getting on therapy if you need it and as soon as possible so you can prevent future damage to your liver.  But, if you can wait, sounds like there are more great drugs coming out in the next couple of years.  The best news for me at the moment is that I don’t have to do the 20grams of fat three times a day anymore!!!!   That is a big relief…but I would take that over this rash, any day.  So now I just try to soothe the itching.  I guess I just traded one issue for another…..everything is a trade off.  Still, my best advice on this treatment is to stay in as good of shape as you can because you will do much better when your body is strong!

Here’s some pictures of my rash and again don’t let this scare you…this is not typical but it is what it is!!!!  It started on my right leg so I would say it’s the worst on my leg but then it moved to my back and shoulders and now it’s everywhere…hands, feet, neck…luckily not on my face…yet.

Dec 15^th,

Well, I thought I would update you but I really don’t have too much new to add.  I will say the rash is getting a little worse with the cold, dry weather but it’s really not near as bad as when I was on just the dual therapy four years ago.  I have found that if I put baby oil on the rash area after I get out of the shower before I dry off and then just pat dry, it really does help.  Never thought I would be doing what my wife does every morning….so, men, don’t laugh at some of the silly things your wife does to help with dry skin….you might be doing it someday.  And like I said before, the hardest thing still is keeping up the 3 times a day 20 grams of fat snack with taking the Incivek.  The only good part is I only have one month left of the Incivek and then I will just be on the two drugs, which will be awesome.  My viral load is still undetectable and I sure hope it stays like that.

I also work in the hemophilia business and speak a lot about insurance issues and how everyone should always have a plan B in case you ever lost your insurance.  Well, we lost our insurance due to being denied (because the company stopped selling insurance in the state of Texas) and found myself in the place that a lot of people are in everyday.  And, I had to order my next shipment of drugs in 10 days which cost over $25,000.  Luckily, I am on top of insurance in Texas with my work and was able to get on the Texas Hi Risk Pool in just three days and they have paid all my drugs, what a blessing!  I will keep going and the good part is I am not as pansy with my shots and am getting over my fear of the tiny little needle.  Good luck with your therapy if you choose it…and I might add, my PA told me today she’s finding that many people are doing fairly well on this 3 drug therapy.

Nov 28^th

Well, I hope you like the video we made of my wife giving me the Interferon shot. I don’t mean to scare anyone about the shot but some people (like me) don’t like shots and this is a real life issue for some. It really should be one of the easiest parts of the therapy but for some reason I just have a big hang up about it. The real problems come the day or two after the shot…that’s when I feel the worst!! I spent most of the day yesterday on the couch, again, with the chills and just really wiped out. By Monday morning, I usually feel a lot better. Unfortunately, the rashes have started getting worst…mostly on the back of my legs and the inside of my arms. I am trying to take Allegra (because it doesn’t make me sleepy like Benadryl) to help withthe rash and itching. I figured I would get some type of rash because I did last time. I just itch like crazy (mostly in the morning) but it usually subsides later in the day. The good news at this point is that after one month, my viral load is undetectable!!!!! So, this therapy is working and I pray I can put up with all the little side effects.

All in all, this therapy is tough in a lot of ways, but you can do it if it means ridding your body of this virus. A lot of people do the shots on Friday nights and rest Saturday and Sunday but I usually work out at my ranch and do other weekend projects on Saturday and need to feel my best on Saturdays….so, Saturday night shots work best for me. It’s just basically what works best for your lifestyle. I hope you enjoy this blog and get a kick out of our little video and hope you can handle the shots better than I do!!!!

Here’s the video and special thanks to Ryan for recording this and adding the intro…

Nov 21st

Still, doing well….but, my platelets have dropped to about 50,000 (normal is around 140k). Mine always run a little low, so hopefully I will not have to take any additional drugs to fix that….but if I do, I think they can control that fairly easily. As for the treatment, I’m still doing well…although, it seems like the Sunday night after my shot (Saturday night), I’m totally wiped out. Not sure if it is because I try to do too much or not, but either way, be prepared for the day after the shot to be worn out! I usually just want to lay around under a blanket or something (it is Nov)…..but then come Monday, I am about back to normal. I’m telling you, the eating thing is just a bear for me. I am about sick of Whataburger taquitosfor breakfast, getting sick of peanuts and I hate eating plain peanut butter. So, it’s getting harder and harder to find stuff you can eat that has 20grams of fat in it. I asked my nurse if I could just take them withmymeals and the problem with that is you would have to go too long between your night time pill and am pill the next day.

Aside from that, therapy is not as bad as I had expected. I have my wife give my shot each week and I still freak out, so it takes almost 5 min to give my shot. I don’t know what my deal is….I have given myself my own factor 8 shots (which have to be given IV) but when it comes to a needle in the stomach I really freak out. I think it’s a control issue but I can’t make myself stick that little needle in my stomach myself, either. If you want to get some laughs, check back next Sunday. We are going to try to make a short video of the whole procedure and I mean it is a procedure. The problem this Saturday night was my wife started getting real irritated with me carrying on and on, but I told her that she just can’t give me the shot if she’s mad because then I have visions of her she slamming it in and it hurting even worse. I am telling you, I have to bite my t-shirt and hold my breath BUT when it is over, I hardly feel it. But every time, I think it is just going to hurt like heck…maybe I need therapy for my therapy. Until we meet again…..have a great Thanksgiving. And, I am thankful this Thanksgiving that all I have to go through is this Hep C treatment and not a liver transplant. Things can always be worse!!

Here’s a pic of my son, Keeton, feeding me cantaloupe Sunday night because I’m too tired to feed myself. He loves helping daddy!!!!

Nov 19^th, 2011

Well, it has been a good couple of weeks for the most part. I have been doing very well and I am so excited that I have been able to keep up my busy schedule with work and exercise! I have had some rash symptoms basically all over but more like a light tingly itchy feeling. Occasionally, I will take a Benadryl at night and it usually goes away. Luckily, it hasn’t gotten bad like it did the last time I was on Interfuron and Ribavirin. I’m wondering if the reason I’m not having any real bad side effects is because I am on the RibaPak which brings the Riavirin down to just two pills a day and maybe the added combination of Incivekishelping, too. Even then, one of the most common side effects with Incivek is rashes, so why I am not getting them…..that’s anybody’s guess.

My opinion is….if your doctor really feels like you should go on therapy, you should try it and just see what the side effects are and deal with them the best you can. Maybe the most important thing to realize is to get treated while you are healthy so your body will hopefully handle the side effects better. There are new drugs coming out in a couple of years, but for me, I want to try to get treated while my liver was still pretty healthy. As side effects go I have noticed that some things just don’t taste as good as they use to. The last time I tried treatment (about 4 years ago), I got to where I hated a hamburger and fries. The other day I got one and threw it away after biting into it…I just couldn’t eat it…and the fries tasted just like eating cardboard. I guess that’s really not a bad thing because most French fries are really bad for you. Have you ever found an old fry in your car and wondered how long it’s been there? A fry can go up to 6 weeks before mold will even grow on it and I got to believe that can’t be good in your stomach. Like I said, getting a good diet while on therapy and finding ways you can eat your 20grams of fat three times a day (for your Incivek med) is one of the hardest things for me. You have to always be thinking of how you will do it because 3 months is a long time for a diet change. One of my favorite snacks in the afternoon is fresh guacamole and chips…talk about a lot of fat…at least it’s the good kind of fat, mostly. That is about it for week four…I’m hanging in there.

Oh, one more thing, last Sunday which was the day after the shot, I went for a hard ride pulling a trail-a-bike with my little boy. We went for about a 10 mile ride and after I got home, it did me in!!!! I laid on the couch the rest of the day and into the night. Not too bad though….I am kind of crazy and want to push through as much as possible because I think it is just crucial that you keep your body in as good as shape as possible. Maybe that’s one of the reasons I am doing better than some possibly. Love to hear any comments from others that are on treatment and once again, don’t be scared of this therapy!!

Nov 8th 2011

Just got a call from my doctors office and they were very excited about my test results. My viral load was about 700,000 copies before starting treatment and two weeks later it was63!!! That means the treatment is working and that’s a big praise! To stay on Incivekafter the first month of treatment, your viral load has to be under 100 copies which is basically undetectable. So, to be under 100 after the first two weeks is wonderful.

Nov 6^th 2011

Well, here we are in my 3^rdweek and I think the honeymoon is over. Last week was really fine but eating 20 grams of fat 3 times a day is just about to kill me. If you are thinking about starting therapy (on your doctor’s advice of course) I recommend you first figure out how you are going to manage the timing of taking your meds with your eating habits…because that has become one of my biggest hurdles. I’m not hungry when I’m supposed to take my Incivekandon top of that, some foods are becoming tasteless. This seems like a small worry but when you mess with someone’s whole eating schedule, it becomes a problem…eating healthy is important to staying healthy. Lately, I’ve been drinking a lot of chocolate whole milk in the morning but like last time I tried treatment, things are starting to lose their taste and that makes eating anything more difficult.

Last night when we gave the shot, again we had some difficultly. Although we have giving plenty of shots before and have used all different mixing devices (from having hemophilia and the many infertility drugs we’ve used), we ended up wasting a shot of Interferon last night because we did not completely know how to operate the device. We’vefoundoutit’s important to make sure the needle is completely screwed on tight because that sets up the dialing mechanism. But when we check the directions about having difficulty with dialing it just says make sure you pull it all the way out. Well that wasn’t the problem it was that the needle wasn’t screwed on tightly. And when we were fixing that we lost the all medicine and that doesn’thappen withotherdrugswe have used. It is kind of frustrating because I feel like in the factor world; there are a lot more people to draw on. There are people that have given factor all their lives and you can get help at the drop of a hat to learn the mixing device. Hep-C is a little different because there are no patient reps to call on and no manufacture reps to call on. They just leave it to the doctor’s office and they offered to help with the first couple of shots; but that dictates when you give your shot. I wanted to give it Saturday night so if I felt bad the next day, Sunday could be my “day of rest”. My pharmacy was helpful and sent me the www.beincharge.comweb site and which is the manufacture of the PegIntron. My suggestion would be to give your first shot in the doctor’s office, even if you think you could do it yourself. I wish we had of done that.

Today, I am feeling achy, sleepy and actually took my first nap but think that was because I took some Benadrylearlier. I thought I was feeling a rash coming and wanted to get a head of it. But, I would not recommend that again. I did not want to feel bad but I ended up just traded one problem for another. I think the best thing for me the first two days after the shot is to try, as best as I can, to push through it…and usually I get over it and feel better. My wife thinks some of my tiredness and feeling like a rash is coming on has to do withmeworkingreally hard at my ranch yesterday. So, I am not sure if I am tired because of the hard work or the shot or a little of both. Also, we were working in an area where poison ivy was so, again the almost rash feeling could be from the poison ivy or the shot or a little of both??? I also want to add that I think it’s very important to keep working out as much as you can….if you do a regular exercise program. And if you don’t, you might look into starting one because you will find that you eat so much fat it might start to show. My wife was teasing me that my belly was looking a little plump…I’m feeling like it’s starting to swell like a toad. I have a high metabolism because I’m so active but that only goes so far. And, if you are going through this therapy, you need to be in as great as shape as possible.

I hope these blogs are helpful to you. I wanted to give you an overall real life perspective of what therapy is really like, although I’m sure everyone responses a little different. In the end, I would just encourage you have to try everything you can to make it work. Be committed or it will never happen. Email me with any questions you might have.

October 30, 2011

Well, it has been a full week and I cannot believe it. Surprisingly, I am not really having any bad side effects like I did the last time I was on therapy. After the achy went away last Monday or so, I haven’t really been achy again. My wife gave me my second shot last night and again, surprisingly I wasn’t achy today either. We had a hard time working the devise and wonder if it all went it, butwe think it did….the vial was empty so I guess it worked. Overall, this three drug therapy has been great for me. I have added a picture of what the three drugs look like. The big difference now with the Ribavirin is you can get it in the RibaPak which brings your pill consumption down to only two a day, which helps a lot.

Now the negative side…the biggest pain withthetherapyis eating 20 grams of fat with your two INCIVEK pills you take three times a day. Usually, I eat some cereal at about six when I wake up and after I drink my coffee about 8:00 I am ready to go for the day. The problem now is I have to eat again, plus it must have 20grams of fat, which sounds fun but is really kind of hard. Seems like all I do is eat!!!! I am trying to change my eating habits to eating about 5 small meals a day. The second pill time is about 3:00 pm and that’s hardest. If you are like me and on the move a lot or traveling, it’s hard to stop and find something to eat that again has 20grams of fat. One thing my wife bought me (which is a treat) is just a small serving of guacamole and chips. It’s a nice treat but I’m not always able to do that so I usually resort to eating a lot of peanuts. Another difficultly last week was I did go to the bathroom a lot….if you know what I mean… and I mean a lot. Hopefully, that will get better this week. My doctor told me she could give me some medication for that but after all the meds I’m already on, I hate to take even more unless I have to. Sleeping was hard last week, too. I took some Tylenol pm several times but it seems like I’m sleeping a lot better now. I will have to admit that many times at the end of the day, I did feel a little more tired and wiped out. But, I try to push through it because I have to stay awake to take my last two pills at 10:00 pm and eat another 20 grams. Luckily, I’ve had a habit of eating ice cream almost every night before starting this treatment, so I’vejustcontinued with the ice-cream for my 20g of fat. Last time, I remember taking a lot of naps (which I never do), but this time, knock on wood, I have not taken one nap. That’s unbelievable because most people find themselves sleeping a lot. One last negative, you might notice that your stomach will feel a little wrenched any times, mostly in the morning….I guess because of all the meds it has been digesting.

After talking to the manufacture, if you can get past the first 3 weeks or so, you should probably do fine. We will see but after being on this therapy for a week, I would say don’t be afraid of it. You could have more side effects than I am having but it is worth trying!! And, most of these problems are a lot better than liver failure. I’ve had people say…couldn’t you get a liver transplant and wouldn’t that cure your Hep-C and hemophilia.** Yes, BUT that is no trade off you want to take unless you have to. You’re just trading one set of problems for another. I would sure like to fix the factory installed equipment God gave me! I will keep blogging and I hope you find this informative and practical. (**correction added Nov 6th…a transplant would cure hemophilia but NOT Hep-C, sorry if I miss lead anyone.)

October 25, 2011

Well, Sunday was a little tough and achy in the small of my back and my buttocks but after I worked it off at the ranch Sunday afternoon, it wore off for the most part. My wife also made me take two Advil. My suggestion is to be as active as you can, especially, if you do a lot normally. Try your best to keep it up because the last thing you want to do is get so out of shape you body is not as strong is it could be. The second side effect was sleeping. The first two days seemed to be the toughest but my nurse said the first two days are the roughest. I did try taking Tylenol PM last night and had a good nights sleep. I am on my 3^rdday now and if stays like this, I will be able to handle it easy. As I said, the last time I was on therapy, it was horrible for me so I hope it remains this good. The great part is you only have take the Incivek for up to 12 weeks and after that (if you use the RibaPak) you only have to take two pills a day plus one shot a week, that is easy. I will blog later in the week….after I have been on therapy for about a week or so and tell you what it’s been like. Lastly, the hardest thing about the therapy is finding something with20grams of fat that you can eat 3 times a day to take with your two Incivek. Here’s a little head spinning info, these little blue pills that you take 6 of a day, are $100.00 a peace so…you’re right, $600.00 a day and that is just for Incivek not the RibaPak. Crazy expensive……

October 22, 2011

Well, I am going to start blogging about my Hep C treatment. I hope this is beneficial to anyone thinking about starting therapy. My doctor wants me to try therapy for one year….. I just had my third biopsy and it shows some liver damage and as he says, I am the type of patient you want to treat while you are healthy. I tried it about 4 years ago but did not do so well. I only stayed on it for two months because of so many rashes that I couldn’t stand it any more. The only difference, now, is that I will be adding the new drug INCIVEK as a third drug. There are two new drugs you can take but my doctor chose Incivek/(telaprevir). I don’t think either one of these new drugs are indicated for co-infected people but my doctor is an Infectious Disease Specialist , and he is more aggressive than some. We will see…but if you don’t know me personally, I really don’t have much time for feeling bad. I work like a steamship and like to exercise a lot, too, and I sure hope this does not slow me down too much.

Stay tuned and we will see what happens to Mr. Energy. This is a picture of my my first shot…you would think a hemophiliac that gives IV’s all the time could do his own shot, but oh no!!! My wife actually gave me the shot after about 5 mins of convincing me it wouldn’t hurt….the shots scared me to death! I will try to add some humor into my blog, that will probably be the only thing that will keep me sane. Just say a prayer for me please…and my wife and son.

by Andy Matthews