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 prayit is treatable and viral.  If not, they will try to manage it withsome 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 tradeoff.  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 withthe 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 withdry 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 withtherash 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 withmeworking really 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

If you ask Charles what his favorite things in life are, he will reply without hesitation that his wife Amber, and two sons Jamey (three) and Max (four) are the lights of his life. Although Charles shares a similar passion for family with many other fathers and husbands, Charles is unique because he suffers from severe hemophilia. Instead of wrestling with his young boys like most fathers, Charles found himself unable to do so due to the severe deterioration of his left knee. After having to consistently miss out on play time with Max and Jamey, it became clear that the only thing Charles could do to improve his situation would be to get a knee replacement.

Born in 1984 amidst the height of the HIV hysteria and inflicted with target joint bleeding in his knee, Charles’ parents decided to only infuse him with Factor 8 when absolutely necessary in an effort to protect him from HIV and tainted blood products. However, as a result of his parents’ cautiousness, Charles’ knee grew progressively worse and he experienced some of the most painful bleeds imaginable. To try to inhibit the bleeding, Charles visited a doctor who gave him some ill advice consisting of immobilizing his knee by casting it for 18 months. The results were tragic; Charles lost the majority of his range of motion, his muscles severely atrophied, and the growth in his leg was stunted leaving him with a severe limp and a shortened leg. Despite the struggles with his knee, Charles was able to escape the ‘80’s HIV free, and in 1992 underwent a left knee synovectomy which helped reduce the number of bleeds and pain but regretfully ensued in a larger loss of motion. Over the next 18 years, Charles soldiered on by keeping the rest of his body strong through lifting weights and working out at the gym.

It wasn’t until the Spring of this year that Charles decided he had had enough and that it was finally time for him to get his knee replaced. He started the search for other hemophiliacs who have had knee replacements and through his research was able to find a doctor who would treat the knee surgery and rehabilitation as equally aggressive as a normal patient; reminding him that he would be fully dosed up on factor 8 and therefore would have no reason to hold back. On June 29th 2011 Charles successfully had his left knee replaced and after staying in the hospital for only two nights he was able to walk out of the hospital on crutches with a brand new knee. The cast was removed on the third day of post op and Charles was able to immediately put weight on it. Range of motion therapy for Charles was aggressive with him opting to skip the passive motion machine after the first few hours and move on to an exercise bike to break up the scar tissue (a process that has been compared to the pain of child birth).

Due to the aggressiveness of both his therapist and Charles himself, Charles has achieved incredible results in regards to his range of motion. Today Charles’s knee can be completely straightened out to zero degrees and bent to the capacity of 123 degrees, whereas beforehand his range of motion was ten degrees straight and 90 degrees bent. His range of motion was not the only good result of surgery, the surgeons were also able to actually lengthen Charles’s leg and remove the bow he developed as a child by inserting a replacement that would normally be used for a twelve year old.

If you ask Charles about his progress he would tell you it’s based on three things: determination, hard work, and lots of Factor 8. Charles infused to 100% for an entire month after surgery and even now he infuses prophylactically to about 50% as he continues working out and building joint and leg strength. Charles now walks with a cane and is learning to walk with a normal heal/toe gait. He spends a lot of time on his “simple” bike at home accompanied by stretching exercises. He is mostly pain free except for the days when he pushes himself too hard.

Charles’s knee replacement has been a great success. After being told by many that he could never have a knee replacement because of his hemophilia, Charles persevered. Instead of being defined by his hemophilia, Charles has shown everyone that anything is possible; including wrestling with your boys.

X-Ray of my right ankle fusion. Notice the broken fibula!

My bleeding episodes occurred in my left ankle during my elementary school years. I remember my physical therapist fashioning different plastic molds in an effort to stop the bleeds and alleviate the pain. Crutches were part of my regular fashion statement at school and despite the jeers of some bullies and others accusing me of “faking it” I continued to put on my brave face and soldier on. Back then during the 70’s Hemophilia did not have home treatment protocol. Bleeds often became so severe and painful that they required in-patient stays at the hospital. I became a regular at Primary Children’s Hospital and spent many nights crying myself to sleep, my father rubbing my ankle or back to try and help me relax from the crushing pain.

Eventually my left ankle finally settled down when I was about 12 years old. Then I promptly became an avid sports fan and discovered the joys of pickup basketball and tag football games in my neighborhood.  My right ankle immediately decided it was its turn to bleed. Luckily we did have home infusion treatment in place by then and I was able to stop the bleeds before they were out of control. However, my right ankle along with my left knee continued to be target joints bleeding almost weekly with my left ankle occasionally joining in on the act.

A painful worn out joint is the end result to all of this bleeding and an ankle fusion is the best remedy to fix it. I eventually could not walk at all without severe pain and tendonitis around my left ankle and decided to get my first fusion in 2006 at the age of 41. Ankle fusions are actually a pretty straight forward surgical procedure. Five long screws are drilled deep into the ankle and tibia from two incision points. One is laterally on the side of the joint and the other directly over the top.  They have to physically break your fibula during the surgery to better access the joint area. The joint is set at a right angle 90 degrees and soft splinted for two weeks. That first two weeks is the most painful but can be controlled pretty well with pain meds.  Following that you are put in a hard cast for an additional four-week period. There is no weight bearing at all during this six-week period, which makes it very difficult to function in your daily activities.  Finally you are placed in a walking boot for 4 – 6 weeks and about 8 weeks post-op you are finally allowed to put some weight on the ankle. The boot does a great job of keeping the joint stable and I did not experience hardly any pain at all while walking in my boot.

Both of my ankle fusions went like clockwork. Because I infused to 100% every day for the first few weeks I did not experience any bleeding problems. My ankle healed and the bone fused together around the screws eliminating the pain. There is no physical therapy for this procedure. You pretty much are on your own and the process of walking again generally stretches out the foot and works the post-op pain out over a period of several weeks. Your foot bones and toes take over the bulk of the bending when you walk so they will get sore from time to time and may possibly get worse over the long term, but generally speaking you will feel like you have a new ankle and best of all no more pain! Your ankle actually still bends although somewhat more limited but I now have two pain free ankles and am able to walk with a semi normal gait doing the things I enjoy including golfing and going on long walks with my family.

If you have an ankle joint that has basically been destroyed by a lifetime of bleeding and are experiencing severe pain don’t be afraid to get this procedure done – it is not an easy process but the end result is fantastic and you will be so glad that you did it. If you have any questions at all about this please email me! thefeel@mac.com

As a person living with hemophilia, I love anything to do with fitness and building great veins.  From the time I was a small boy I always wanted to be as strong as I could.  I have come across a great item that I think will really help build strength in your forearms and consequently build your veins.  If you have hemophilia, your veins are your lifelines and you really have to be diligent to keep building them.

I was in my local REI one afternoon -I had a gift card to spend, and I saw a Gyro exercise ball which is meant to improve your grip and since I have recently built a climbing wall and need something to help build my grip strength, I decided  I would try it.  I brought it home and after a little struggling I got it to work; man is this a neat device!   I think this is one of the best exercise tools for anyone, especially people with a bleeding disorder who have to access their veins a lot.

The basic idea is that you are working against gravity and the harder you spin the ball, the more resistance it creates.  The great thing is that a person of almost any age or strength level could use it, and I don’t think you could ever get a bleed from it.  The faster you spin it the stronger you get!  And, the more you build your forearms, the better your veins will become.  If you have really bad elbows, there is a chance this could give you problems, so as with any new exercise, you should ask your physical therapist at your HTC or your doctor if you have any questions.  The neat thing about fitness is, if you are dedicated to it, you will get results.

Young men, this will be a great thing for your arm veins and the girls will love it to!  Moms and dads, this would be a great thing to do with your son or daughter who has a bleeding disorder; you could even make a contest out of it.  Men and women, this is also a great device to use if you have trouble lifting weights and getting a traditional workout in.  You can find them at REI, or probably at any sporting goods store, or look on the internet too where I just bought some more for only $15.00 each at Amazon.com.  Here’s their website, www.dynaflexpro.com, to read more and see video of it in action.  Good luck and please let me know if you try it and how you like it.

Keep spinning…Andy Matthews, andy.matthews@stcare.com

Through the eyes of survivors and family members, BAD BLOOD chronicles how a “miracle” treatment for hemophilia became an agent of death for 10,000 Americans. Faced with evidence that pharmaceutical companies and government regulators knew the product was contaminated with deadly viruses, the hemophilia community launched a powerful and inspiring fight to right the system that failed them and to make it safer for all.

Produced and directed by two-time Emmy Award winning filmmaker Marilyn Ness, BAD BLOOD honors the memory of those who were lost.

To learn more visit www.badblooddocumentary.com

Have you ever had a dream that you just knew you had to fulfill?  Something you just knew your life would not be complete without?  So it was for “Brownie”, a thirty-something airline pilot living (and flying) with hemophilia.

Brownie started flying at the ripe old age of ten.  His first flight lesson recorded in his logbook is dated 1986!   He even remembers how he had to sit on phone books to see out the window, and his flight instructor had to strap blocks onto his feet so he could reach the pedals for his lesson.  He says, “Almost since I could talk, I have talked of becoming an airline pilot.  I waited until I was ten because that was when I could help out enough around the house to earn enough money for a flight lesson!”

His dad was a private pilot and he says his parents were a huge positive influence in his life.  “They taught me from a very young age, that I could do whatever I set my mind to,” he states.  He says he has been told that he used to fall asleep in the back seat of his father’s plane before he was old enough to know what was going on.  He and his dad still share a love of flying today.

When asked if his having hemophilia got in the way of his dream of flying he said, “My hemophilia has been a significant hurdle in becoming a pilot and continues to provide challenges in my career.  I have never been as concerned about my hemophilia as the FAA is!”  Each year he has to pass a flight physical along with all other commercial pilots, the only difference is, he also has to obtain a note from his hematologist stating that he is healthy enough to fly.  He says, “I have had to work harder to get my medical certificates than the average pilot, and this has made me more appreciative of my opportunities.”  Brownie infuses prophylactically to avoid any problems with his flight schedule and he always makes sure that he has factor with him when he flies.  “There is no time for a bleed when you are running on such a strict time schedule,” he says.

As if flying with hemophilia wasn’t enough, Brownie is also an avid hunter and fisherman, even though as he replies, “my wife probably wishes that my dad had never exposed me to the outdoors!”  Depending on the season, he is either hunting or fishing on his days off.  He has been tournament fishing since about 1993 and hunts mule deer, whitetail deer, waterfowl, turkey and pheasant on his families’ ranch in Nebraska.  He also hunts near his home in Kentucky for waterfowl, deer and turkey and in Texas for dove and quail.  He says, “Hunting involves a lot of walking and hiking over some treacherous terrain, while fishing requires standing for up to nine hours straight.   The joint pain gets harder and harder to overcome, and I am sure that at some point I will have to slow down – but for now I figure I better get it done while I still can!”

Many dreams have come true for our friend “Brownie”.  When asked if there was ever a time when he thought his hemophilia might get in the way of achieving his dream he said that he actually quit flying for a while when he went to college.  He assumed that the FAA wouldn’t allow him to get the medical certificate needed to be a pilot.  He nearly gave up his dream and began studying agriculture management at Texas Tech, but when he learned he could get his medical certificate he went to flight school in Oklahoma to finish his flight training.  “Never let anyone tell you what you can’t do,” he says.  “There were times that I thought it wouldn’t be possible, but determination and perseverance pay off.”  Brownie let his dream lead him to the skies and he is flying high with hemophilia!

Twenty –one year old Andrew Schnitker has always loved football and hockey; and even though he has severe factor VIII hemophilia, these sports will continue to be a huge part of his life.  That’s right, because even though Andrew can’t play these sports due to two target knee joints, he has high hopes of becoming a sports broadcaster after his graduation next December.

Andrew grew up in Dallas, Texas, and also has a brother who has hemophilia.  His mom knew she was a carrier because her dad had hemophilia, so she knew Andrew would have hemophilia before he was born.  “The thing I like least about having hemophilia is having target joints; both of my knees are bad. I had a port a cath from age 5 to 13, and started prophylaxis then since I started developing target joints before I was five because I had an inhibitor,” he recalls.   Andrew’s parents kept up his prophylaxis and he eventually beat his inhibitor.

When he was a boy, Andrew loved to watch the Dallas Cowboys football games and remembers watching the Dallas Stars hockey team win the Stanley Cup with his dad.  He really wanted to play, but was never allowed to.  “Mom and Grandma wanted to keep me safe,” he says.

Since Andrew has always loved sports, and has been acting since he was five years old, he has found a way to combine the two into a career.  He has been studying communications at the University of Texas in Austin, and hopes to someday have a job in the sports field.  You see, there is more than one way to have a career in sports; Andrew hopes to possibly be a sports writer, editor, producer or reporter.  He says, “I love sports, it’s something that brings people together, and to see the drama unfold is a thrill.”

Andrew is the president of his fraternity and says he has spent the last four years teaching all of his fraternity brothers about hemophilia.   He says, “I would rather have people ask questions and learn about my bleeding disorder than try to hide it or be embarrassed by it.  It is a disorder that not a lot of people know about and I want to clear up their misconceptions.  I would never want to use this disorder as a crutch.”

Andrew currently does a Radio show on campus.  “I’ve been the sports director on 91.7 KVRX for a year.  I do the Longhorn College sports talk, it is an FM spot Tuesdays at 7:00PM,” he explains.   He started out as a guest on the show, and finally was given a show of his very own.  He jokes, “I just kept volunteering until they gave me my own show!”  He says, “I have also done an internship with ESPN radio.  I love it because you get to create a character.  You can show up in athletic shorts and a T-shirt, it is such freedom- so enjoyable.  It’s a stress release for me.” He says he is not sure what his eventual job will be, but for the summer he has an internship with the CBS affiliate, doing sports writing, producing editing, and maybe even some reporting.   He is excited about his future and says he can’t think of anything better than to get paid for doing something you love.  He even thinks he would be willing to move anywhere, just to get a job in sports.  He says, “It’s funny, when I was in school, I hated English, but loved geography and history.  Now I may be a sports writer!”

Andrew’s advice to other kids with hemophilia is, “Don’t put yourself in a box that says, “I am a Hemophiliac!” It does make you unique, but you just have different challenges.  Embrace it, but don’t let it change who you are.  And Andrew’s advice about going to college: “Choose a major that you’re interested in, or really like.  College will provide some of the best experiences of your life…learn as much as possible and get involved at your school.  Everyone in college wants to meet new people and learn about different cultures, so jump in and embrace it!  The more learning and growing you do during your college years the more likely you will be to find the job you really want!”  That sounds like good advice from a twenty-something who has it all together and will soon be reporting from the world of sports.

I know that I am just a little voice out here but even if the people who visit this website sweetaffliction.com would commit to achieving an optimal weight, exercise, and diet, that alone can make a big impact! If all the children and adults living with hemophilia could maintain some kind of fitness routine they would have healthier joints and if they are dealing with problem joints, even a moderate amount of fitness along with factor dosage can help rebuild muscles around the joint areas and minimize future bleeds. Think about how much better you would feel with strong healthy joints! I am living proof that eating right and adhering to a fitness program with strict discipline can change your life if you are living with hemophilia!

I know fitness is the answer because I can tell you that I am healthier than most people living without hemophilia! I remember that when many of my hemophilia friends found out they had HIV in the 90′s most of them just figured they would die. I always thought that mentality was crazy and I chose to start getting more serious about what I ate, having a positive outlook and most importantly developing a work out regiment with regular cardiovascular exercises. Yes I had a bad ankle target joint to worry about but I still stayed true to the physical activities that worked for me – mostly mountain biking and fast walking. Did you know that if you will just commit to parking in the furthest parking place, taking the stairs instead of elevators and walking whenever possible you will be amazed at how much better shape you can be in by incorporating fitness into your daily routine. Heck, just think about how much power walking you can do by going to the Home Depot or the mall. You can get exercise anywhere by just walking like you are in a hurry and you will look important while you are doing it!

The great thing about fitness is that it is a sure thing. There are many things in life I can tell you to do that are not a sure thing. I can tell you to work harder but that does not necessarily mean you will make more money. I can tell you to improve your appearance but that doesn’t mean you will get more dates! You can do all the things your Hemophilia Treatment Center says but that does not guarantee you will not have any problems. But I can promise you this, if you are committed to it you will get results from a fitness program! How much success you achieve is up to you. No matter whether you are rich or poor, tall or short, skinny or fat – with proper training, diet and good clean living your body will become your temple! 

Start working out now! Begin by just walking. Then try some light weightlifting or swimming. Get your helmet on and try some mountain biking. Make sure you factor up to prevent bleeding and get better results. And always go over your fitness plans with your Hemophilia Treatment Center staff before starting  - especially your physical therapist. I guarantee you will start dropping cumbersome weight and building stronger muscles and most importantly joints. You will have more energy and begin to feel better. In these uncertain economic times this is the single best thing you can do for yourself and your children. After all, if you do not have your good health and strong body, what do you have?

POSTED BY ANDY

Fitness for Life That Also Builds Better Veins!

 I want to encourage you as an adult or child with hemophilia to get fit.  I have always been passionate about fitness and I guess it goes back to the fact that I could not play sports when I was growing up in the 70’s.  I wanted to at least look the part and be stronger than my friends to help my self-esteem.   I wanted them to think that even though I did not play sports that I was at least strong and fit.  Ok, so what are the best things to do and what have I done.  It all started with swimming and biking.  My dad got me a bike when I was about three years old and from then on I was “bike crazy”.   I truly believe it helped me to not develop a target knee.  Think about it, I am 43 yrs old, severe f-8 and was not on prophylaxis, like I am today, and to make things even worse was on Cryoprecipitate till I was 18yrs old too and my ankle is my only target joint.   I am truly a small miracle with the few bad joints I have today.   And, both swimming and biking have helped to strengthen my ankle. 

In my opinion, you need to focus on low impact strengthening exercises to build your muscles.  Remember, a strong muscle bleeds less and heels faster!!  I will tell you with the triple H’s it has truly saved my life to stay fit.  And at 43, I am still able to leave most of my friends on the mountain bike trails that do not have hemophilia or any other excuse except just being lazy.  As an adult, I would encourage you to really build around the good joints you have.  Everybody has specific issues and the important thing is you do not make your joints worse but better. 

If you are a parent, you really need to be active with your child!  It will be very rare if your child is a fitness nut like I am on his own.  I will say most children are an offshoot of their environment.  If you are not into fitness they probably will not be either.  I know with my two and a half year old son I am already teaching him about exercising and it will be a way of life for him.  It is that much more important for a young person with a bleeding disorder.  In my opinion, the advent of video games has really taken away the spirit of exercise out of children’s daily routine like when most of us were young. 

I will tell you there are so many positive things that being in shape will do for you as a bleeder.  For instance,  If you are HIV + or HEP C+, when you raise your heart rate that in turn stimulates endorphins which help your immune system and will just give your body a stronger foundation to work with.  If you are both, same thing happens.  As my doctor always tells me good clean living has served me well and you will always see people do a lot better that are co-infected that are in shape.

Andy’s routine exercises to keep in shape:                

1.       At least once a week I hit the mountain bike trails for a hard ride through all types of technical stuff that challenge my whole body but really is very easy on all my joints, other than give them a good muscle and awesome cardiovascular workout! (that is if you don’t wreck and I always wear a helmet) If you are a parent try to get your kid on a bicycle early and do it with him when he or she is older.   If you are an adult there are so many types of bicycles you could start with but the great thing is for the most part it is a non weight bearing exercise so that is what makes it great for our joints!!

2.       I try to hit the gym at least once or twice a week for about a 45 minute workout. I would add, I have been working out for years and the best thing you could do is hire a few sessions with a personal trainer and first talk to your physical therapist at your HTC if you have one.  Tell both of them you have hemophilia and need exercises that build strength without damaging any of your joints. My workouts consist of:

A. lots of pull ups (awesome exercise and not hard on the joints and you get three exercises all in one.  If you can’t do pull ups, start with lat pull downs)

B. Inverted leg press machine and do high reps and low weight. (15-30 reps with about 3-4 sets)   Also it’s a great way to work your ankle and many times it is easier on it than most exercises but it is not the best if you have bad knees. 

C. Hamstring machine is also a great one and most people can do this one and it is not very hard on the knee at all, it helps stabilize your whole joint and will burn, burn, burn!!!

C.  I do about three bench press sets and either the incline bench press machine or flat  bench.  If you had minor elbow problems you could do bench flys with a lighter weight and that might take some stress off the joints. 

3.       I walk a lot and very fast walking.  Best solution is to get a Fox Terrier like I have because she definitely sets the pace for me which is as fast as you can walk.  You are your own gauge as to what you can do but most guys with hemophilia can walk more than they do.  It’s a great way to drop weight and build muscles somewhat and a great thing to do with your family and pets.

4.       I also do a lot of pushups of all kinds.  My favorite right now is doing them with the”Perfect Push Up’s” (perfect pushup.com).   Pushups are awesome and you can do them anywhere but I would recommend doing them with some type of push up bars to make it easier on your wrist!!

5.       Building your core.  Everyone can own an exercise ball and almost everyone can build their core and much more with the ball at home or at the Gym.  I really like having these at home so I can regularly do my ball exercises and pushups.  No matter how bad your joints are there is probably some exercises you could do with the ball. Very easy on the joints!!  http://www.qfac.com/gear/balls2.html

6.       Building your grip which will give you great veins too.  I use my “gripprotrainer” grips often and they make them in 3 different strengths.  These round hand grips are awesome for building forearms/grip and a bonus of building great veins.  If you are a hemophiliac you know the importance of veins, they are your lifeline!  Go to www.gripprotrainer.com to order some and you too will start building veins for life.

7.       Lastly, in the summer I do some swimming and used to swim on a team. Swimming is really about the best exercise someone can do but is hard to do on a regular basis throughout the year.  It’s a great thing to teach kids to do at a very early age.  I cannot tell you how many kids I find at camp every year that cannot swim or cannot swim very well.  If you have bad joints or even if you don’t, swimming or some type of water exercises are really going to be great!

I want to conclude that these are the exercises I do for me and I urge you to check with your doctor or physical therapist to make sure you are doing the best exercises for you and your joints.  The main thing is to get on a schedule and do not veer from it.  Be disciplined and you will notice results.  Good luck and email me anytime if I can be an encouragement to you! Andytag@aol.com

POSTED BY: DAVID