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

The Gears for Good bike ride for HFA was held from September 15-17, 2011.  There were about a dozen people riding and boy, was this a tough ride, but a ride of a life time.  We started out in Washington DC and drove about two hours away to the beginning of the ride down the C & O Canal that went along the beautiful Potomac River for 155 miles.   It took a while for us all the get ready but once we took off we moved along quite quickly.

 I remember thinking that our tour leader was going to be one slow tour guide and that this ride was going to be easy, but I soon found out otherwise.  We started through this cool tunnel and off we went.   It was rainy that day, and they told us it was a gravel trail- what they didn’t tell us was that it would also be very muddy.  After riding for almost an hour (it felt like we had ridden 10 to 15 miles) I asked how far we had gone and our tour guide Tom said about 5 miles, I about died and then realized that this was not going to be easy!

I loved the chance to, at times, race my hemo/blood brothers and the camaraderie we developed.  I can’t think of a time when I ever went on a ride with another hemophiliac; it was great!  I usually inflict pain on people that do not have hemophilia but these guys were inflicting some pain on me, especially my old friend Barry Hardie.  The best part was giving Barry a hard time for riding such a funny looking bike (compared to his usually cool multi thousand dollar sleek road bike) and  to make things worse, I was riding Paul Brayshaw’s cool 29er and he was leading the pack most of the time with his old bike.  What was even more remarkable was that Barry had a total knee replacement a few years ago and was as strong as anyone which should inspire anyone that they can still enjoy a vigorous workout on a bike after a knee replacement.

After we had ridden the hardest two hours we have ever ridden, because of the cold, rain and mud, we looked like you had thrown us all into a mud bath.  When we stopped for lunch we were so tired, and the most tired part was, you guessed it, our back sides if you know what I mean!  They kept giving me a hard time because I kept saying this is the best meal I have ever had, but I will tell you this lunch was the best lunch I have ever had.   By the last five miles of the first day, I think we were all talking to ourselves saying “You can do it,” because our bums were killing us.  We got to our hotel and had to literally hose ourselves and our bikes off before going to our rooms!

I think this could be a great nationwide fund raiser that could make a big impact.  Never has there been an athletic event like this in our community.  I want you all to think about participating next year if you are a biker, I guarantee it will be a trip of a life time.   

 Before I knew about this ride, I didn’t know what to think, and even had to be talked into it by Kimberely Haugsted, but I would definitely pay to do it again next year.  We rode through some of the most beautiful country you have ever seen along the Potomac, and all along the way we stopped to take pictures with our own video crew and photographers.  You would have thought we were all famous by the looks we got from other riders as we were enjoying our photo ops.  I have always been a bicycle nut, and I even worked in the bike business for ten years, starting at the age of 14 all of the way through college, and it was the best thing I could have even done for my joints and building up my legs.  The great thing about biking is that it is so much easier on your joints than most exercises; I have a bad ankle but when I am on a bike, it’s almost like it’s normal.

I carried factor with me on the ride, and unfortunately I started having a few bleeds.  After I got my third wind at about 100 miles, my knee started killing me and I even had to infuse on the trail.  Next time, I think I will dose every day instead of every other day.

One of the other things that was incorporated into the ride was the Fit Factor Program, through the Federation.  The goal of Fit Factor is to raise fitness awareness in our community and to try to encourage fitness with kids and adults with bleeding disorders (and others in the community too.)   We all can become more fit, and it sure makes it easier to get through all the things we have to deal with, if our bodies are in as good of shape as they can be.

I have a vision for the future.  If just one person from each Federation chapter rode in Gears for Good and they each raised $2,000, we could raise over $50,000, and have a lot of fun doing it.   All of the money raised goes to Helping Hands; which helps people in the hemophilia community, and wouldn’t that be great?  Think about riding, and I promise that you will be saying this was the best 3 days you have ever had.  Hey, if you want, you might even get to race Barry, Paul, Nick or me.  We all like a good race on a bike-it makes you feel like a kid again!

Andy

Andy Matthews: Given a Gift from Hemophilia Federation of America on Vimeo.

First of all, I think almost everyone would agree that what we have fought hard for and have gotten results from Healthcare reform this year, and these results are likely to stick no matter what happens.  Things like no more lifetime caps, young people being able to stay on their parent’s policy until they are 26, pre-existing conditions being lifted for children and National High Risk pools being formed are all positive results that are here to stay.  Almost all the congressman and senators we talked to said that it is unlikely that healthcare will be repealed before the next election.   If we get a shift in power with the next president it could happen, but once things are in place in Washington it is hard to undo what has already been done.

Most things other than increasing Medicaid spending, additional taxes and the issue of Mandating people have insurance are agreed up upon by both sides.   The real problem is that the healthcare bill is full of unnecessary things or “pork” as they call it.  There are a lot of hidden things in it that are causing the controversy.   I wish we could just have a healthcare bill that is just about health care and not 2000 pages of who knows what.   The main problem with healthcare reform is that it really comes at a bad time.   Unlike times in the past when there was a surplus of money, our country is really in trouble with its unbalanced budget and that just spills over into healthcare.   Hopefully, we can get a handle on spending in Washington and there will be some room for compromise on all of the things that affect us in the bleeding disorders community.

Lastly, there is a lawsuit in which about half of the states are suing the federal government for the healthcare reform bill.   It states that it is unconstitutional to mandate that all people have insurance.  We heard that it could be quite some time before that issue is settled, so states have to start preparing for what is already in place in the healthcare bill anyway.   I hope this helps get you up to date.  We will just have to wait and watch and see what happens next.   I encourage you to get involved with your local chapter and do some lobbying on the state level.   If you have never done any before, you should try and see it’s really empowering to see how you can make a difference and who knows who you might meet.  See my picture with Rep Ron Paul who is on the news all the time and ran for president and might again.

All in all, healthcare reform has helped the hemophilia community, no matter what you or I think of it overall, and I just hope and pray we will come to some type of reform that will help everyone and end this terrible insurance crisis in America.  Really, it will be the next two years and then the changes that take effect in 2014 until we really know what the overall outcome for healthcare reform will be.   Here are a few good sites if you want to stay abreast on the latest.  Go to NHF’s site, www.hemophiliafed.org or www.healthcaregov.org.   Thanks for reading, and read as much as you can and don’t forget to stay in shape because ultimately that is the only way we are going to get our healthcare problem fixed!  Andy

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!

www.hemophilia.org , www.hemopiliafed.org , www.uneedpsi.org

2010

Employers: Small businesses can receive tax credits if purchising insurance for employees.

Insurers: Cannot impose pre-existing condition exclusions on coverage for children. Must cover preventive services without copays. Cannot remove coverage when a person becomes ill. Cannot impose lifetime coverage limits.

Uninsured: Individuals with pre-existing conditions receive immediate access to coverage through a high-risk pool. Dependent children can remain on parents’ plans until age 26.

Early retirees: Employers to provide coverage for retirees and their spouses, surviving spouses and dependents over age 55 and not eligible for Medicare.

Medicare Part D enrollees: A $250 rebate check received for those entering the “doughnut hole” gap in coverage in 2010. Rebate payable by April 1, 2011.

2011

Insurers: Required to spend at least 80 percent of premiums on medical services.

Medicare Part D enrollees: Receive a 50 percent discount on brand-name prescription drugs when in doughnut hole coverage gap.

Those with health care savings accounts: Federal tax on those who spend health care savings account money on ineligible medical expenses increases to 20 percent.

Over-the-counter drugs: Except for insulin OTC drugs without a prescription are not reimbursable from an FSA or HRA, and are not a tax-free reimbursement from an HSA.

W-2: The value of your health coverage must be disclosed on your W-2 form.

2012-2013

Taxpayers: Medicare payroll taxes increase to 2.35 percent for individuals earning more than $200,000 and families earning more than $250,000.

Those with flexible savings accounts: A federal limit of $2,500 for individual pretax contributions per year.

2014

Employers: Companies with 50 or more employees must provide affordable coverage or pay a penalty.

Insurers: Prohibited from refusing to sell or renew policies, can no longer deny coverage for adults with pre-existing conditions, limits ability to set prices on the basis of sex, health status or other factors and prohibited from imposing annual limits.

Uninsured: Most Americans required to buy health insurance or pay fines of $95 per individual and up to $285 per family. Families will pay half the amount for children. Families can receive subsidies to buy insurance if they earn no greater than four times the federal poverty level

(about $88,000 per year for a family of four). Individuals and small businesses can buy packages through state exchanges.

2015

Uninsured: Penalties for not carrying insurance increase to $325 per individual and up to $975 per family. Families will pay half the amount for children

2016

Uninsured: Penalties for not carrying insurance increase to $695 per individual and up to $2,250 per family or 2.5 percent of taxable family income – whichever is greater. Families will pay half the amount for children.

2018

Taxpayers: A 40 percent excise tax imposed on high-cost employer-provided policies ($10,200 for individual coverage or $27,500 for family coverage).

2020

Medicare Part D Enrollees: Prescription drug coverage gap eliminated.

Yesterday at 4:15 pm, Feb, 20, 2010,  sweet baby girl Kelsey Matthews passed away peacefully with her Mom, Dad and big brother Keeton lying by her side. Though her short time on our earth was a struggle from the beginning until the end, Kelsey touched the lives of so many people in ways she will never know.

Kelsey’s mother Patti created a blog – theupfamily.blogspot.com which chronicled Kelsey’s journey as she fought to overcome so many enormous medical obstacles. Though she was unable to make it on this earth – her story was followed by so many people, including complete strangers, who were touched by the Matthews family’s courage and Kelsey’s determination. Especially moving were the incredible and numerous lessons of faith by those who loved her most – her Mother Patti and father Andy Matthews – our sweetaffliction.com co-founder. Their unrelenting love and faith has been an incredible example to so many of us who long to feel what it is like to trust in God and his plan. We know through the Matthews example and our Lord Jesus Christ that Kelsey is in a better place and will wait for her loving family to join her someday in God’s grace.

The Matthews family welcome flowers and would love any donations to be made to the Down Syndrome Guild of Dallas. Funeral arrangements can be viewed at www.theupfamily.blogspot.com

Below are some emotionally moving pictures the Matthews were kind enough to share with us of their family sharing some final moments with Kelsey the day she passed.

God Bless Sweet Kelsey Girl Matthews and her mommy, daddy and big brother.

Posted by David

With the start of school just around the corner, it is time for us parents of kids with hemophilia to begin planning our annual meeting with our child’s new teacher.  Back to school can be an intimidating time if you have a child with hemophilia.  It can be scary to be leaving your child, in the hands of someone who knows little to nothing about hemophilia, for most of the day.  However, if you, as a parent, go into the school with a positive attitude and useful information about your child’s bleeding disorder, the school staff members will tend to be quite receptive.

Remember that if you over react or seem overly protective, the school staff will probably treat your child in much the same manner.  No one wants to be treated differently, especially at school, so let the staff know the facts and if you remain calm and matter of fact about your child’s disorder, so will they.

It can be useful to put together a small binder with some basic hemophilia information in it and also some specific information about what to do if your son has a bleed or accident at school.  Gather information from the HTC or even on line and simply make copies of what you feel is most important for them to know.  Next, include information about your son, like who to call first in case of emergency, all of your contact information, his doctor’s phone numbers in case they can’t contact you and what kind of factor he uses.  Include any other pertinent information you feel may be helpful.  You can also call your HTC to get a copy of one of the many back to school kits put out by the factor manufacturers .

Each year, about this time, you can call to set up an appointment with his new teacher and any staff members who will be interacting with him on a regular basis.  Be patient, it seems like each year, there are a few weeks at the beginning of the year when you may get a lot of calls from the school saying your child hurt himself on the playground that may not be of a very serious nature.  The staff will get used to what is an emergency, and what is not, but you will always feel better knowing that the staff is informed and ready to deal with any accident or emergency with your son, should one arise.