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

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

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

Close friends who love us started Hope for Hemophilia for my family. They saw the great need we were in due to my severe bleeding and the numerous surgeries that I have had over the past five years. But, I did not want to be the only one receiving such an act of kindness. Thus began a mission to give hope to anyone affected by hemophilia.

Every hemophiliac has his own story.  Although some of the challenges we face are similar, each one of us is unique. I am 32 years old and have severe Hemophilia A.  I am married to the love of my life, have four kids, and I am a Financial Advisor.

I have lived all of my life with hemophilia, which has deteriorated both of my ankle joints to the point of fusion and completely disintegrated my right elbow. Although an accomplished musician, I have been limited in my ability to play piano or guitar since my elbow was replaced.

Though excelling in my profession, my relentless bouts with hemophilia affect me everyday. In and out of the hospital, in and out of wheel chairs, always in recovery – this has been my reality. In addition to enormous medical bills, providing for my family has been extremely challenging. My monthly medical insurance premiums alone are exuberant, not to mention normal household expenses with four small children.

To most, these realities might seem completely overwhelming, but this is not the end of my story. I firmly believe that wrestling with hemophilia has given more to me than it has taken away. I have a real passion for the hemophilia community and am constantly looking for ways to give back.

I am excited at what the future holds for Hope for Hemophilia. Lately we have been able to help several hemophiliacs around the country. We are thankful that our name is getting out into the hemophiliac community.  The more our name gets out there, the more opportunities we have to bring hope to hemophiliacs and their families.  

Hemophiliacs are a small percentage who fall through the cracks, leaving major gaps in care and ability to get help.  If you are someone quietly in need, we want to join with you and help bring hope to your situation.  Please visit our website at www.hopeforhemophilia.com or call us at 1-888-628-4243.

My name is Jonathan and I have severe Hemophilia A. I am 31 years old, married to the love of my life, have four kids, and I am a Financial Advisor. I have a real passion for the hemophilia community and am constantly looking for ways to give back. My wife and I started a Non-Profit Foundation called “Hope for Hemophilia,”and are constantly working on ways to reach out to others in this growing community.

This past year we started a web site designed to help connect the community even more by utilizing social networking technology. The site is www.hopeforhemophilia.net. We hope that ultimately this will become THE web site for the hemophilia community.  This site will ultimately help people living with hemophilia to gather and develop information through life-giving relationships. We envision this being the main point of gathering for the hemophilia community because we are so spread out geographically.

Over the past couple of years, I have had the opportunity to travel and speak at many different hemophilia related events. As I have traveled, I have seen a wide variety of approaches to individual care, not so much on the part of HTC’s, but rather variety in terms of what individuals themselves are doing in  managing their own care. One of the first questions asked is “Do you prophy dose?” Which is slang for “Do you treat prophylactically?”

I have heard many different thoughts and ideas about prophylactic treatment, versus on-demand treatment, from nurses, doctors, manufacturers, home health agencies, and caregivers. However, I would like to take a moment and offer a few thoughts from one patient’s perspective. Please keep in mind, I am assuming that your Doctor or HTC has recommended you as a candidate for a prophylactic regimen.  I always recommend that you seek the professional advice of your health care provider before making any changes to your treatment.

Many people focus on the inconvenience of infusing, but what about how convenient it really is. Compared to what was available 10 years ago, we have a very streamlined process.  Most of us are VERY fortunate that we have factor readily available, and given our circumstance, I think it is worth taking advantage of.   If your doctor and HTC agree that you are in fact a candidate for prophylaxis, then by all means, do it!

Most people don’t realize that EVERY time you bleed into a joint, it damages and therefore weakens your joints. This is important because each time you don’t infuse you are placing your future health at risk. Steven Covey, a well respected author, says that we often address the urgent rather than the important. This is interesting when discussing this concept because for those who only treat on-demand, I believe they are letting the urgent (the activity, or the bleed) become the thing they pay the most attention to, rather than paying attention to the important (prophylactic treatment and/or joint health and preventing bleeds). You see, when we don’t treat regularly, we end up with damaged joints that can NEVER fully recover. Something is taken from you that you can’t regain! Something is PERMANANTLY removed from the health of your joints.

What does this mean in “real” life?  As I said earlier, I have four beautiful children! I have had two ankles fused and 6 surgeries to correct joint damage. As you can imagine, all of this was done during times of potential promotions at my job, during babies being born, during holidays, etc. At times, it has caused me to be limited in my activity and involvement in my children’s lives. I don’t share that as a sob story, only as a realization that life activities go on, whether you are able to or not. There are many things that I have wanted to do over the years that I have not been able to do, because of  limitations due to joint damage. Probably the most impacting, is not being able to wrestle with my kids the way I always dreamed of. This has taken a huge emotional toll on me directly. It has taken quite a bit of encouragement from loved ones and some professional counseling at times, to overcome.

I am a financial planner, as I said earlier, and many times people start off with a great plan in place. They know they would like to retire at 65. They start a plan when they are in their 30′s and start dreaming or imagining what they will do once they retire.  Most often, what happens between someones mid 30′s and their mid 50′s is amazing. They realize that the urgent took presidence over the important. They didn’t stick to the plan. They didn’t save a little along the way. They didn’t do what they COULD have when they had the opportunity.

I am concerned that during the transitional periods of patients taking treatment into their own hands, they stop treating prophylacticaly. Many of the kids in the community today grew up on some form of prophylactic treatment and as they are growing up, I believe it is imperative that we as a community continue to help them understand the reasons and benefits of keeping their joints healthy. I know of patients today who had perfectly healthy joints when they were young and are graduating college today with target joints. So when they are getting ready to start their careers or are getting married they are already having to deal with chronic bleeding.  In a time in their lives when they should be the most active, they simply have to slow down. This just doesn’t have to be this way.

Many HTC staff members promote prophylactic treatment as a way to help patients enjoy a relatively healthy and normal lifestyle.  Much like the financial planning example, though sometimes people start out with great intentions, then the urgent takes precedence over the important and it effects their lifestyle. If we are not careful we will have a community full of  “once upon a time” patients with stories of high school successes, and career failures.

I believe that the future is bright for our community. Easier treatments will evolve, but for the time being, Carpe Diem (Seize the day!) Set yourself or your child up for success. If they need encouragement or help, let someone in the community know. There are more and more of us that are older, that can act like big brothers and help them understand the importance of the little decisions along the way.  Help yourself, friends, children, patients understand the reasons behind infusing regularly. I believe that so many of the patients who are in transitional periods of life, stop infusing or following what they were told because as children they were told “you must treat regularly, rather than taught why they should infuse regularly. However, it is imperative as they grow older that we, as a community,  help them understand the “why” behind prophylaxis.

Lifetime Caps Bill Introduced  

On Friday, February 13, 2009, Anna G. Eshoo (D-CA) and Jim Langevin (D-RI), along with Senators Byron Dorgan (D-ND) and Olympia Snowe (R-ME) introduced the Health Insurance Coverage Protection Act (H.R. 1085; S442).  The legislation, introduced in both houses in 2008, will set a $10 million minimum lifetime cap on health insurance, with future increases based on inflation.

The National Hemophilia Foundation (NHF) played a vital role in encouraging the legislation and assembling a coalition of more than 50 patient advocacy and health organizations currently working for its passage. “However, nothing could happen without the critical leadership of the members of Congress who recognized this problem and decided to do something about it,” said Val Bias, NHF CEO. “We applaud these leaders for identifying this critically needed piece of healthcare reform and moving it forward.” On Thursday, February 26, 2009, more than 350 people affected by bleeding and clotting disorders will gather on Capitol Hill for our annual Washington Days advocacy event. We will express our support for this important legislation and discuss other key healthcare issues with members of Congress and their staff.

“Having an inadequate lifetime cap defeats the purpose of health insurance and forces those with disabilities and chronic illnesses into an impossible situation,” Dorgan said. “Low caps also end up costing the taxpayer because once people with illnesses hit their cap, they often turn to government programs for their care. This legislation will raise lifetime insurance caps and allow those with illnesses to focus on recovering—not worrying about how they are going to pay for their treatment.”

“This bill addresses a critical lack of coverage for those with disabilities or chronic illnesses,” said Eshoo. “It’s a travesty to think that people are job-hopping in order to switch insurance plans or quitting their job all together to access Medicaid. Increasing the minimum lifetime cap will result in a net savings for federal and state governments because individuals with high medical costs can maintain private health insurance. As medical treatment costs continue to increase, the issue of lifetime insurance maximums will become even more important. This legislation will protect individuals who are struggling to pay for the expensive medical treatments that are a result of a disability or chronic illness.”

NHF applauds the efforts of the bill’s sponsors and co-sponsors. We will keep you informed of further action on this bill after Washington Days.

POSTED BY: DAVID