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.

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.

Below is our first blog post from a mother – we hope you enjoy this entry about Kyle – future second baseman of the Texas Rangers!

Baseball…As American as apple pie, right?  But, until recently, most hemophiliacs were discouraged from playing the sport, told the risk outweighed any possible benefits.  Well, tell that to my seven year old son, Kyle, who despite having severe hemophilia, lives for the game of baseball.  He not only watches baseball for fun, but he analyzes every pitch, throw, and base running effort by every player.  At the age of 4, he started playing on the t-ball team, and this year, has made it up to coach-pitch.  He loves to hit, but also loves to play second base.  We have had some parents ask us about our decision to let him play baseball;  it was actually an easy decision.  Allowing him to play a team sport was important to us, and we knew football was out of the question!  As he has gotten older, he has asked us why everyone doesn’t go to school with bandaids on their hands or arms, but being a part of a baseball team allows him to be like all the other kids.  He hits, catches, and runs the bases just like everybody else.  Looking out onto the baseball diamond, you wouldn’t be able to tell which one is the hemophiliac.  Baseball has allowed him to develop his strength and coordination, but more importantly, given him the confidence to try new things, and that hemophilia is only part of his life – we are not going to let it rule his life.  He knows that in order to play baseball, we have to stay on his regular prophylaxis schedule, to prevent any possible bleeds.  He won’t be able to play pitcher, and catching would be too hard on his knees.   We are so thankful that his coaches have been so understanding of that.  They are so supportive of him. He doesn’t get any preferential treatment, or pointed out that he can’t do something.  He is just one of the boys on the team! 

When we see his face after getting an out at second base, or getting a big hit and scoring a run, we know we have made the right decision.

Kyle playing some serious second base!

Why I am so passionate about giving back to hemophilia worldwide……..And why you should be too!

At age 42, with all the problems that come with hemophilia, I still think having hemophilia was the greatest gift I was ever given. It’s taught me that I cannot change the lot I was dealt, but I can choose how I live my life. And when I recently realized how the other half of the world lives with hemophilia – without medication, in poverty – it hit me one day; I want to help people in general to improve their outlook on hemophilia. And I want to encourage everyone to give back to those around the world who are not as fortunate. 

My epiphany

It all started about seven years ago while I was on the internet, participating in an online support group. One day a young man emailed the news group to request help finding factor, the medication used to clot blood. His name was Lucian, age 21, from Romania. When I contacted him directly, I learned he had no access to clotting factor. He could not even get Cryoprecipitate – the treatment I used for my first 18 years. I started an email friendship with him and it has spun into one of the deepest friendships I have, without us ever having met face to face. 

Lucian Uritescu with his painting

While I was able to live an active life in the US, Lucian’s life was a struggle. On prophylaxis, I worked out with weights, and participated in mountain biking. Lucian, without reliable access to treatment, does not participate in any physical activities for fear of bleeding. He had to quit school at age ten due to his frequent bleeding episodes. While resting in bed often, he taught himself to read, write and speak English by watching American television. Can you imagine going for days or weeks with a bad bleed, with its throbbing pain, with joints swelling like a balloon and not being able to treat it?

Then Lucian wrote in 2006 about changes in treatment protocol in Romania. Those with hemophilia would no longer be treated at an ambulatory center. All treatment, even for minor bleeding episodes, would require a two-week stay in the hospital. The challenges Lucian faces daily are mind boggling to me and yet my Romanian friend lives this way every day, just hoping he does not get another bleed. Thousands of others like him living in developing countries face the same daily challenges. I feel guilty knowing how Lucian lives, but I reconcile that by giving, in some way, to someone in a developing country who has a bleeding disorder who needs help. You could, too.  

How blessed we are

Reading about Save One Live founder Laurie Kelley’s hemophilia adventures in the poorest villages from Africa to India has helped me see how blessed we are to live in the US. Hemophilia is not that bad when you have access to factor and proper treatment.

But in the developing world, it’s another story. For example, I remember one night when I got a phone call from Lucian. He told me that he had just gotten mugged and had been hit in the head. He asked what he should do. It felt strange for him to be calling me. In the US, we would call our doctor or treatment center, or go to the emergency room. Lucian doesn’t have those kinds of options.  He asked me if he should take some of the donated factor he had on hand. I told him yes. I was not trying to play doctor but I knew his alternatives were not good. I recommended he take a larger dose than normal and to keep a close eye on his condition. I stressed he should go to the hospital if his condition got worse. He called me the next night from a pay phone at the hospital. He said he did indeed have a head bleed. Lucian was lucky; the hospital had some plasma on this occasion and he would recover. It is these kinds of events that really make me see how life is for many people with a bleeding disorder, like Lucian, in developing counties. 

Role reversal

It’s strange: Lucian usually ends up motivating me, because despite all he has to deal with, he still has a positive outlook on life. Lucian is an artist. Last Christmas he sent me a unique gift: a painting of an old man. I love helping Lucian, and expect nothing in return, but when I got that painting and saw all the things he sent my son Keeton, and me it was the best Christmas gift I got last year!

Lucian hasn’t had a formal education. He wasn’t able to attend schoold regularly due to his bleeding episodes. He is now unemployed, and lives in a small apartment with his parents and grandmother. There is little privacy. And they own very little. Days and even weeks sometimes pass before I get an email reply back from him. His Internet access for years had been through Internet cafes, which are costly. With little money, it’s a problem for Lucian. Can you just imagine life without easy access to your computer? Most of us are addicted to being online; it’s an easily taken for granted way of life. When it is your only access to the outside world, and it is limited, it must be frustrating. 

To help defray costs, we recently  began using Skype, a free telephone service provided over the Internet. We are even able to use a video link. Talk about an unreal experience, to see him and his family in a live video! I even performed a song on my harmonica, and watched their faces in surprise as I played!

To whom much is given

I have tried to live my life according to the Bible quote “To whom much is given, much is required.” I cannot tell you how it feels when I get emails from my friend thanking me for helping him; to receive his Christmas gift was wonderful. My friends who do not have hemophilia would never be able to experience that kind of appreciation. 

If you get involved with Save One Life, it too will change your life. I truly believe if my parents had been able to read Save One Life’s One Voice to me when I was a young child, it would have given me a different way to view hemophilia. Rather than feeling sorry for myself and struggling with poor self-esteem, I could have learned how others live around the world. I could better appreciate what I had. Perhaps I would have started back then helping other kids, but it’s never too late to start helping now. 

Because of  my efforts, Save One Life will enroll Lucian in their sponsorship program. If you’d like to sponsor a child with hemophilia in the developing world, contact them today! There are children waiting for a sponsor like you. Visit www.saveonelife.net for more information.

POSTED BY: ANDY