In defense of doing stupid things

March 21, 2011 Leave a comment
I’ve done lots of things. Many of them less than well thought out. Some of these things I can’t say to teenagers, for fear that it will encourage them to do it themselves. The slight anonymity of a blog I think gives me just enough cover to be able to discuss some of these things.
I learned to ride a bike when I was 17. It was a tremendous feeling of independence. In the first year I dropped 30 pounds. Before long, I was doing back to back 100 mile days, and feeling fine afterwards. I started racing soon after that. I preferred time trials to road racing, but endurance was my specialty. Probably after enduring many 3 week stays in the hospital for knee bleeds the pain of a long bike ride was something to relish. One summer, after my girlfriend had moved to Austin, my parents left me at home while they went on a “business” trip to Europe. I got up at 3AM, got on the bike with some cash, tools, and a change of clothes, and hit the road to Austin- 216 miles away. Stopping at convenience stores to eat and refill my water bottle. I rolled into Austin at 9PM that day.
Think about this for a minute- a 19 year old, severe hemophiliac, long before the days of concentrate, alone, nobody knows I’ve left, nobody knows I’m coming, no insurance, no helmet,  and no fear. Things could have turned out very badly. But they didn’t. I proved to myself that I could do it. Like running a marathon- it’s great to know that you can. It’s also important to know that you never have to prove it again.
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Near death experiences

January 18, 2011 Leave a comment

Not the “go towards the light” kind, but the “uh oh, I’ve done it this time” kind. I’ve had 4. I’m oddly proud of the fact that only one is related to bleeding.

In my first bout with cancer, one of my chemotherapy visits I mentioned to the doctor the black tarry stools I was having. He turned paler than I was, and looked again at my blood work. Turned out, I had s bleeding ulcer, and was several units of blood low. (so, THAT’S why I was getting dizzy!). He immediately put me in the hospital to get topped up. After several hours of waiting, my wife went home to get some sleep. Several more hours, waiting for the blood bank to deliver, laying in bed, afraid to go to sleep, because I thought I’d die in my sleep. I’ve never felt so alone. Not a good way to go, I decided.

Rain slick hill country road, a 1966 MGB, and an overconfident new owner. A recipe for disaster. The first turn, the rear end slid a little and I caught it. “I can do this!” I thought. The next time I caught it again, but this time, we went onto the shoulder. “Ok, a little too fast that time. Who put that guard rail there?” Highway on one side, 60′ cliff on the other. Physics chose the wrong side. Over we went. Light, dark, light, dark, light, dark, light, dark. Quiet. The smell of gasoline, and hot transmission oil dripping on you is a great motivator to get out. Fortunately, the first thing I had done when I bought the car was to install a roll bar. I removed it before the car was hauled off to the junkyard. “for sale- MGB roll bar. Used once.” Best money I ever spent.

More recently, I was crewing for a cross country race plane. I got to fly as “co-pilot” in the support plane, a Rilley Rocket, a hot rod version of the Cessna 310 made famous by “Sky King” of my childhood. One of the big drawbacks of flying with airline and military pilots is that they tend to do “minimal” flight planning. Punch a few buttons and the GPS will take us there. The
Cross country race planes have very complicated fuel systems. Every nook and cranny is filled with a separate fuel tank. Each tank is connected with valves, switches and sensors. Somewhere on the way to Kitty Hawk the racer radioed that he had a fuel leak, and that we had to land immediately. Unfortunately, we were on top of 20,000 feet of solid cloud cover. After the mayday call, the tower cleared us direct to Lynchburg. With the flight planning we had done, we didn’t know if it was Lynchburg VA, or KY. It didn’t matter much, because while I was trying to find the correct approach plate, we were in severe turbulence- the g meter later showed +6 and -3 g’s. Every negative g sent the charts to the roof, along with cookies, open sodas, and tools. The positive g’s turned these things into missiles.
While all this was going on, the racer was holding formation off our left wingtip. Since he was depending on us for navigation, he had no choice but to follow us down. The turbulence would bounce the racer so severely that it would roll almost 90 degrees in each direction.
When we finally got down, we found a defective sensor. I told them that they could stop trying to scare me. Mission accomplished.

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We are all drinking from wells that we did not dig.

January 3, 2011 Leave a comment

“Do what you can where you are with what you have.” — Theodore Roosevelt

Each person effected by hemophilia owes a debt  to the entire hemophilia community. Every one of us: patients, parents, medical professionals, pharmaceutical companies, have knowingly or not, made life better for all of us.  There are lots of things you can do to repay this debt. Here are a few:

Get Involved.
Your local NHF or HFA chapter is a good place to start. Whether you are a new parent with lots of questions or an old guy who has seen it all, there are people in the chapter who could use your experience. The important thing is to realize that you don’t need to join the community to get something, you get something BY joining. The things you have endured have provided you with the tools to help someone else. If you don’t use the tools, they are just  experiences.

Volunteer at Camp
Most states have a summer hemophilia camp. It’s a great learning experience for the kids, and a chance for the adults to see the entire spectrum of this disease. Many camps don’t allow the parents of campers to be counselors, but you can volunteer before your child is old enough to go.

Speak to a Medical School
There are 125 medical schools in the United States, all of which are full of young students anxious to learn about real world conditions. Ask your doctor to put you in touch with a hematology professor. You can do a much better job of describing your disease and treatment than any PowerPoint presentation ever could. Just remember, you are an expert in YOUR problems, you can’t claim any expertise beyond that.

Volunteer for Clinical Trials
Every advance in treatment for hemophilia, from lypholized plasma, concentrates, and recombinates to gene therapy and oral administration,  has or will come through clinical trials. The only way for treatments to improve is for people to step up and volunteer for these trials.

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Earn This

December 30, 2010 Leave a comment

Factor is expensive. We all know this. Treatment for hemophilia has always been expensive. There are newspaper clippings from the ’60’s about families facing bankruptcy over the treatment cost, at $35 per bag (250 units) of plasma.

I use 6000 units once a week for “bleed prevention.” At $1 a unit, that’s $6,000 a week, $24,000 a month, $ 288,000 a year. In the 30 years I’ve been doing it, that’s $8,640,000. Investing $24,000 a month at 5% interest is over $19,000,000. A lot of good can be done in society for 19 million dollars. It’s only a simple understanding with society that we have the treatment we have today.

There’s a scene in Saving Private Ryan where a dying Tom Hanks tells Ryan simply: “earn this.” While our situation isn’t as dramatic, and lacks the violin soundtrack, our situation is similar. Society has sacrificed a lot to keep us alive. It’s up to us to earn it.

Categories: treatment

My first story

December 23, 2010 Leave a comment

It’s been suggested that my 50+ years of down playing the seriousness of my problems have left me with little skill in talking about myself. I absolutely hate doing it, but this might be worth it.

In 1968, when I was 15 years old, my dad bought the airplane he’d always wanted- a 1947 model Navion. After a year of convincing the FAA medical examiner that a person with hemophilia could fly, I soloed in it. Like most teenagers obsessed with something, I collected every magazine about flying that I could find. About that time, Daryl Greenameyer modified a WWII fighter and named it the Conquest I. The headline in the magazine read:

“WORLD SPEED RECORD RETURNED TO THE US”

I knew right then that that’s what I wanted to do. I collected magazine pictures and clipped quotes, and made a collage that’s still in my office today.

After my first unsuccessful attempt a college, I returned a few years later and had my faculty advisor tell my class that one of us had a GPA so bad that he would be on probation until he graduated, and had no business being an engineer. It took 9 semesters of making the dean’s list until I worked my way off scholastic probation and graduated.

I offered my services to the top 3 Formula 1 air racers, who by coincidence all lived in Texas. The first 2 never even returned my calls. Jon Sharp was open to my ideas, and we began a long collaboration. We sold AeroMagic 2 years later and began work on the Nemesis. In fourteen months it went from a blank sheet of paper to being the first brand new racer in the history of the class to win the National Championship. The 2 guys I first offered my services to never won another race. We competed for 9 more years, and the Nemesis won every race it entered. Almost 10 years later it still holds the qualifying and race record for every course it ever raced. It broke the 3km speed record for its weight class 3 times. In 2001, it was retired to the National Air & Space Museum, where the sign says: “The most successful air racer in the history of aviation.” It sits under the wing of the very first Boeing 707, across the aisle from the Enola Gay, and right next to the Conquest I.

A few years later I was in the process of hiring one of my professors to help with a project, and ran into that old advisor in an elevator. The professor said: “Dr. Craig, you remember Dan…” and went on to describe my accomplishments. I looked him in the eye and said: “I certainly hope you do.”

Our next generation racer competes in the new “Sport Class.” This class has far fewer restrictions, and allows us to use a much larger engine. The Nemesis NXT recently set a course record at 412 MPH, the fastest civilian piston engine plane ever built. Daryl Greenamyer has been dominating this race class for years. Last year, we beat him.

A special version on an NXT is being built with a 1200 HP turbine engine, with the goal of breaking a Russian TU-114 bomber‘s 50 year old record. WORLD SPEED RECORD RETURNED TO THE US, the circle will be complete for me.

I’ve been to dinner with the Thunderbirds, lunch with Al Unser Jr.’s crew chief, and flown upside down over a 1000′ high mountain ridge. I’ve driven through the Joshua Tree National Forest at night, while listening to Where the Streets Have No Name. I’ve been to the grand opening of the National Air & Space Museum and seen my work put on permanent display there.

While I’ll be the first to admit that hemophilia helped shape who I am today, none of these things happened because of it. Hemophilia shapes our lives, but it should not dominate or define them. I hope you get as much joy as I do from realizing that there may be limits to what we can do, but not to what we can accomplish.

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