While at ATS I met a really great guy that I wish I could bring to conference and introduce to all of you. He doesn’t have HPS, but he’s a lung transplant survivor with an incredible story. He’s pictured above speaking to the patients at the PAR Breathing Better event at the American Thoracic Society meeting in Toronto.
His name is Len Geiger. Fourteen years ago Len learned he had Alpha-1 antitrypsin deficiency, a genetic protein deficiency that can cause COPD, or Chronic Obstructive Pulmonary Disease. He was 35 and at his diagnosis had already lost 60 percent of his lung function. He was put on weekly IV infusions, but within two years was unable to work. He lost his job, and eventually his financial security, his house and his wife.
Len was placed on the list to wait for a lung transplant. He decided that his best defense was to get in the best shape possible. He made exercising his job. But it was painful. Len discovered that the steroids he’d been taking to try to breathe better was causing bilateral avascular necrosis of the femoral heads – or in other words, the blood wasn’t getting to the bones in his hips and the bones were dying. The pain, he said, was horrible and thus the bones had to be replaced with pieces of titanium. That made exercising even more difficult, but Len soldiered on.
Finally, after two years on the transplant list, Len got the call over Memorial Day weekend in 2002. It is likely the reason he survived that long on the transplant list was all that exercise. Len described to us how hard it would be to, for example, lift a modest weight. So, he’d concentrate on lifting it, putting it down, catching his breath, then doing it again.
Sadly, Len’s donor was a 14-year-old girl who had committed suicide.
Within days after his transplant, Len was walking on the treadmill and was out of the hospital in two weeks.
Len is now Mr. Fitness. Grin! He has been able to meet the family of his donor and has since competed in a 5K, 8K, two half marathons, one full marathon and a triathlon with his donor’s father to raise awareness about organ donation.
Six years after his transplant he’s been on numerous runs, mountain biking adventures, interviewed by the national media etc. But perhaps best of all he’s remarried and now has a two-year-old daughter.
I can’t even wrap my head around Len’s life. I’ll be honest – never on my best day could I keep up with him – good lungs or not.
This is one of my current battles – getting enough exercise. I hate exercising. It would be easier if I could find some activity I enjoy, but frankly, I find going to the gym incredibly boring. I don’t view walking as a recreational activity since I have to walk everywhere to do everything – probably a saving grace or I might never get any exercise.
As a kid gym class was one of the places I got picked on the most. I was always the last kid to be chosen for any activity. I was always the kid all the other kids blamed for losing any game. Adaptive physical education hadn’t exactly arrived on the scene and most gym classes revolved around ball-oriented sports.
When my parents got divorced my level of physical activity fell even more. Ryan and I were latchkey kids and we were forbidden to play outside until our mom got home from school or work, which was usually after dark. Thus, my habits turned to things like drawing, painting or reading – all very sedentary occupations.
But now I find myself in a no-choice situation. Len is an inspiration. It can’t matter whether I like to go to the gym (although that would make it easier) – I just have to do it. I just have to lift that weight, or run on that machine or whatever it is one step at a time.
His name is Len Geiger. Fourteen years ago Len learned he had Alpha-1 antitrypsin deficiency, a genetic protein deficiency that can cause COPD, or Chronic Obstructive Pulmonary Disease. He was 35 and at his diagnosis had already lost 60 percent of his lung function. He was put on weekly IV infusions, but within two years was unable to work. He lost his job, and eventually his financial security, his house and his wife.
Len was placed on the list to wait for a lung transplant. He decided that his best defense was to get in the best shape possible. He made exercising his job. But it was painful. Len discovered that the steroids he’d been taking to try to breathe better was causing bilateral avascular necrosis of the femoral heads – or in other words, the blood wasn’t getting to the bones in his hips and the bones were dying. The pain, he said, was horrible and thus the bones had to be replaced with pieces of titanium. That made exercising even more difficult, but Len soldiered on.
Finally, after two years on the transplant list, Len got the call over Memorial Day weekend in 2002. It is likely the reason he survived that long on the transplant list was all that exercise. Len described to us how hard it would be to, for example, lift a modest weight. So, he’d concentrate on lifting it, putting it down, catching his breath, then doing it again.
Sadly, Len’s donor was a 14-year-old girl who had committed suicide.
Within days after his transplant, Len was walking on the treadmill and was out of the hospital in two weeks.
Len is now Mr. Fitness. Grin! He has been able to meet the family of his donor and has since competed in a 5K, 8K, two half marathons, one full marathon and a triathlon with his donor’s father to raise awareness about organ donation.
Six years after his transplant he’s been on numerous runs, mountain biking adventures, interviewed by the national media etc. But perhaps best of all he’s remarried and now has a two-year-old daughter.
I can’t even wrap my head around Len’s life. I’ll be honest – never on my best day could I keep up with him – good lungs or not.
This is one of my current battles – getting enough exercise. I hate exercising. It would be easier if I could find some activity I enjoy, but frankly, I find going to the gym incredibly boring. I don’t view walking as a recreational activity since I have to walk everywhere to do everything – probably a saving grace or I might never get any exercise.
As a kid gym class was one of the places I got picked on the most. I was always the last kid to be chosen for any activity. I was always the kid all the other kids blamed for losing any game. Adaptive physical education hadn’t exactly arrived on the scene and most gym classes revolved around ball-oriented sports.
When my parents got divorced my level of physical activity fell even more. Ryan and I were latchkey kids and we were forbidden to play outside until our mom got home from school or work, which was usually after dark. Thus, my habits turned to things like drawing, painting or reading – all very sedentary occupations.
But now I find myself in a no-choice situation. Len is an inspiration. It can’t matter whether I like to go to the gym (although that would make it easier) – I just have to do it. I just have to lift that weight, or run on that machine or whatever it is one step at a time.
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