04 October 2013

Rejected blood

I'm a little outraged that the red cross won't let me donate blood into the regular blood bank.  Since I have Hemochromatosis, they will take out my blood, but they just throw it down the drain.  (well not literally).

This is not the FDA restricting the blood from HH positive people; they allow it.  This is 100% the red cross and their stupid politics.  here's a direct quote from the red cross website:

The American Red Cross, which controls about 45% of the nation's blood supply, does not currently accept donations from people with known hemochromatosis. Everyone agrees that the blood is safe and of high quality. There is no risk of passing on a genetic disease through blood transfusions. But the Red Cross has a long-standing policy that potential donors are not allowed to receive direct compensation for their donation (beyond the usual orange juice and cookie). Because people with hemochromatosis would otherwise have to pay for their therapeutic phlebotomies, they would in effect be getting something of value for being able to donate for free. Thus the Red Cross has ruled that such donations violate their policy.
BS! If I had an alternative way to give blood and have it go to a blood bank I totally would.  I estimate that I will be prescribed to give blood between 4 and 8 times a year for the rest of my life!! That's a lot of blood for people who might need it.

See if you have any alternatives to the Red Cross to give blood in your area, and also, encourage them to accept blood from hemochromatosis patients if they don't already.

09 September 2013

Pillager Mud Run Special



Ran in the Pillager Mud Run last weekend and had a lot of fun.  The mud was just a little watered down, but it was still yucky and muddy.  The local public TV station did a nice little production on it, and I gave away my training secret:  American Ninja Warrior!!!

Fun times in MN for sure.

Red Cross doesn't want my O- blood

Just got a letter in the mail stating the Red Cross will no longer use my iron rich 'hemochromatosis' O negative blood in the regular blood bank anymore because of "technology upgrades". I'm pretty disappointed by this and really wish there was an alternate blood bank here in town that I could go to. They said they would still extract my blood at no charge but it will go to waste. I'm hoping to start a revolution to get this decision turned around. I have O negative blood and it's the same as anyone elses. My extra iron isn't in my blood, it's in my body and when I give blood my body uses my extra iron to create new RBCs. In other words, my blood is the same as everybody else.

Just had to vent.

08 June 2011

Comeback 2.0

In Oregon there are three important stage races for the amateur bike racer: The Mt Hood Cycling classic, the Elkhorn Classic and the Cascade Classic, each of these races are three days long. The Oregon cyclist can live the dream and doing the stage race and spend a weekend bike racing on some very epic and scenic courses. Unlike Pro tour riders, there are no team cooks or breakfast buffets every morning, (unless you pay way extra). This summer, my comeback to road bike racing, I plan to do the three stage races in the 'cat 3' category. (Bike racing lingo: cat 5 is beginner, cat 1 is almost pro).

Last weekend, the first of the three stage races took place: the Mt hood cycling classic in Hood River. In my opinion, Hood River is the most beautiful town in Oregon, and alot of that has to do with the columbia gorge. The race consists of 4 stages over 3 days.

Stage 1
The first stage started in the Dalles, and covered territory between the Dalles and a small town called Mosier. The race was on some of the same roads that the columbia gorge marathon travels in October, a foot race that I've done twice, so I was somewhat familiar with the route. However, there was one section that I was not familiar with, and this section included what is known to the locals as '7 mile hill'. Before the race I was talking with my teammates Pete and Erik, and predicted that around 15 riders would be in the lead group, and if you were not in that group, it would really suck to be trying to chase back on. I don't like to make up excuses, but I had to take antibiotics for three days in the week prior to this race for a sinus infection, which was very taxing on my system. I'm not going into details but I didn't have 'full power' on 7 mile hill, and I don't think it helped to have the climb with a slight tail wind on one of the first 70+ degree days of the spring. It was a pressure cooker and it was hot, and my lungs were still coughing up the 'gunk'. To make a long story short, I was dropped by the lead group on the climb and had to chase to get back as much time as possible for the last 20 miles with 7 others in the same position. Interestingly, exactly 15 riders finished the stage on the lead, and Pete was one of them. I finished just over 4 minutes later.

Stage 2 (11 mile TT)
The second stage was an 11 mile time trial in Trout Lake, WA. Even amateur riders use the tricked out TT bikes, or fit their road bikes with clip on bars and disc wheels. I decided to bring less to the race, so I was on my road bike with regular bars and no disc. The result here was I lost 3 more minutes to the leader.

Criterium
I was scared of this race because of the hairpin corner after the downhill, but it was mostly safe until the last corner, where a dude crashed and the ambulance came, but he ended up not leaving in it. I ended up ahead of the crash, and was 11th.

3 Summits Road race
71 miles with huge climbs in the mountains north of Hood River on paved single lane forest roads. After losing time on Friday, I was mixed about how this could go. In chatting with guys from the team we agreed that this would not be an attack fest, and more of a war of attrition. The first two climbs were tough, but I was able to hang on. The downhills were fast, and I drove down the second big decent, because being behind other riders on the brakes during the first one was just too stressful. Hung on until the last steep uphill mile with the selection of 15 riders in the field, and moved up on GC from 40th to 16th, by far my best overall finish in an Oregon cat 3 stage race. Looking forward to Elkhorn on June 17-19, where the 1st and 2nd place riders from Mt Hood will be racing, so it will be tough!




23 November 2010

Runner overcomes obstacles

Runner overcomes obstacles

Bend’s Ryan Ness deals with health disorder while competitive running

By Amanda Miles / The Bulletin
Published: November 23. 2010 4:00AM PST
Ryan Ness, 35, runs in Drake Park on Friday with his greyhound Jazzy. Ness recently won the Columbia Gorge Marathon.
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Ryan Ness, 35, runs in Drake Park on Friday with his greyhound Jazzy. Ness recently won the Columbia Gorge Marathon.
Rob Kerr / The Bulletin

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Two just might be Ryan Ness’ lucky number.

Two months ago, Ness moved to Bend for the second time after spending a few years in Portland.

And last month, he won the Columbia Gorge Marathon in his second time running the Hood River-area event (and in the race’s second year, no less).

Or maybe Ness, 35, is just plain lucky. Lucky enough that when he discovered in 2006 he had developed hemochromatosis, the diagnosis was made before the disease — a disorder of iron metabolism — appeared to have caused any lasting damage.

Running is not the only sport in which Ness participates. He also cycles and cross-country skis, and he races in multisport events. Don’t ask him to pick which of the sports he likes best, though, as it tends to vary with the seasons.

“If I had a favorite, I might try to just do that (sport) more,” Ness says. “I just like fitness and keeping in shape and endurance sports, really.”

Growing up in St. Cloud, Minn., Ness was always active. He ran cross-country in high school and also cross-country skied, but he says he did not win many races — he was a middle-of-the-pack type of kid.

But it was more about the lifestyle than the results for Ness. He took to heart the examples of some influential coaches, and of his marathon-running parents.

“I had that ingrained in my head that that’s what I kind of wanted to be like when I grew up,” he says.

So Ness kept training and got better, fitter, faster. He ran marathons, competed in Midwest nordic ski races, did triathlons.

In 2003, he even completed the Ironman Wisconsin triathlon — a 2.4-mile swim, a 112-mile bicycle ride and a 26.2-mile (marathon) run. He finished 64th out of about 1,800 participants with a time of 10 hours, 39 minutes, 5 seconds — a respectable mark for a first-time Ironman contestant.

That has been his only Ironman to date, though by his own design.

“It was fantastic,” Ness says. “I had a really good experience, so I kind of think that maybe I’ll just turn that page because if I go back and do another one, it might be horrible because you have that chance of having a horrible Ironman.”

His athletic lifestyle made Ness a natural fit for a place like Central Oregon, where he moved with his wife, Laurie, a nurse, in 2004, telecommuting for his job in computer programming.

Ness continued to compete in endurance events. He even placed in the top 10 in the elite men’s division of Bend’s multisport Pole Pedal Paddle race in both 2006 and 2007.

It was during the year between those two PPP races that Ness was diagnosed with hemochromatosis, a genetic disorder that causes the body to store too much iron, which can lead to health problems later in life such as arthritis, organ damage, or failure of the liver, heart or pancreas.

Hemochromatosis affects roughly five in every 1,000 people in the United States, according to the National Digestive Diseases Information Clearinghouse website.

The diagnosis came almost by fluke. Ness’ younger brother, Kelly, had gone to the doctor for an unrelated illness. But when his blood work showed high iron levels, Kelly was diagnosed with hemochromatosis.

Upon learning of his brother’s diagnosis, Ryan decided to undergo testing as well. And those tests revealed that he too had hemochromatosis, though he was not yet manifesting any symptoms.

No one else in Ness’ family has been diagnosed, though he suspects one of his grandfathers — who died in his early 70s after suffering from arthritis and heart disease — might also have borne the disease.

Ness’ treatment was simple. To remove the excess iron from his body, he had to have blood taken until his iron levels fell to an acceptable range.

The hard part was that he had to do so weekly for about 30 weeks in succession.

“It’s not the funnest thing to do every week,” he says. “It got really draining, not only going there again and getting poked. I think I recovered pretty quickly from them — but just week after week after week of getting this blood out of me. I was really tired.”

Not long after his weekly blood draws ended, Ness moved to Portland. He had decided to shift from computer programming to a career in engineering. He and Laurie, who is also from Minnesota, moved in June 2007 so Ryan could attend an Oregon Institute of Technology satellite campus in Portland.

Life in a bigger city proved to be an adjustment for the couple. And something was missing.

“(Portland) wasn’t all bad because it’s not cold in the winter, but we both grew up in snow, and we like to be closer to the snow, so that was hard,” Ness explains.

A job in test engineering with PV Powered gave Ness the opportunity to come back to Central Oregon. He and Laurie returned to Bend this past September.

And the very next month, on a scenic marathon route along the Columbia River, Ness pulled off one of the biggest accomplishments of his athletic career.

He knew going in that he had a shot to win. He had placed third in the marathon’s inaugural edition in 2009, and neither of the men who had beaten him had entered the 2010 race.

He started out conservatively, and about four men passed him early in the race, he recalls.

But Ness had a plan.

“I knew the course because I’d ran it the year before, so I kinda knew the race wasn’t going to be won in the first six miles, so I didn’t start out fast,” he explains.

The course for the Columbia Gorge Marathon begins in the town of Hood River and heads east toward Rowena before eventually looping back on itself and returning to the start. It is challenging and hilly. One climb is especially grueling: From the eight-mile mark to about 14.5 miles, the course climbs roughly 800 feet.

Hence, Ness’ patient start paid big dividends, as he took the lead with about six miles remaining.

Ness had never previously won a marathon because he typically ran in bigger races such as Twin Cities and Portland (where he set his personal best of 2:53:54 in 2004), marathons with massive fields and often won by professional runners.

His first win was in doubt until the very end.

Unbeknown to Ness over the latter stages of the race, another runner he had previously overtaken was hanging tough. With the marathoners blending in with participants in a half-marathon race being staged simultaneously over much of the same course, Ness did not realize until about half a mile from the finish that the runner in second place was only a few seconds behind him.

“I didn’t have a lot left,” Ness says, “so that’s why I was surprised and scared when I saw him, because I knew if he was coming fast, it would have been hard for me to react to a kick at the end. When I saw him, I just kind of went as hard as I could for the rest of the way. And he was kind of probably in the same situation as me, but I didn’t know that at the time.”

What Ness had left turned out to be just enough. He held off Win Goodbody, of Portland, for the victory in 2:57:13.4.

He won by 8.6 seconds.

“I haven’t won very many (races), so it was really cool to win it, and it gives me more confidence for the future,” he says.

Ness is not sure what his immediate future holds regarding his competition schedule, though he plans to do some cross-country ski racing this winter, make his return to the Pole Pedal Paddle next May, and likely go back to Hood River next fall to try to defend his marathon title.

Perhaps more important, he is definitely back to his old self, as fit as he was before his diagnosis. And his treatment these days is much less rigorous: He has to have blood drawn only two to five times per year.

“There’s a lot worse things that could be wrong with people,” Ness says, “so I feel kind of fortunate in that respect.”

Or to put it another way, just a little bit lucky.

Amanda Miles can be reached at 541-383-0393 or at amiles@bendbulletin.com.

10 November 2010

Drunk Monkey

My friend shot this video, it is classic.

01 June 2010

This is fascinating.

Not only do all the pro bikers dope w/ blood, they cheat with batteries too. This is actually pretty convincing. he just takes off from the rest without even looking like he's attacking.