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Transplant Athlete
Tuesday, April 29, 2008
  Across The Clouds I See My Shadow Fly

Missing: Two Story Inflatable Flying Pig (w/o genitalia)
If Found Please Contact: Roger Waters
Reward: $10,000

P.S. If you see a two story pig with genitalia floating by your window, that one belongs to Pink Floyd and is not currently lost.
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Monday, April 28, 2008
  But You May Feel A Little Sick

Problem 1) I lost some hearing in my left ear AGAIN. It's really annoying.
Problem 2) My cold ended but my allergies began. The pain from the allergies has been really intense, straight Tylenol doesn't affect it, so I've been using Tylenol with Codeine.
Problem 3) I went for a long ride on Thursday and I used a Chamois Creme sample I had lying around. Big Mistake. I've got a rash everywhere I put the creme. Not Fun.
 

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Thursday, April 24, 2008
  One Step Closer To A New Heart

Check out this article. It seems scientists are one step closer to growing an artificial heart. They've managed to grow three different types of heart cells from embryonic stem cells. These cells were placed into mice with simulated heart disease and their heart function significantly improved. That's good news for the 2700 people waiting for a heart transplant.

Hey researchers, How about working on the kidney next? There's 76,000 of us waiting for a kidney transplant. Maybe Livers should be next, there are 16,000+ waiting for a transplant, and they don't have any alternatives, like an artificial heart, or dialysis. Once your liver goes, it's Sayonara, without a replacement.

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Friday, April 18, 2008
  Sheep On A Bicycle or 4 AM Ramblings

I've had trouble sleeping lately, I blame it on the Prednisone, but I'm on so many medicines who knows...I don't mind it, I do mind what I think about when I can't sleep.

In most cases, I'm endlessly going over RAAM 2007 and the decision I made to listen to one of my crew members when he said, "You'll never make the cut-off, Since your race is over, it's best to get a good night's sleep and start fresh in the morning. I'll ride with you through Monument Valley." He also gave me false information to prove his point (If I believe he can't tell time and can't read a cue sheet, then it was an accident). At that point in the race, I couldn't do any math, so I couldn't check for myself.

It was a costly mistake, had I disregarded his instructions, I could have made it all the way to Durango with an average speed above 10 mph. I think I would have likely come close to making the cut-off in Kansas, close enough that they would have let me continue. My final tally for RAAM expenses was around $18k, so I feel like that sleep break wasted all that money. I don't want to forget this, but I don't want to be thinking about it all the time either. Maybe I need therapy.

The crew member in question is a coach and an ultra runner. Based on how he handled my nutrition and hydration, I'm convinced he was trying to sabotage my event. Against my wishes and orders, he was giving me way more calories than I could process, even an amateur ultra runner would know that it was impossible to replace what I was burning. He wasn't allowing me to have plain water no matter how much I begged. It's pretty sad when you have to beg your crew for water. He took my pre-race plan and completely threw it out the window in Oceanside. Maybe he needs therapy.

I haven't decided what my next course of treatment will be for my disease, will I ask friends and family for another kidney or will I go on Dialysis? If I get a new kidney, it could be four years before I can attempt the race again. I don't think it's possible to complete the race on dialysis. The obsession that gripped me for my first two solo attempts is gone. I don't know if I can get that back. Stephen Bugbee had an interesting observation, maybe I've accomplished enough for me. That maybe true. Racing a bicycle from Cali to Kansas is pretty amazing and I'm not ashamed of that (I am ashamed of the DNF in Flagstaff the year before).

I missed BikeSebring this year, I'm also missing the Katie Ride tomorrow, and I'll most likely not be able to do any other ultra event this year. I may try to ride to the Transplant Games in Pittsburgh, I don't know if they'll let me compete since my kidney function isn't stable.

 

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Monday, April 14, 2008
  Talk On A Cereal Box, Walk On Slippery Rocks

Do I deserve another transplant? Do any recipients deserve a second (third or fourth) transplant?

There are 100,000 people waiting for a life-saving organ transplant. Out of the 100,000 people waiting for an organ, 13,741 are waiting for a repeat transplant. As children, we were taught that we had to wait our turn, which sometimes meant waiting until everyone got firsts before getting seconds...The problem arises here that until something changes, we'll never have enough organs for everyone to have firsts.

Then there's the question of have we done enough to earn that third chance? I used to think that I needed to promote organ donation to honor my mother for her donation and to prove that I was worthy of the sacrifice. But, it's easy to feel inadequate when the waiting list is growing on a daily basis. Then, depression isn't far behind.

Is it just those of us who are compliant(meaning we take our medicine regularly and follow doctor's orders) who should get repeats?

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Sunday, April 06, 2008
  2008 Race Across America

I think I found a racer to crew for: Stephen Bugbee. I had volunteered for Janet Christiansen (she or her teammate helped me out in Colorado last year - My brain was fuzzy in CO). She needed me, then she didn't, then she did, then she didn't, so I searched the RAAM website for another racer to crew for. Since there is nobody racing to support organ donation, I settled on the next best thing: Breast Cancer. Stephen is attempting to raise $250,000 for the National Breast Cancer Foundation.

My mother is a breast cancer survivor, so is her sister Gaetana and her cousin Linda.

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  NKF Chili Cook-Off

I've been invited to be a judge for the DC CHILI cook-off. This year's bands? Staind, Live, Finger Eleven, Seether, dEAf PEdESTRIANS, and Chevelle. If you don't know, this is a concert/chili cookoff/fundraiser for the National Kidney Foundation. In the past, I was always too busy training for RAAM to go, but this year, I think I'll go.

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I've gone through kidney failure twice. The first time in 2000, my mother donated a kidney; and again in 2008, I'm on dialysis waiting for a breakthrough in immuno-suppression medicines before seeking a new kidney.

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Warning Signs for Kidney Disease:

  • High Blood Pressure
  • Burning or Difficulty when Urinating
  • Frequent Urination at Night
  • Blood in your urine
  • Cola or tea colored urine
  • Swellig of the eyes, ankles, or feet
  • Lower back pain unrelated to physical activity


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