Update 2010

Mayo trip in December. Most everything went well except MRI. Couldn't handle it once again so didn't get a brain MRI done this time. Frustrating. Everything according the CT scan looked unchanged kidney wise. They did notice what they felt was a new node or something on my left lung. Was a little disheartning going up there so many times with no change to have something new come up. Torres wasn't too concerned about it, Luthera said it may or may not be something new he suggested a repeat CT scan locally in 6 months. Left feeling a little uneasy. Since then have spoken to Torres about my concerns he spoke with a couple other radiologists and they felt it was nothing to be too concerned about and actually would be comfortable with a repeat CT in 12 months. I think I will still go for the 6 months repeat CT on the safe side.

So other then that the new year has begun. Family is doing well. Kids are involved with many different activities. I am in full swing Iron Man training for St. George UT Iron Man May 1st. I feel lucky having this disease and being able to do what I am able to do. Run, Swim, Bike. I hope that by me doing this race gives others less fortunate then I hope and courage that they can overcome the challenges which come with ECD.

In the future I will try to be more on point about posting more regularly so check back for updates and follow me on race day ironmanlive.com will forward race number down the road.

Bless & Best!
Doug