Saturday, January 28, 2012

Beautiful day at Keystone, not a beautiful day skiing

Things were looking bright this morning as we headed for the slopes. The sun was shining, we made first chair but as soon as I skied of the lift, things took a turn for the worst.

I had recently taken my skis into a Denver shop for a full tune and wax except they forgot to do one important thing...wax my left ski! Needless to say, skiing with one nice ski and one acting as an anchor was no fun! I made it down safely but not so gracefully and headed straight to a ski shop. Problem solved.

I took it easy for a few runs and helped a friend learn to ski, then headed to my favorite run Bachelor and it's moguls! I thought my bleed from earlier in the week was completely healed but after some aggressive turns I knew something was wrong. My day was done.

Although things didn't work out how I planned, any day on the slopes beats any day at work! We will see how things feel tomorrow...and hopefully ride Vail!

Thursday, January 26, 2012

First Bleed of 2012

I haven't talked about this new clinical trial I have been on, mainly because I didn't want to jinx it but after 6 months and only a couple bleeds, I think it's about time.  Last summer, shortly after my trip to Africa, I was approached by the treatment center about a new long lasting rFIX(r means recombinant) product in the last phase of clinical trials.  I was slightly skeptical as most in hemophilia community probably would be after being on a product for years and years but Dr. Manco-Johnson assured me it would a good product for my lifestyle.  I would only have to infuse once a week!!!!!  I was truely amazed and excited.  Could it be real?  Could it really work?

I have now been on this study for about six months and I couldn't be happier!  I have had two break-through bleeds which is quite surprising considering some of the activities I have taken part in.  This past week was break-through #2.  Not sure exactly what happened but after a long weekend renovating the house, Monday morning started with an aching calf muscle and some swelling.  Can't complain to much though since I was up to 2-3 bleeds on month before this product.  Has anyone else out there had any experience with "long-acting" factor?  Would love to hear some stories and comments on the subject and lets all hope these bleed resolves in time for skiing this weekend!  Pictures and hopefully video to follow!