Friday, August 6, 2010

Peak Performance

How time flies when you are having fun. Two weeks ago I was driving home from the lab and called Barbie to see if she wanted to take off to drive to Mount Lassen. This is a national park with a dormant volcano at its center. We had not been there in years and we took off for the three hour drive north. It was one of those gorgeous days with perfect whether. We drove to 8000 feet, which is the base of the trail to the peak which is over 10,000 feet. Barbie wanted to go for a hike. I figured I might make it to the corner of the 1st switch-back. I huffed and puffed and finally reached it. She wanted to try one more. Needless to say, with each new turn, I felt renewed energy and soon we were half way to the peak. It was a glorious feeling to gaze over the horizon at 9000 feet. I surprised myself to discover that I could still hike a mountain, especially at that altitude. I had to at least have a health score of 96 to get that high.
That weekend I also learned that two people I know with amyloidosis received transplants. Kathy got a new liver (she has familial amyloidosis) and Vince got a new heart. His presentation was identical to mine and I knew without a heart he probably wouldn't survive for very long. Both are now home and doing well. Of all the amyloidosis patients that need heart transplants, only 10% ultimately get one. I am so excited for them both.
Caitlin finally returned home from Europe on Tuesday. She had a wonderful time, but Barbie and I realized we are not ready to be empty-nesters.
I have never been to the Grand Canyon; this is on my bucket-list. Sunday we will leave to spend three days on the North Rim at the Grand Canyon lodge and take a mule ride down into the canyon.
I went to my 2nd annual transplant appointment and my biopsy showed 1R/1A which is mild rejection. Otherwise everything looks great. I also followed up at Stanford with Dr Schrier and Dr Arai. It is clear that my response to Revlimid is dose dependent so we will try alternating 10 and 5 mg every other day and check an Allomap blood test in 3 weeks to see if it causes worsening heart rejection. With amyloidosis, there is no one right answer for every patient. One must be flexible and take calculated risks.



Wendy said...

I know I don't have to say "Enjoy!" to you...but my wish is that you will have a magnificent time at the Grand Canyon. It is everything you think it will be! Enjoy!

Vasca said...

The Canyon is one Grand experience...awesomly magnificent. Congratulations on your latest hiking've many more in your Him.

Emma and Dan said...

Congrats on being able to hike. It looks like a beautiful trip. Isn't great to be married to someone who pushes you just the right amount? :) We love you guys!
Thanks for talking with Dan last week. We're still working on a final decision, but you gave him some great food for thought.

Your favorite Aunt Renie said...

You and Shane are doing well, and we thank God for both of you.
love, Aunt Renie

Brian Ciccotelli said...

You're awesome! Isa and I barely made it up the Y when we were visiting Provo last week. :P Have fun at the Grand Canyon! I'm jealous you get to spend three days there.