Back again

Time passes so quickly! I didn't realize how long I'd been away until a friend asked when I was going to do another blog post. Here we go...

Over the holidays Stacy, Gabe, and Ryan took me to the Oregon coast for a few days on the beach. What a joy! It brought back to mind just how much I appreciate my familys' efforts on my behalf. Going out and about requires extra planning and energy. Gabe drove me and all my gear. They loaded up a heavy oxygen concentrator, my ventilator, eight large oxygen tanks with cart, 10 smaller oxygen tanks, wheelchair and my suitcase. It's heart warming to keep in mind they go way beyond the daily assistance grind to keep my life filled with engaging activities. Love 'em!

I went for my 3 month checkup at the UW last Monday. I'm told my name comes up often. The transplant team just hasn't found the right pair of lungs for me yet. With all of this waiting it's reassuring to be reminded it really can happen any time and yes....do keep the cell phone handy! Clinic results: I walked 120ft during my 6 minute walk assessment. That's a decrease from last time. My pulmonary function test resulted in a FEV1 of 14%. My Xray, CT, and Echocardiogram were all stable. I found out I repeatedly had a blood test done wrong at my local lab. I didn't know I had to do it at a specific time of day. That's easy enough to correct eh? It just so happens that test was for the drug that causes so many problems with my feet. Now we'll be adjusting dosage upward again. Wish me better luck this time! Another area of concern is my CO2 level. It's too high at 90%. After review of the changes I have a UNOS LAS listing of 34.3.

Next! I was suprised a little while ago to get a letter saying I've been automatically signed up for Medicare Part A and Part B. The fine print at the bottom is rather blurry but I'm pretty sure it starts "You are now entering the Twilight Zone...".