We've made it through another month. It's been a good month - all things considered.
Since the first of the month my breathing has gotten more difficult. I went to my clinic appointment last Wednesday and had my usual tests (blood work, PFT, ABG). The PFT, as I mentioned in the last post, was quite a bit lower. I didn't think it was that much worse but the "brains that be" said it was. I made a chart of the changes since October:
The blue line represents my Forced Expiratory Volume in 1 Second. The FEV1 shows what percent of my air I can exhale in one second. Most people can exhale 75% to 85%. My percentage has gone from 39 to 28 since the middle of October. Apparently this explains why I'm struggling at times. The FEV1 is really important to the docs.
The FVC is a measure of lung volume. This one isn't as accurate as the FEV1 but they still look at the numbers.
As you can see the percentages have dropped and that basically means I'm moving along my timeline of the "window for transplant".
I met a new doctor at clinic because Dr. Zaas was in Cancun...nice for him! I met Dr. Snyder. She said she had met my x-rays and cat scans in the Tuesday meetings and it was nice to put a face to a set of lungs!
She seems like a nice doctor and if Dr. Zaas is comfortable with her filling in for him then Lee and I are comfortable with her also. We talked with Lauren (Khara's parter transplant coordinator) before Dr. Snyder came in. Lauren really wants to get me transplanted soon. She is really hopeful that the blood tests I had done that day will reflect lower anti-body numbers. She was glad that they were at least looking at potential donors...she seems really hopeful. Whenever they have a potential donor that is at Duke, they run a cross-match with my blood and the donors blood (they have my blood on file). So far the tests have shown positive for antibodies -- here's a pic of one of the test results:
As you can see, my "T" and "B" numbers are both showing positve with high numbers.
As soon as the results would show negative then we would have a viable donor.
THAT DAY WILL COME!
So that's about it...my numbers on the UNOS score went up - just as expected - and everything else stays the same. Still working out at rehab and still hanging around with Lee - both are good ;-)
On a lighter note...it is snowing big time right now. Lee and I went to the movies this afternoon (thanks a bunch Gordon and Ronda and Keith!). We made it home shortly after it started snowing. Here's a picture I took after 2 1/2 hours of snow...
Isn't it pretty? This is outside our building in the apartment complex.
The next one shows right in front of our patio.
Lee, Wendy and Missy