Saturday, June 03, 2017

Update from the last transplant appointment

The day before the American Thoracic Society meeting, I had a transplant clinic appointment. I'm not sure how to characterize it - good, bad or neutral. Basically, my lung function fell, my six-minute walk covered less distance and the doctor reminded me (as if I needed to be reminded somehow) that although the differences are small, they've all had a downward trend for the past two years. 

Sometimes I keep myself calm about things by looking for the small upsides in larger bad news. For example, the upside of getting sicker is that my lung allocation score (where I am on the transplant list) goes up. This time, however, the numbers, while not positive, did not impact my lung allocation score. So, no upside to being reminded I'm getting worse. 

It was a depressing appointment. 

I'm so grateful that the day after ATS started, and I got to spend time with all of my HPS friends as well as keep busy. 

So, still waiting, but no change in my position on the list. I guess that is good news, in a weird sort of way? 

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