Lung Wars: A New Hope

When looking for a good doctor, it is a little like looking for good qualities in a spouse. You want a good listener, someone who shares your concerns, who talks things over with you, someone you can trust, and bonus if they're encouraging and positive. For most of my childhood, I had that in a great team of doctors. Then when I was forced to switch to the adult program, it was fine at first, but as time went on the initial interest faded. I didn't feel like they always had time for me; appointments sometimes took as little as five minutes, very in-and-out. They didn't discuss everything with me. And then, I really began to lose my trust in them.

Tuesday, I came to see the new doctor at the University of Missouri. Unfortunately, it was a bad appointment. My lungs are very, very sick and unhappy. And we needed to do another hospitalization, despite just finishing one on July 1.

So I am here in the hospital in Columbia with a new team of people, but oh what a good experience it's been so far. And it's only been two days.

There is so much I could say, but I won't bore you with the nitty gritty details. It's been a bit of a whirlwind but I'm realizing how much Barnes wasn't doing for me, how much they didn't involve me in the discussions of my care. I have learned more and discussed more in these two days I've been here than I ever did in my three years at Barnes. Many different doctors have sat down with me and said "So, tell me about..." whatever. And I do, and sometimes they say "That's good, keep doing that" or sometimes "We need to switch that up, this is actually what studies have found to be better and more effective." Who knew? I feel like my healthcare and my routine is getting the much needed full evaluation it needs, almost an overhaul.

Right now I am renewed with hope. Hope that I can improve my condition instead of just tolerate it, watching it slowly decline. But I know it's up to me. I have to keep these changes going when I go home, no ifs, ands, or buts about it.