Missing the NIH

Had the drug trial not been shut down, right now I would have been at the NIH for my three-year follow up. It feels so strange to not be at the NIH. I hesitate to say this too loudly for fear someone think I’m a little crazy, but I think I’m not alone. We develop a certain sentimental attachment to the place. Although I know I’ll be back someday, I was looking forward to the trip. I was looking forward to seeing my HPS friends. I was looking forward to seeing all my favorite nurses. And of course, to seeing all my favorite doctors. In many ways I have a better social life at the NIH than I do at home!

I was actually looking forward to the more extensive tests a three-year follow up would have brought. Although my PFTs are still pretty good, they had fallen last November and hadn’t improved again since. I wanted to know what a CT scan revealed. I liked going back every four months because it was so reassuring to how I was really doing. It’s unlikely anything huge would change in four months, thus any downward movement was sort of broken to you gently. When you only go back every few years, you know in the back of your brain that so much could have changed – you sort of go waiting for that bomb to be dropped that you know is going to alter your life forever.

I also just felt very physiologically safe at the NIH. I don’t have to explain anything to anyone there. I know they know. When I was working, it wasn’t easy going, but at the same time, I looked forward to the visits. I’d be so stressed trying to be ready for the work that I missed; I’d usually show up somewhat under the weather. Being at the NIH with others taking care of me gave me a chance to recharge my batteries. When you’re in “the hospital” no one bothers you much. I had a few days where I didn’t have to compartmentalize my emotions between the HPS world and the world of everyone else. I guess I felt a sense of protection there that’s hard to explain to others.

I guess these were the unintended side effects of participating in the clinical trial. I know the folks at NIH would have my back if I needed them, but it doesn’t replace seeing them.