Friday was doctor day. I am so blessed to have an awesome doctor! I needed to get in to see someone because I have an upcoming trip. I wanted to be sure all of my prescriptions were in order and current.
I’m not the only one who loves my doctor. His other patients must love him too as it can be rather hard to get an appointment. When I called, he didn’t have any openings until late December.
I took what I could get and honestly, cringed at the thought of starting from square zero with some poor new doctor. When this happens, I almost feel like I should apologize for landing in their unsuspecting lap. In a 15 minute appointment with a new doctor, the conversation usually starts out something like, “Hermansky what? How do you spell that?” I then produce an HPS brochure that is usually gratefully received. It makes me smile to myself as they eagerly read it over as Donna and I wrote that brochure. But, I never say anything about my HPS Network involvement, at least not usually from the get go, unless I’m having trouble establishing credibility.
Other times I’ve sat in the exam room waiting to be seen and heard scurrying in the hallway and discussions that I know very well are about me. A few years ago I went to an immunologist, and as I waited for him, I heard “Hey, Chris, do you know anything about this?” Chris responded, “No, never heard of it. I guess you’ll have to google it real quick.” Sure enough, the doctor appeared, internet print outs in his hand.
I’m not complaining. It isn’t their fault. There are more than 7,000 rare diseases, according to the Office of Rare Diseases at NIH. How could anyone possibly remember every single one, especially if you see it maybe once in your career? It’s an outreach opportunity. I really don’t mind explaining HPS. In fact, I’m honored to do it.
Still, it is nice to go to an appointment and not start from the very beginning.
As I sat in the waiting room, my doctor saw me and as he had a cancellation, switched me to his schedule. God was looking out for me!
I had been practicing this visit since the night before, expecting a newbie. I had a list and hadn’t planned to discuss just everything but rather put it off until I got back from the trip. Prescriptions – just the prescriptions. In all fairness to the other patients, by the time I got through what is HPS and went over all my meds, why I take them etc. that’s all we’d have time for.
So, I was so grateful when the nurse came to tell me my doctor would see me after all. We were able to get the ball rolling on some referrals I need and start working on scheduling some tests.
Now that the drug trial has ended, I need to be followed more closely at home. NIH isn’t, after all, like going to see your doctors at home. Their primary mission is research. Right now, I don’t fit into what they need currently for HPS research.
I understand this completely. As we learn more about HPS and pose new questions, it’s a good thing that research questions and goals get reviewed and redirected.
Still, I must confess, I miss going to NIH. When you go for years at a time every few months, you get to know all of the doctors, nurses and technicians. I miss seeing them all and hearing the latest updates from their lives. I remember the tech that always did my EKG used to give me updates on her three grandsons. One nurse I had quite often was originally from Iran. He always had interesting observations about life in the United States to share, even though he’s lived here since the 1970s. I could go on and on. Even though our relationships were professional, they were friendly and I miss them all.