Today I got a call from Kevin O’Brien, our nurse practitioner at NIH that looks out for all the patients with Hermansky-Pudlak Syndrome. He was calling to find out how I’d been and talk about when to bring me back to the NIH next. Kevin had heard I’d been coughing a lot from other HPS patients. I told him that back in April. Of course, now that he’s asking about it, I’m not coughing as much.
“How do you feel? How’s your breathing?” Kevin asked. Seems like a reasonable question, but I couldn’t help but laugh.
“Kevin,” I said, “You know every time I come back to the NIH I’m convinced I’m having more trouble breathing, and every time there’s been little if any change of my FVC. You’re asking me?”
Of course I’m worried. Every time I have a hacking fit, and then can’t catch my breath afterwards for sometimes 10 minutes, I have visions of these little macrophages in my lungs, all fired up and foamy. Every time I get a cold I wonder what’s brewing in there.
“I’m a hypochondriac about my lungs Kevin,” I told him.
“You’ve got good reason to be,” he answered, which did make me feel better. It made me feel perhaps a little less mental about the whole thing. I never know how much to complain, and how much not to complain. I hear the words of those close to me in my head - “drama queen” – and weigh them against everything I’ve witnessed about HPS during these past four years.
The truth is sometimes it’s hard for those of us with chronic illnesses to judge just how sick we are, especially if the changes are gradual.
I remember the day I was admitted to the hospital for my colon all those years ago, my hemoglobin was six. It’s supposed to be 12. It was so low they wouldn’t even let me ride in a wheelchair from the doctor’s office across to the hospital to be admitted. They sent for a gurney and made me lay down. That morning I’d taken a midterm exam (which I aced), did my little campus job of tutoring football players and babysat a two-year-old for one of my professors. I had absolutely no idea that at any moment I could have passed out. I had been sick for a year and a half, and I was used to it. I just thought I felt tired.
We agreed we needed some objective evidence to determine just how big a hurry I should be in to make another NIH trip. I’m calling my doctor tomorrow to get a referral for a pulmonary work-up.
“How do you feel? How’s your breathing?” Kevin asked. Seems like a reasonable question, but I couldn’t help but laugh.
“Kevin,” I said, “You know every time I come back to the NIH I’m convinced I’m having more trouble breathing, and every time there’s been little if any change of my FVC. You’re asking me?”
Of course I’m worried. Every time I have a hacking fit, and then can’t catch my breath afterwards for sometimes 10 minutes, I have visions of these little macrophages in my lungs, all fired up and foamy. Every time I get a cold I wonder what’s brewing in there.
“I’m a hypochondriac about my lungs Kevin,” I told him.
“You’ve got good reason to be,” he answered, which did make me feel better. It made me feel perhaps a little less mental about the whole thing. I never know how much to complain, and how much not to complain. I hear the words of those close to me in my head - “drama queen” – and weigh them against everything I’ve witnessed about HPS during these past four years.
The truth is sometimes it’s hard for those of us with chronic illnesses to judge just how sick we are, especially if the changes are gradual.
I remember the day I was admitted to the hospital for my colon all those years ago, my hemoglobin was six. It’s supposed to be 12. It was so low they wouldn’t even let me ride in a wheelchair from the doctor’s office across to the hospital to be admitted. They sent for a gurney and made me lay down. That morning I’d taken a midterm exam (which I aced), did my little campus job of tutoring football players and babysat a two-year-old for one of my professors. I had absolutely no idea that at any moment I could have passed out. I had been sick for a year and a half, and I was used to it. I just thought I felt tired.
We agreed we needed some objective evidence to determine just how big a hurry I should be in to make another NIH trip. I’m calling my doctor tomorrow to get a referral for a pulmonary work-up.
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