One thing that separates ultra-rare disorders from other health problems is that the experience of seeing a new doctor for the first time can be stressful, even scary.
Yesterday I saw a new family doctor for the first time. I prepared for the event as though I were taking a final exam. When I made the appointment, I’d asked for more time than the usual 15 minute block because I knew I had a lot of ground to cover. I expected I’d have to explain Hermansky-Pudlak Syndrome, what it is, and where I am in the disease process. Then I’d have to explain the drug trial and the study drug. Then I had all the test results from NIH to go over, the new medications, the abnormal thyroid findings, and the ongoing allergies, diarrhea, hives and fatigue. And after all that, I’d need this new doctor to fill out my FMLA paperwork. It was a tall order, and after some cajoling I did get the scheduler to give me a double slot.
How nice it would be to be able to walk into any doctor’s office and have them know immediately what your diagnosis involves and means. I never feel that way. I never feel 100 percent confident in the situation. I arrive at an appointment with a new doctor so nervous. Will they listen to me? Will they understand? Will they prescribe or do something to me that will only make my problems worse? Will they clue into HPS, or will they be too much of the other extreme, attributing every wonky health development to HPS. Is it any wonder my blood pressure is always high at the doctor’s office?
These fears are not unfounded based on past experience.
I’ve been waiting for this appointment for weeks, all the while with the pain issues and hives and allergies and fatigue. I didn’t want to see just anyone. I wanted to see someone who could be in the picture for the long haul – things are too complicated.
First impressions can set the tone for a long time in a doctor/patient relationship. For days I rehearsed in my mind how to conquer this pile of information. How could I do it and be accurate and thorough, but not come off like a know-it-all, demanding and arrogant patient? I felt as though I’d show up and just spew so much information that it would be overwhelming. I worried that I’d come off as someone other than myself in my nervous attempt to get it all covered.
And then there’s the doctor. Would I like her? Would we communicate well? Would she be receptive to outside influences like the NIH? Would she think I’m a freak because I read everything?
The day finally arrived.
My friend Karen (not HPS Karen of course) was able to take me to the appointment, which was a tremendous help. Not only did it save cab fare, but it helped my nerves.
My new doctor is a small woman. There’s nothing chatty about her – she’s direct and to the point. That’s fine with me! She doesn’t appear to sugar coat anything. I get the impression she says exactly what’s on her mind. Great!
I started out my rehearsed speech. She stopped me. “I know what HPS is,” she said, “albinism, bleeding, guts and lungs.” I was taken back. That had never happened before. It turns out one of her students had seen me in the clinic before, so I’d apparently been the topic of conversation somewhere along the way.
How nice to not be starting from zero!
I continued down my list and she was great. It was as if her list was the same as mine. I had made copies of my lab work from NIH, some papers relating to what they think might be going on with my thyroid (which isn’t HPS related) my symptom journal and the information about the study drug. We clicked off one item after the other quickly and efficiently.
I felt like the appointment went well.
I’ve got four specialist referrals now, so at least four doctor appointments to go.
I really do hope this is the start of a great relationship.
I feel blessed to be seen by NIH every four months – not just to be in the study, but to be seen by people who actually know about HPS regularly. But, as great as NIH can be, they can’t be your home doctor. They can’t treat you. When it comes down to the nuts and bolts of every day care, we all need a home doctor that takes a special interest in us. We need someone to take us under their wing and look out for us. We need someone willing to learn about a disorder they may never see again in their career.
Yesterday I saw a new family doctor for the first time. I prepared for the event as though I were taking a final exam. When I made the appointment, I’d asked for more time than the usual 15 minute block because I knew I had a lot of ground to cover. I expected I’d have to explain Hermansky-Pudlak Syndrome, what it is, and where I am in the disease process. Then I’d have to explain the drug trial and the study drug. Then I had all the test results from NIH to go over, the new medications, the abnormal thyroid findings, and the ongoing allergies, diarrhea, hives and fatigue. And after all that, I’d need this new doctor to fill out my FMLA paperwork. It was a tall order, and after some cajoling I did get the scheduler to give me a double slot.
How nice it would be to be able to walk into any doctor’s office and have them know immediately what your diagnosis involves and means. I never feel that way. I never feel 100 percent confident in the situation. I arrive at an appointment with a new doctor so nervous. Will they listen to me? Will they understand? Will they prescribe or do something to me that will only make my problems worse? Will they clue into HPS, or will they be too much of the other extreme, attributing every wonky health development to HPS. Is it any wonder my blood pressure is always high at the doctor’s office?
These fears are not unfounded based on past experience.
I’ve been waiting for this appointment for weeks, all the while with the pain issues and hives and allergies and fatigue. I didn’t want to see just anyone. I wanted to see someone who could be in the picture for the long haul – things are too complicated.
First impressions can set the tone for a long time in a doctor/patient relationship. For days I rehearsed in my mind how to conquer this pile of information. How could I do it and be accurate and thorough, but not come off like a know-it-all, demanding and arrogant patient? I felt as though I’d show up and just spew so much information that it would be overwhelming. I worried that I’d come off as someone other than myself in my nervous attempt to get it all covered.
And then there’s the doctor. Would I like her? Would we communicate well? Would she be receptive to outside influences like the NIH? Would she think I’m a freak because I read everything?
The day finally arrived.
My friend Karen (not HPS Karen of course) was able to take me to the appointment, which was a tremendous help. Not only did it save cab fare, but it helped my nerves.
My new doctor is a small woman. There’s nothing chatty about her – she’s direct and to the point. That’s fine with me! She doesn’t appear to sugar coat anything. I get the impression she says exactly what’s on her mind. Great!
I started out my rehearsed speech. She stopped me. “I know what HPS is,” she said, “albinism, bleeding, guts and lungs.” I was taken back. That had never happened before. It turns out one of her students had seen me in the clinic before, so I’d apparently been the topic of conversation somewhere along the way.
How nice to not be starting from zero!
I continued down my list and she was great. It was as if her list was the same as mine. I had made copies of my lab work from NIH, some papers relating to what they think might be going on with my thyroid (which isn’t HPS related) my symptom journal and the information about the study drug. We clicked off one item after the other quickly and efficiently.
I felt like the appointment went well.
I’ve got four specialist referrals now, so at least four doctor appointments to go.
I really do hope this is the start of a great relationship.
I feel blessed to be seen by NIH every four months – not just to be in the study, but to be seen by people who actually know about HPS regularly. But, as great as NIH can be, they can’t be your home doctor. They can’t treat you. When it comes down to the nuts and bolts of every day care, we all need a home doctor that takes a special interest in us. We need someone to take us under their wing and look out for us. We need someone willing to learn about a disorder they may never see again in their career.
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