Most of my commentaries here are based to some extent on a scientific aspect of chronic hypophosphatemia, but today I’d like to share a bit about the personal side of health care for patients with a rare disorder.
My dentist died a few months ago at a sadly young age. I’m heartbroken for her and her family partly for all the obvious, universally applicable reasons: she was only 56, with a loving family, and she died of a terrible cancer that had to have been immensely painful.
I’m also heartbroken for me and her other patients, because she was a truly patient-focused and intellectually-curious medical professional.
I first went to that particular dental office many, many years ago, when it belonged to her father. He was an absolutely lovely person, with a gift of gab — he used to say he could talk to a brick wall, and that allowed him to chatter away entertainingly while drilling and poking around in patients’ mouths. (And remember, that was way before the days of tv screens in dental offices, so the distraction was much appreciated!)
He was the first medical professional of any type, let alone a dentist, who actually believed me when I told him that my history of root canals was due to this weird genetic disorder called, at the time, vitamin D resistant rickets. (Yes, that’s how long ago it was that I first went to that office; I still used that term, and hadn’t even heard of XLH.) I’m pretty sure he didn’t actually believe me, but he put on a good show of pretending to, and he did listen carefully. The thing is, as soon as he had the chance, he LOOKED IT UP! (Again, this was either pre-internet days or early internet days, so he had to go to an actual medical library!) And he found out that I was correct, so the next time I saw him, he shared his excitement about having learned something new. He loved learning; curiosity makes for an excellent health care provider! He even apologized for having had some doubts initially. Later on, he believed me right away when I told him roughly six months before there were any signs on an x-ray that the tooth was going to abscess. For a long time, when I was having a spontaneous abscess every couple of years, he gave me an antibiotic prescription to have on hand in case it happened on a weekend, so I didn’t have to wait or come in on an emergency basis. (Because as I’m sure you know, they always seem to go hot on a Friday evening, so you have to get through the whole weekend before calling the dentist on Monday to get the antibiotic, which gives the infection more time to grow before the antibiotic can start fighting back.)
So when he announced he was retiring at something like 80 years old (he was a dynamo, and had just given up jogging a few months earlier!), I sat him down and told him that he wasn’t allowed to retire, because he was the only person who understood my teeth. He, of course, chuckled and then retired anyway. The good news was that his daughter took over the practice. And it quickly became apparent that she too was very patient-focused and intellectually curious. I was so relieved that she had decades’ worth of notes from her father in my file, so I wasn’t starting from the scratch, having to convince a medical professional that I knew what I was talking about, even when it sounded weird. Plus, I figured she had another thirty working years left, or twenty at least, judging by her parents’ longevity.
And then she got breast cancer.
Cancer sucks.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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