Thunder woke me. In those first micro-seconds of brain fog, as I instinctively struggled against the waking, I felt something in my mouth. I tasted it. Groaning, I willed my body to move and bumped my way into the bathroom where the mirror confirmed it: a mouth full of blood. It looked like red paint all over my teeth and tongue.
So there I was, in the wee-hour pounding of an Indiana summer storm, spitting blood into the bathroom sink. Spit. Rinse. Repeat. Try not to throw up.
“A mouth full of blood.” It sounds absurd. Who am I — Dracula?
It took a photo to clarify to my doctor what I meant by “mouth full of blood.” She whisked me to an otolaryngologist, who diagnosed HHT Syndrome, also known as Osler-Weber-Rendu Syndrome. Hereditary Hemorrhagic Telangiectasia is an uncommon genetic disorder which causes abnormal blood vessels, and it gets worse with age. Swell. As though aging doesn’t bring surprise enough.
I was born with this but didn’t know it until 70 years later. Apparently my dad was born with it too but he never knew. His long history of nosebleeds foreshadowed my own and revealed the source of the problem gene (thanks, Dad).
Nosebleeds. “Piffle!” think people who don’t know better. After all, who hasn’t had a nosebleed? Right. But HHT is not about your run-of-the-mill nosebleed. And it isn’t just about nosebleeds, which are bad enough. HHT is about missing capillaries, about tiny abnormal blood vessels (telangiectasias) that rupture and can lead to anemia, about large abnormal blood vessels (AVMs) which can be life-threatening. It’s about hearing doctors say “I’ve read about it but never had a patient with it.” It’s about all the ramifications of having an atypical vascular system.
For me, it’s been about learning not to take ibuprofen or fish oil supplements or melatonin, about watching my intake of fish, raw cranberries, red quinoa, famotidine. About having ocular migraines. About avoiding vasoconstrictors. It’s about learning that HHT was the likely reason for my post-tonsillectomy hemorrhage circa 1948.
It’s about living with and aging with a disorder largely unknown to doctors and dentists but sharply relevant to their treatments and procedures.
It’s about wondering if small hemorrhagic strokes contributed to my father’s dementia, and if I have passed this on to my children and grandchildren.
It’s about bleeding from my nose and mouth, and knowing that I might some day bleed from ears and face since I also have telangiectasias there. It’s about knowing that internal bleeding is possible. It’s about knowing I am luckier than many others with HHT.
June is HHT Awareness Month, and this is my part.