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In our blood

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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.

8 thoughts on “In our blood

  1. Thanks so much for the HHT post. Well said. Been there. Thought (and experienced) that.

    Quick question: Where did your references to famotidine and quinoa come from? I can’t find any reference to them as related to HHT on the web. Is this from personal experience? My experience, for example, has shown me that I can correlate a bad nosebleed with consumption of gin. So far, my cost/benefit analysis has convinced me not to give up the pleasure of my twice-monthly martinis. Maybe I’ll change that decision at some point.

    Thanks for heightening HHT awareness.

  2. Dan —

    Thanks for your comment, most especially for your reference to gin. That was my father’s favorite, so I think it’s just as well he never knew he had HHT!

    All my references to triggers are from personal experience.

    Maureen

  3. Pingback: Connections: January 30.17 | Oddments

  4. 58 year old here with HHT (father, his father, a sister, niece, 1st cousin etc.). Cerebral only, with facial telangiectesias. My dad’s dementia was I believe, from his HHT so am not looking forward to my future.No nosebleeds etc. but I’ve had 2 strokes (minor and later, a significant one). No treatment so to speak. Am gainfully employed with a little speech difficulty at times but mostly not noticiable. I take fish oil alll the time and ibuprofen (rarely). If you take no NSAIDs, then what do you take for headaches? I’ve not seen a neurologist in years. They’re worthless from my experience. No kids so haven’t passed this on.

    • I’m sorry to hear about your strokes! The HHT has brought you some serious worries. For pain, I take Tylenol. Never as effective as NSAIDs, but much kinder to the blood vessels!

      • Thanks for that. Tylenol can be somewhat helpful but like you noted, not so much. Am experimenting with CBD but apparently it takes a fair amount to get any pain relief (over 100-200 mg) and it’s very expensive. Am not a pot smoker so won’t go that route, even though that would be cheaper and probably more effective. Pray your HHT doesn’t lead you down the dementia road like it did your dad.

      • I’ve been having trouble sending a reply to you. I tried twice yesterday; I know the first one didn’t go anywhere, and I’m not sure about the second one. Just FYI.

  5. I tried to respond earlier, but for some reason I couldn’t. Let’s see if I can now. Have you checked the HHT website (CureHHT.org)? Maybe there would be some suggestions there for pain relief with HHT. As for my following on Dad’s path, I guess time will tell. Thanks for your good wishes.

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