In case you visited this site and have seen that I’m not updating much, it is because I’ve been offline more than online. Wondering if I should declare this and say it out loud, but yeah, I decided to let you know.
I have a genetic disorder called HHT, Hereditary Hemorrhagic Telangiectasia (what a mouthful!)
It is also known in some countries as Osler-Weber-Rendu.
Osler-Weber-Rendu syndrome is named for the docs who researched this condition in the 1890’s. They discovered that issues with blood clotting don’t cause this condition, which was previously assumed. Instead, this condition is caused by problems with the blood vessels themselves.
HHT gives me unpredictable nosebleeds. Sometimes it is a trickle, other times a flood. Half the time the blood goes down my throat. I can be bleeding like a river, but have a conversation with you and you wouldn’t know by looking at me.
Arteriovenous malformations are an abnormal tangle of blood vessels connecting an artery to a vein, directly. No connecting capillaries. This means powerful pumping arterial blood gets shoved into the weak little veins not used to so much pressure. This causes hemorrhages at times, but it always disrupts normal blood flow and oxygen circulation.
There are 100 pulmonary arteriovenous malformations in my lungs, and dozens in my GI tract. One big bleeder in my stomach. A few on my lower lip. I’ve had about 14 surgeries over the years – and so much technology in my body, I’m amazed I’ve only been stopped by TSA for metal in my chest only once.
These past few months, I’ve had another surgery, this time abdominal; and it was a biggie.
Yesterday I spent time getting an iron infusion at UCSF’s hemophilia and bone marrow center. Wrapped in warm blankets, sat in a massaging recliner chair, I got the “juice” humans need to function.
I hope to be back to working full time, but am always available as a resource if you want to learn about media making, aesthetics, live streaming, video marketing.
Thanks for understanding. I’ll be back soon.