Hello all,
My name is William Murphy, I’m a 47 yr old Irish male diagnosed with HHT some 12 years ago when I had a “coil” or “balloon” treatment on my right lung. Prior to that any form of exertion would see me choking on copious quantities of “the red stuff” … touch wood only minor episodes in that particular department ever since. As I recall not a particularly scary experience either, my one abiding memory of it being the moment I sat up on the operating table after the procedure, pulling down my gown to try and rescue some dignity (they go in through the inside of the top of your thigh. At least they did then), when I realised I was staring straight out through an open door into a large corridor positively “throbbing” with the traffic of trainee nurses nearly all of them turning to glance in, needless to say I didn’t hang around for a coffee after that.
Sorry … I digress bleeding now apparently from the small intestines and recently had an “enteroscopy” which, according to “them that know”, revealed multiple proximal AVM’s which they duly cauterised with some kind of laser. Just after that I had the enormous pleasure of a “colonoscopy”, same kind of procedure as before, just the wrong way up the motorway if you get my gist, but thankfully that was all clear. Still a “red stuff” leak in there somewhere so now they’ve promised me ( if they can get the necessary funding ) a “capsule endoscopy” to investigate the parts other “oscopies” cannot reach! ( What was the name of that film when they shrank the submarine, and all who sailed in her, and injected all into some poor devil?).
Any way apart from that I’m hunky dory… I only just discovered this site a couple of days ago, never found no family history, and haven’t had a nosebleed in 35 years… still “them that know” tell me I have this thing, so so be it.
