Anyone have experience with HHT or Osler-Weber Rendu?

Posted by rexie @rexie, Jul 10, 2020

I have an inherited condition called Olser-Weber Rendu. It’s a bleeding disorder that both my mom and my grandfather died from complications of this disease. I am 62 and I am found to be anemic often. My mom died at 70.

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olivine | @olivine | Jul 20 1:08pm

It was a pulmonary AVM, I had to go to St.Michaels Hospital in Toronto ..they are an hht hospital, I don't really know how they did the procedure, I believe they said they redirected the arteries, they made it so I was less of a risk from heart attack and stroke, so sorry to hear of yours, I hope they can fix them for you too

Colleen Young, Connect Director | @colleenyoung | Jul 25 5:26pm

In reply to @olivine "It was a pulmonary AVM, I had to go to St.Michaels Hospital in Toronto ..they are..." + (show)

I'm tagging @amartin945 to make sure they see your reply.
@olivine, how was your recovery after the procedure to repair the pulmonary AVM? How are you doing now?

olivine | @olivine | Jul 31 4:41pm

In reply to @colleenyoung "I'm tagging @amartin945 to make sure they see your reply. @olivine, how was your recovery after..." + (show)

I was good after the procedure, just had to rest for a couple days then back to normal routine, just no heavy lifting for a while, I am doing OK, just feel so alone here...no one has ever heard of this and every dr or hospital I go to here, no one knows about it, it is actually a bit scary because they are unaware of how to treat this...I go for regular testing every 6 months to make sure everything is OK in Toronto

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