Hi, Sue~

So happy your friend is still around. Thank you so much for sharing. It makes me hopeful.

Of course, once I found out that I had an AVM I put my googling fingers to work. I think the main focus right now is to take care of the one AVM before it causes any other problems. I am so hoping I will feel better once that lobe and the supply to the AVM is gone. It has been frustrating knowing that my lungs look better but I feel worse. I am assuming since I have not had symptoms of one anywhere else that they are thinking it is the only one. I am not anemic so I don't think I have any bleeds going on anywhere else. However, once I get this surgery behind me I plan to ask about genetic testing for HHT. I have been reading and only a low percentage of people have a pulmonary AVM and don't have HHT. I'm not sure if you would categorize mine as a pulmonary AVM since it is on the airway and not in the lung. My pulmonologist at NJH says it is the first he has seen on an airway.

Thanks for all your support, Sue. You are blessing to us all.

~Echo