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New to This (PAVM)


#1

Hello everyone, I am new to this so I apologize if I dont do this right. When I found out about my PAVM the doctors found it bu accident. I went in originally to get a CT scan of my kidneys and bladder, the CT Scan caught the lower parts of my lung and they caught my AVM through there. I went to see a specialist and they made me do and MRA, a breathing test and a watch to monitor my oxygen levels at night. My breathing test and oxygen came back just fine, however they did inform me that if the AVM in my lung was not address it could lead to some fatal problems. There really isnt a lot out there about people who have had AVM procedures until i found this group, and i wanted to know if having the procedure has improved your life? Are you able to breath better? Do you feel more energy after the procedure? I guess im just nervous of undergoing this procedure if anyone can help i would greatly appreciate it! - thank you


#2

Welcome! Its great you’re here with us and that you made the connection with the Pulmonary/Heart/HHT Member group. You will find a great group of people here with a wide range range of experiences dealing with a variety of AVM related matters. Again welcome! Take Care, John.


#3

Thank you for the warm welcome! I look forward on being part of this group. I was glad to be able to find other people like me. To be honest there really isn’t a lot of support groups out there or thread with people who have AVMs. It’s nice to know that there is at least one. :blush:


#4

Welcome! I admitted you to the forum yesterday and put you straight into the PAVM group. I hope by doing so that one or two of our PAVM members – we don’t have very many – can answer some of your questions.

If not, I might give someone a nudge.

Or, you can look in the Pulmonary, Heart and HHT category for people’s stories that relate to yours.

It’s great to have you with us. I hope we can help and support you.

Best wishes

Richard


#5

Awesome thank you!


#6

I learned the hard way that I had multiple PAVMs as I had a stroke about two years ago. It came out of the blue and I otherwise had no health issues. As it turned out, my blood oxygen levels were low (below 90) as a result of the PAVMs but that is the kind of thing that nobody picked up on and my body simply adjusted to it over the years. Thankfully, I recovered well from the stroke but once a clot gets through the PAVM it is all luck as to how it plays out - it could have been much worse for me.

Getting the PAVMs treated/embolized was a relatively simple procedure. As long as the PAVM is large enough (feeding artery of ~2mm or greater) they can get it done. I would recommend going to an HHT Center of Excellence to check if HHT is involved (it was in my case… and I had no idea). Even if it isn’t, those centers probably have the most experience treating PAVMs. It’s not a difficult procedure to go through or recover from, but you definitely want an interventional radiologist who has done it dozens/hundreds of times and knows what they are doing.


#7

Welcome to site very helpful information on PAVM. :grinning: