hi everyone, i was diagnosed with my avm (right pulmonary artery) about two months ago, struggling daily with severe shortness of breath, mild chest pain and a heartrate of 130, it’s triggered by any physical movement. I still have not been treated, but I have been through every test you can imagine. My Avm is a quarter of an inch big, my pulmonary artery is two times the size of a normal one. This terrifies me, being that I have no idea what would happen if it were to rupture. Doctors have such limited information because of how rare mine is. I’m a mother of two little ones, and I can barely keep up. Praying daily for other options. They told me Coils and radiation aren’t an option because of where it’s located & that they’d have to cut the artery & remove 20% of my lung. If anyone has any incite at all please let me know, I am desperate for more information while we wait to schedule with another hospital out of state. Thank you in advance!!
Welcome! It’s fantastic that you found us and I hope we can find you one or two people who have gone through similar.
I think we’ve got a handful of @PulmonaryHeartHHT members with a pulmonary AVM. By this invitation, I hope everyone with a PAVM might share their story with you.
My AVM is in my brain, so quite different from you.
Ask anything you want. If we can help, we will.
Very best wishes,
Richard
I had a PAVM treated after it caused a stroke about five years ago. I had no symptoms and had never heard of HHT or PAVMs, so I would say it is definitely worth treating if possible to avoid issues in the future. The procedure was actually fairly simple and relatively painless. It sounds like your PAVM is a little tricky, however, so it makes sense to talk to some HHT/PAVM experts (if you haven’t done so already). I would highly recommend Dr. Trerotola at UPenn or Dr. Pollak at Yale. Even if that is too far for you to travel, I would speak to one of them on the phone (if possible) as they probably have the most experience treating PAVMs.
Amazing, that does make me feel so much better. Where specifically was yours located? And thank you for the doctor referral I will definitely look into that!!!
I second this. AVMs are rare things but PAVMs are rare among rare. Go where the expertise is is definitely the right thing to do.
I don’t specifically recall exactly where my PAVMs were located - I believe the lower left lobe, but I could be wrong. The larger of the two was actually greater than 1cm while the smaller one that they coiled was probably ~3mm or so. I have a couple of very small ones (less than 1mm) that they cannot coil as they are too small. As mentioned, I had no real symptoms but my blood oxygen level was sub-90, so that would have been a tell-tale sign if I had picked up on it.
I would encourage you to check out the CureHHT website as they have good info on there and a listing of all the HHT Centers of Excellence. A number of those centers are very focused on PAVMs but, as mentioned, I believe that Penn and Yale are probably the most experienced. UCLA and Washington U. (St. Louis) are also high volume PAVM centers, I believe. While your PAVM may be “rare” to the docs at your hospital, it may be common for those HHT docs. I live near Boston where there are a lot of top notch hospitals, but I decided to drive 3+ hours to Yale to get my PAVMs treated as even many of the Boston docs are not specialists when it comes to HHT and PAVMs.