PFO anyone?

[JT_Marlin]

My apologies sincerely for monopolizing this forum.

Curious if anyone here perhaps had a TIA and/or was diagnosed with a PFO (hole in the heart - 25%ish of humans have it) - or an AVM.

If so, did you have it closed/dealt with? If not, why not?

[Sabine987]

Hi, I was diagnosed with PV and a minimal PFO in 2016 secondary to a pulmonary embolism and a few TIA’s. I was advised not to close the PFO as low dose aspirin should be effective enough in preventing blood clots. My counts were a little above normal but I felt well so for 3 years, I was only on daily aspirin. As my hematocrit suddenly started to rise last spring (from 50 to 57 in only one month), I started Pegasys in may 2019 (at 45 mcg biweekly, increasing to 90 mcg weekly) and needed five phlebotomies in the beginning. The WBC and platelets got in range within 3 months. Even the RBC count is now slowly coming down which I’m grateful for, it took 7 months before they started reacting. For me it’s a great drug with hardly any side-effects apart from being tired. As the blood values are slowly getting in normal range, the PFO doesn’t really bother me anymore.

[Uzza]

I have had a TIA & AF.

Cheers

[Giraffe84]

I had a TIA last May, and they have found a PFO. I’ve been referred to discuss having a closure but I’m terrified so watching your thread with interest!

[JT_Marlin]

Thanks Giraffe - they've definitely found bubbles passing from the right to left atrium for me - I've had two TEEs and one TTE. There is a chance though that it was an arteriovenous malformation (AVM) which I just had a CT for to rule out.

I'm of the mind to close it - I'm relatively young and with ET and thus the increased propensity to clot - I figure why not take one medical issue off the table.

I'll follow up here when I learn more about my own situation.

[Giraffe84]

Thanks! I had the bubble test which confirmed it and then a TEE but I don’t think I was sedated enough as I fought it, so they couldn’t really get many images. I’m just waiting to see someone now about next steps but they seem to be saying closure. It’s scary isn’t it, like you say being relatively young ( I’m 35) it’s a lot to think about.