r/ecmo

Update: I was hoping for a big update today from neurology to see how bad the strokes were. He had all his brain testing and I just spoke with neurology they explained all the strokes and it’s a lot of them in multiple places.
They don’t have a clear path of recovery because they think him not taking a big hit is promising that’s better to have small strokes than a big one and he is on medication for seizures and to prevent more strokes but they can’t promise anything since this heart surgery was so long.
I expected to get more of a clear answers of when he’ll be able to fully wake up but they don’t really know. They basically try everyday to lower sedation to check his reflexes and see where he is at until he meets criteria to get the tube out but today he already didn’t so we wait to see another day.
He said stimulation is helpful and all that. Everyone is very hopeful but everyday is another day he is here is hard.

My husband 60 M was diagnosed with having a bicuspid valve in December 2025 and also an aneurysm. After doing our research and getting a second and third opinion, we chose the facility and surgeon/team we felt most comfortable with. His surgery to replace the valve and an aortic root replacement was last Thursday and things did not go according to plan. They replace the valve but the aneurysm was bigger and the tissue was very unstable (they’ve suggested genetic testing because they suspect he could also have a connective tissue disorder or something like that) and he bled a lot. The surgery was supposed to be 4-6 hours but it ended up being 10 plus and they couldn’t close him for a while because his bp was too high. He was on ECMO but I don’t know how long.
He has been in cardiac recovery since Thursday night, still intubated because every time they try to wean sedation he becomes agitated and can’t follow prompts. He can barely follow some commands but not enough to get the tube taken out. Now they think he has had small strokes all over his brain, they’ve done CT scans and EEG, he is getting an MRI soon. I’m trying to stay hopeful if anyone has experience with this, it would be helpful.
We knew recovery was gonna be brutal but never pictured complications like this.
TIA

I found out that different centers, teams, and even individual providers may use different language for the same part of the ECMO circuit.

https://preview.redd.it/apwuthdqpd0h1.png?width=1249&format=png&auto=webp&s=64376581c934d5c3b3f5f730a2a1ecb45a9f4586

https://www.lifesupport.training/p/ecmo-terminology

Hi!!! I had a few questions in regard to ECMO. I was placed on VA ECMO about two years ago. The leading factor being that I got myocarditis which then led to cariogenic shock. The whole time while I was in the ICU I was never really explained what ECMO actually did. All the nurses told me was that it was just a machine that lets my heart relax/gives it a break.

The reason why I am here posting on this sub is because I don’t truly get what it does. And every time I try to ask my family about that time in my life, well no one wants to really talk about it. Like it’s taboo for me to even mention my time at the ICU/hospital. Like if I was placed into ECMO does that mean I was dying? Because all I know is that they told me that it was either ECMO or that I would need heart transplant if ECMO failed.

My other questions are is surviving ECMO rare? And does anyone else get pain in their inner thigh from where the tubing was? (I’m not sure if this counts as more info but the only ECMO posts I see tend to be people in their 50’s and newborns. But this happened in my early twenties! Im closer to my mid twenties now!)

Thank you so much for taking the time to read my post! I just don’t really have anyone to talk to about this. And the only ECMO support group I was invited to only reached out once after my stay.

(P.S. a bit of a dumb question, but does anyone know if they have any I survived ECMO! Shirts? Pins?,

Again I’m not sure if it’s rare to survive. And even if it’s impressive to survive from. But if it is I would like a pin or something to commemorate that time. Since it was one of the most traumatizing times in my life. And to show that I made it through!!)

So
Let’s say a patient on VA ECMO, He goes into V-Fib, the ECMO Circiit and pump as well as well as the oxygenator are working properly! How often do you administer a shock
That rhythm? You do not perform CPR, ECMO Is taking over the circulation. Ehat protocol do you use?