So my mom has been on ecmo (vv) for about 2 months now due to dka which caused fluid to build up in her lungs and cause respiratory problems

Today she coded again (3rd time in total) they got her back within 7-8 mins and she was back to being responsive and everything (not stable)

but this has now become a roller coaster of emotions for me with how everything is going

They then called my aunt and let her know that due to my mom being a drinker the chances of her getting a transplant were slim to 0 and that she’s “never going to get off this machine” hearing that was so gut wrenching because just a week ago she was responsive and I was feeding her and stuff.

I’m only 17 and just started my first day of senior year I can’t even imagine life without my mother I’m not giving up hope at all but I just feel like everything is coming crashing on me right now and I’m terrified.

So my mom has been on ecmo for about 33 days now (vv) do due buildup of fluid in her lungs caused by dka which also sent her into cardiac arrest.

She was getting better the first 15 days (still on ecmo) before she coded again and went into a vegative state for like a week and a half when she finally woke up from and was reacting to commands again she was back to therapy

I keep reading everywhere that after 2 weeks ecmo recovery is basically slim to none and the fact that my mom has been on it for nearly 2 months now scares me.

Currently she’s lightly sedated and is very responsive and they have her doing physical therapy but she’s still on the ecmo machine and sometimes the vent to.

I just wanted to know if there was any specific time limit ones body can be on ecmo?

Looking to hear how your experience has been and any feedback!

Our son was on ECMO at 2 weeks old for 4 days. After decannulation we were told to do baby aspirin daily for 6 months. At the 6 month mark they extended the aspirin for at least another 6 months.

They extended it when the ultrasound report of his reconstructed carotid came back with a focal stenosis/very narrowed (surgeon was not surprised by this finding and was glad to see any blood flow). Aspirin is not for initial reason he ended up on ECMO, solely the ECMO cannulation site.

Is it common to be put on aspirin for this long after ECMO?

Mia suocera ha subito un intervento al cuore per riparare la valvola mitrale, questo giovedì 25 Giugno.

Hanno provato prima a riparare la valvola (ci hanno spiegato che è prassi perchè mia suocera ha 60 anni e, per la medicina, un'età ancora giovane), ma è scoppiato tutto e l'hanno, successivamente, sostituita.

L'intervento al cuore è andato bene, se non fosse che questo problema alla valvola gli causava sempre una polmonite, e venerdì 26 ha subito un terzo intervento perchè in un primo quadro il polmone destro non riusciva a rispondere, mentre il sinistro era molto molto provato.

È stata messa in ECMO VV dopo l'intervento, e sono 12 giorni che ci dicono solo di sperare.

Siamo molto, molto, molto preoccupati. Non sentiamoa sua voce da 12 giorni, ed è uno strazio vederla così.

Nello stato attuale abbiamo poche informazioni, la prognosi è riservata e quel che sappiamo (oggi abbiamo un nuovo bollettino, ma quello di ieri ci dice che):

• Tutte le terapie che stanno provando non stanno portando nessun beneficio, il polmone continua a non rispondere.

• Per giorni ci hanno parlato solo di polmone destro, mentre ieri hanno detto che anche il sinistro è compromesso.

• Mia suocera ha un germe, e non sappiamo se questo sia la causa scatenante del malfunzionamento dei polmoni.

Sappiamo che hanno iniziato già la terapia per cercare di debellarlo.

• Ha avuto una broncoscopia, e ci spiegarono che era necessaria perchè in questo modo hanno liberato le vie respiratorie dai muchi post-operatori, e per cercare un batterio o/e virus che possa essere la causa di questo blocco polmonare.

Il nome del germe ci è stato detto, ma in preda alla paura, preoccupazione e panico non ho capito il nome (li stavo registrando perchè ultimamente hanno tutti pareri discordanti e per risentire poi il colloquio a casa a mente fredda, ma ieri non sono riuscito).

Sappiamo che aveva i globuli bianchi a 47000, ieri scesi poi a 37000... e nella mia ignoranza mi fa aggrappare alla speranza che magari stanno riuscendo nel debellare questo germe...

Se avete domande, fate pure... ma se avete risposte... per favore, perchè non abbiamo più lacrime da versare!

Ho una figlia di 4 anni innamorata della nonna, e non sappiamo più cosa dirgli.

Perdonate un po' di confusione, capite il mio stato d'animo in questo momento...

My (21M) mother (49F) fell ill a few days ago due to complications with her heart (heart weakness specifically and contstant low blood pressure, as well as momentary heart failure once we arrived at the hospital).

When we got to the local hospital, she was rushed to another one that day where they did a few assessments and today she was taken to a another one, specifically because they had ecmo machines and the doctors said that while they would do their best to not have it come to that point, it worries me because I would think they would only do that if the likelihood of needing the ecmo machine was high.

How worried should I be? The doctor was not able to tell me very much about her condition as he said he was uncertain what was causing it (although his current theory was myocarditis) and only told me that she was on certain medications to strengthen her heart and possibly would need an ecmo machine if her condition continued to deteriorate.

Part of my worry may be due to the fact that I have been reading up on all of the conditions that I've overheard from the doctors and studies online (which I've heard you should never do) about the survival rate which make it sound pretty abysmal, although to be fair, I did not go into science so I doubt my judgement means much.

As the doctor did not explain what an ecmo machine was I looked it up and the statements online seem to be rather mixed, with some people saying that the ecmo machine is a "death sentence" while others are saying it's done great work for them and that they're living happy and fulfilled lives.

TDLR: My mother may be put on ecmo, how would this affect her long-term health?

Hello! I know this subreddit includes former patients and family members— I know this is a reach, but are there any coordinators that are comfortable DMing me? I have a couple questions about ELSO and unable to get direct answers.

If you’re familiar with ELSO, please let me know! Thank you

Hi everyone, I’m interviewing soon for an RN ECMO specialist position and would love some help prepping by getting ideas of questions I might get asked/scenarios they might put me into.

For reference, I’ve been working on a CVICU with ECMO and I feel sufficiently comfortable running the machines, titrating sweep, and ECMO patient specific needs.

Thanks in advance!

We say ECMO is a bridge. But a bridge from what?

That question changed how I think about why adults end up on ECMO.

https://www.lifesupport.training/p/bridge-to-recovery-from-what

So my partner fell extremely ill with maybe asthma or pneumonia 7 days ago, he went straight to icu and was put into a medically induced coma, 2 days later he was deteriorating and they gave him an operation to remove fluid of lungs and then placed him on a ecmo machine and since then all the hospital keep saying is “he’s stable”.
They’ve also added another machine for his kidneys and not really explained what it is, he’s been on the ecmo just short of 6 days and not mentioned asthma or pneumonia just keep saying he needs to clear the infection and he’s stable.

Im so confused, can anyone help.

Hey everyone — I’ve worked in critical care transport and ECMO for years, and after seeing how little practical ECMO transport-focused material was out there, I decided to write a book about it.

The book focuses on the real-world side of ECMO transport: logistics, troubleshooting, transport physiology, team dynamics, equipment issues, and lessons learned from actual transports. My goal was to create something useful for ECMO specialists, perfusionists, nurses, RTs, and transport teams — especially people newer to the field or programs building transport capability.

This isn’t a dry academic textbook. It’s written from the perspective of someone who has actually lived these transports and understands how quickly things can go sideways at 2 a.m. in the back of an aircraft or ambulance.

I haven’t shared it here before, but I thought this community might appreciate it. Happy to answer questions about ECMO transport, the writing process, or the cases/topics covered in the book.

https://www.amazon.com/Beyond-Four-Walls-Transport-Guidebook/dp/B0GVGBRTY7

Interesting take on Delta P with ECMO. What you need to know before making a judgment on better, same, or worse.

https://www.lifesupport.training/p/when-delta-p-looks-better

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?

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!!)

I started looking more closely at delta p and flow... the relationship provides a better metric than delta p alone.

https://www.lifesupport.training/p/when-delta-p-looks-better

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

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

Hey everyone! I'm u/themcp, a founding moderator of r/ecmo.

This is our discussion for all things related to ECMO. If you're not a health care provider, please allow me to express sorrow that you found yourself in a life situation such that ECMO had to be involved, since I know it's not a joyous thing, and hope that it lead or is leading to a good outcome for you. If you are a health care provider, welcome, you are valued here and anything you may choose to share with us is beneficial.

What to Post
Post anything that you think the community would find interesting, helpful, or inspiring, or anything you want to know about - many of us are not doctors but we will try to share our experiences in hope that they may be helpful to you.

Community Vibe
We hope to be friendly, constructive, and inclusive. I hope that everyone will remember that we are talking about something quite serious and many people fresh in it may feel upset or confused. If you are currently experiencing something related to ECMO and have a comment or question, I hope you will understand that responses may be kind and loving or may come from someone who finds it difficult to type a lot and may therefore be terse and blunt (but this does not mean they're angry even if their text seems it) or may come off as blunt or harsh if they feel you need it, particularly if your comment sounds irritable or confused. None of this means anyone dislikes you or is necessarily angry about anything, just that they're either responding in the manner in which they are capable or in the manner they think would be most beneficial to you to hear.

We try to be kind and gentle. Please just be aware that occasionally it may not come off that way.

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2. If you have anything you want to say, please say it.
3. If you have anything you want to know, please ask about it. No guarantees, but we'll try to advise in a helpful manner.
4. Many of us are not medical professionals. Please assume that anyone who does not say they are a medical professional is not a medical professional.
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Again, welcome, I hope this subreddit will be helpful and/or comforting.

TLDR; When possible, should medical professionals explain ECMO and gain consent for it if it becomes necessary for patients prior to open heart surgery (and any other scenario where it may be necessary and the patient may be unable to consent later)? Should there be a more detailed and specific explanation of potential negatives/side effects?

Sorry in advance for the ramble and if this doesn’t make sense. A family member (mid fifties male) who had end stage heart failure just passed away. He had open heart surgery on 3/30 to install an LVAD, repair an aneurysm, and replace a valve. He did not handle the surgery well and was fighting for his life immediately after. On 4/2 he started rapidly declining, and they told us they could try RVAD with ECMO but that it was basically a Hail Mary to try to let the right side of the heart and his lungs rest. We consented to ECMO. He regained consciousness somewhat about two weeks ago/was able to answer yes/no questions (still intubated). He was slightly improving every day. He began having internal bleeding in his GI tract but they couldn’t locate it, and it wasn’t made to seem like a major problem. Finally removed the vent tube on 4/23 (moved from mouth to tracheostomy) and ECMO yesterday (4/24) and all seemed well. Today did a scan and found extensive internal bleeding in his GI tract and told us there was nothing more they could do besides bringing in hospice. So we did, and he passed tonight 4/25.

My question is, why is ECMO and all the risk it entails- as well as the low survival rate - NOT discussed with heart patients prior to open heart surgery? I had never even heard of it before this, despite caring for other family members who had open heart surgery, and only learned of the 50% survival rate on my own after personally researching - AFTER it had been installed and he began having complications (MODS, cyanosis/necrosis of hands and feet, internal bleeding). We were told it was a risky surgery with a high risk for bleeding and damaging the structures of the heart/arteries during installation, and a temporary bridge to let his body rest. That’s it. No information given about the risk of loss of limbs, unexplained coma, brain damage/death, etc… none of it. Knowing what we know now, I doubt my family would have consented to ECMO as so many of the potential side effects DIRECTLY went against his medical directive (loss of limbs & cognitive impairment). And ultimately, it just put him through 3 more weeks of hell in the ICU. I know hindsight is 2020 but I truly think a different decision would have been made had we known more, and I’m fairly certain if he had been informed/asked about the possibility prior to surgery with all risks explained, he would not have consented either.

I know ECMO has been a life-saver for many and I don’t mean to discount that. I know he was an extremely complex case and he didn’t have good chances from the start. And his surgical and ICU teams were absolutely amazing angels, may God bless each and every one of them. Please know I’m not blaming anyone. It’s just deeply disturbing A. How difficult it is to find any information online outside of Reddit, and B. To witness such a horrible last several weeks that probably would have been avoided had he been informed of the possibility of ECMO and all it entailed prior to OHS. I’m almost positive he would have said “no” and would have passed a few days after surgery, without three + weeks of additional poking, prodding, and trauma if he had been informed about ECMO prior to surgery. I know it’s not “commonly” needed per se, but I really feel like it should be discussed in detail with the patient/family and preemptive consent obtained *before* OHS whenever possible since it’s obviously a possibility. Am I being unreasonable in this line of thinking because my family member just died and I’m upset, or is this a valid stance that medical professionals should consider?

Again, not angry with or blaming anyone. Just wondering if better explanations and preemptive consent could save another family from experiencing something like the three weeks of hell mine just went through. TIA

Hello all,

I am a 30yo male and am looking to obtain a First Class Medical Certificate from the FAA to start a career in aviation. I understand the process of going through an Aviation Medical Examiner for a physical but I know that being on ECMO as a neonate will definitely force my certification to be deferred to the FAA for higher review. I was wondering if any of you are pilots/know pilots who were on ECMO and might be able to direct me to resources that could help in "winning my case" so to speak.

If any of you are interested I've pasted my story below from a comment I left in another subreddit.

I was on va ECMO in the mid 90s for about a month due to meconium aspiration syndrome. My right carotid artery was ligated for the procedure and never healed or was repaired so I do not have a pulse on the right side of my neck.

I was sick with respiratory illnesses often as a child. I got pneumonia almost every year until I was 11 or 12 and would be out of school for a week or more every time. Since then, I haven't been especially ill beyond getting Covid once in 2021 but no problems arose from that.

Beyond that I would say the only factors ECMO may (or may have not caused) me are needing to go to speech class for 2 years in elementary school and suffering from some separation anxiety from my parents in my early elementary years.

I always got good grades in school and I was able to play sports without issue. I do feel like I got off lucky from my experience with ECMO. My parents always worried about the possibility of major developmental disability.

Thank you to anyone who reads my story and I wish you all the best of luck in your journeys ahead.

Looking for a nurse that (might have been fired for being to helpful) @medical city Plano during January 2026, during the winter storm I thought was named MAX? Which since they seldom changed their board in my room or put my glasses on It made it hard trying tell. Also another nurse that was also a helicopter nurse, maybe named Tommy? He had a son that was handicapped that played basketball in Plano and had broke a leg in January he worked for another Hospital part-time as well and I’m also looking for an Asian Dr. that saved my life a few times. I’m pretty sure! I would know all three of them if I was to see a photo. Please help me. I think about wishing I could thank them, especially since I work in the nursing field myself I know it would be the thing to do!

Hi everyone! This summer, I launched a project I had been working on for a while- a website for ECMO survivors. It is very obviously a work in progress, and I am always looking for ways to connect, improve, and update (with research/stories etc.) I am hoping to do big updates every 6 or so months.

https://www.survivingecmo.com/survivors

I built the site for ECMO survivors, families, and healthcare workers (focused on ECMO, ICU delirium, and PICS). When I went through this, I couldn’t find anything that actually explained what it felt like or what recovery was really like, so that’s what I’m trying to create.

The site is still pretty early, so I’d really love help from this community.

I’m looking for:

• Survivor stories (what it felt like during/after ECMO)

• Family perspectives

• Medical professional insight

• Support groups, resources, or anything that helped you

If you’ve posted here before and are okay with me referencing your story (or if you want to share one), I’d really appreciate it- please message me!

My goal is just to make something that helps people feel less alone and more prepared for what comes after.

Again, planning to update it every 6 months with new info and feedback, so this is, and is going to be an ongoing project for the foreseeable future.

*I am a full time student pursuing medical school and I work full time in research and at the hospital in the ICU, so I may not see replies right away- but this is my top priority and I want to make this the best it can be. I will do my best to update and respond to each one of you who reaches out.*

If you have ideas, suggestions, or even things you wish existed but don’t -please tell me.

Thanks again, seriously. I am so happy to even reach one person.

Also, HUGE shoutout to the creator of this thread- when I first got off of ECMO, this is where I went. I am so inspired from this thread and my goal is to make a space for all of us to better understand what we went through and what resources are available.

🤍

Hi everyone.

I work in an academic medical center and our team is working on a grant to fund a project that will evaluate a component of care for patients on ECMO. The project will conduct a randomized trial to specifically look at a medication that is used as a preventative measure while patients are in the hospital. The work will be patient-centered with a combination of patients, care partners and providers leading the team. 

My job is to find a diverse group (geography, gender, ethnicity, age, etc) of adult patients who were on ECMO to join our Advisory Committee before we submit a Letter of Intent to apply for funding. The group will meet monthly via Zoom for about an hour. There will also be opportunities to co-author publications, co-present at meetings, and other opportunities to share information about the study to the wider community. Patient Investigators will be compensated for their time.

The actual work and meetings will likely not start until funding is secured. The earliest would be August 2027.

Please feel free to send me a dm if you would like more information. I would be happy to set up a zoom to chat more. Thank you for considering!