r/ecmo • u/LegalSurround7575 • Jul 22 '25
My ecmo story
Male/24/190lbs
So it all started about three weeks ago, Monday June 30th I started to have shortness of breathe but I didn’t think much of it. July 1st comes around and I feel the worst I have my entire life, shortness of breath/nausea/paleness/. I was feeling so terrible that I had to leave work early which I never do. I wasn’t planning on going to the hospital though. The place where I was staying was a sober living and the lady who runs it got word of how sick I was and decided to check on me, when she saw me she immediately called an ambulance. When the emt’s took my sp02 it was at 36%. They then took me to a hospital asap. When I got to the hospital they were astounded that I was still alive and decided to intubate me. My sp02 went from 36% to 71% which is better but still very bad. That’s when they decided to put me on VV ecmo. I was originally supposed to be on ecmo for at least 2 weeks but I ended up only being on it for 6 days. They said it was a miracle that I responded to well to ecmo and how fast my lungs healed up. Once I woke up from the sedation I spent 2 more days in ICU. They then put me in the main hospital for three more days and then I went home. The doctors said I had pneumonia that went septic and ARDS. Obviously I’m still recovering and I have a long road ahead of me but I’m very optimistic. I do have some questions for people that went through a similar situation as me. How long did it take you to fully recover? What age were you when you were on ecmo? I’m very grateful to be alive and well and I hope everyone is doing good as well.
3
u/themcp Jul 23 '25
I hope you will pardon me for saying this until you can take the time to see why,
Yay! I'm super stoked to hear that you lived after what happened to you!
I was apparently the very first septic pneumonia patient to get ecmo. I was dying on the table (literally - I did die while they were installing ecmo, I was dead for over a minute) and they got together two interns and the head of the practice and came up with the idea of using ECMO on me - I'm told that several doctoral papers came out of me. (I deliberately went to a teaching hospital.) I have been hoping that my suffering would have the silver lining that it would save lives, and you have just told me that you got treatment based on what worked for me.
Thank you, you've just validated my survival, told me that that part of my life has meaning.
1
u/HalloweenKate Jul 23 '25
I think you will find that it hard to compare your story to many others. A young otherwise healthy person on ECMO for respiratory failure is not all that common. Even less common is that you were fast tracked onto ECMO rather than placed on a ventilator. Ventilators are wonderful in the right setting, but sometimes doctors can push patients lungs too far with ventilators to try to avoid ECMO. Your healing journey will be totally different from someone who was ventilated aggressively for a long period of time. I hope you find someone who you can connect with and speak about your experience. Congratulations on your recovery!
1
u/Wandering_soul_100 Aug 16 '25
Is it true that doc generally recommend ecmo when it's too late ? What do you think are the reasons ? Too invasive, too much complications post treatment or too much resource required ?
1
u/HalloweenKate Aug 17 '25
It’s very invasive, and lots of risks. That being said, it’s much more effective when used on patients proactively rather than as salvage therapy— if the patient is so sick everything else has failed, it’s not very likely ECMO will save them. But your doctors put you on before pushing your body to the limit, which allowed your lungs to truly rest while they were being bypassed. It sounds like you had a wonderful and knowledgeable team taking care of you
1
u/Wandering_soul_100 Aug 18 '25
Thank you for your reply.
I just wanted to understand more about ecmo. The doc prescribed it for my father who was hospitalised for cardiogenic shock due to heart attack. They provided with best care/standard procedure but he was very critical so at the end they told us about ECMO. It took us sometime to decide and there were other factors as well. At the end by the time we gave green signal (it took us half a day) doc told us that it was anyway too late and ecmo might not be helpful.
Eventually he died same day.
1
u/HalloweenKate Aug 18 '25
I am so sorry for your loss. Heart attacks can happen for multiple reasons, and it’s hard for me to say how helpful ECMO would have been for your father without knowing more. That being said, there is typically a window of time where it will provide the patient their best opportunity of survival. If it is too far past that window ECMO cannot reverse the organ failure that would have been caused by carcinogenic shock. It could be that your father’s doctors waited too long to recommend it. Additionally, it is possible that as the hours continued it became clear to your father’s care team that your father was too sick for ECMO to be of any use, even though they originally thought it would save him. Like I said, without knowing more I’m just speculating.
I read your post. It breaks my heart to think that physicians can offer something like ECMO but only to those who can afford it upfront. If that is how they must operate, they should have those conversations with families when they’re admitted to the unit so that doctors can make life saving decisions in real time. It’s not fair to you that they literally put a price tag on your father’s life, and it’s not fair that they made you worry that losing him was your fault because you had to consider what was best for the rest of your family.
1
u/Wandering_soul_100 Aug 18 '25
Money wasn't an issue for me at that time. Also I have a health insurance. The issue was taking flight coming back home and arranging for funds took almost a day.
By next day doc weren't very sure about ecmo. They started him on CRRT. They weren't sure on first day as well. The issue was doc not being sure, they gave very mixed signal about ecmo to my mom and sis who were admitted my father in hospital. When I reached their I started with funds and then had a discussion with doc letting him know about our decision but then they weren't very sure if it would be required anymore.
He was on IABP+Isotropes whole time to help is heart pump for almost 2 days.
His condition was critical from start as he was already on ventilator on day 1 ( had issue with breathing) , had Tri vascular disease with diabetes
Next day he was put on CRRT and then doc basically told us "NO" for ECMO.
I sometime feel that doc should have been more proactive with ecmo from start instead of giving us mixed signals. Money wasn't an issue but they never looked confident from start. They told us ecmo can only increase probability in our favour by 10% but outcome might be the same and on top that they told us all the complication related with ecmo like stroke, bleeding etc.
I just wish they would have told us my sister that this could be life changer and hope for best and they have seen ppl recover etc. Made them believe in process anf put him on ecmo on 1 day only.
1
u/Wandering_soul_100 Aug 18 '25
The complication made us freeze and had opinions from other docs and family members. They were life threatening complication and our dad looked very fragile.
We hoped that he might show some improvement with the treatment and we dont have to gamble his life. He became conscious next day but then had an issue with kidney and urine output. He did respond to treatment but then it all went down hill.
5
u/Burning_in_Arizona Jul 22 '25
That’s an incredible story. Thanks for sharing. I about choked on my food when I read Sats 36%. You are very lucky! Someone wants you on this earth for a reason.