Experiences with

ExtraCorporeal Membrane Oxygenation (ECMO)

💔 The ECMO is no longer enough to support he is having to get a biVAD fitted ASAP. Very distressing for us as his family to hear open heart surgery, but if it will make him less breathless and feel better it’s just what needs done.

He has been on ECMO for 13 days but LVAD being considered if he has not received an offer by the end of the week :( meaning he’ll be off the list temporarily getting that procedure done!! Had hoped we’d have at least received an offer by now - but not a single one has come through.

Hi my uncle had a low oxygen stroke on 18 Dec and diagnosed with pnemonia and put on a vent machine and Ecmo on 20th Dec. He still has low recovery on lungs but he has not been able to come out of sedation. He is getting aggressive and agitated as soon as the sedatives are reduced.

I was immediately placed in an induced coma which lasted 2 months as my organs were failing and I was transferred to an alternative hospital for ECMO treatment (Life Support). I was ventilated and remained that way until mid January 2024.

I was on ECMO for 25 days with 4 failed attempts to have it removed before I finally managed without it on the 5th try. I experienced all the common effects of this , learning to walk again, muscle weakness as well as fatigue , delirium, sleeplessness, etc, etc.

He was put on ventilator and ECMO on 20th, its been 35 days ans there has been no improvement in the lungs. he took about 20 days to come out of induced coma, doctors are now making him sit occasionally and hoping for some improvement, but nothing significant.

Ecmo 2016 ...ventilated every 6 months from then.even tho on.biologics and 40mg pred daily...Now 2023 on benra and 17.5mg pred with pheno over 200 ... Not.been.in.itu.since 2019 ...but crap day by day ...all energy in mornings then no energy etc from.approx 3pm.

ambulance, no added drugs or increases of current patient verbal or written approved med regime, no hospitals, no alpha and beta blockers including all of the antihypertensives, no CPR, no dextramethorpin/cold medicines, no ER, no Hospitals, no g-tube, no nursing homes, no cardio-pulmonary assistance, no ECMO

., I was also inline to have ECMO apparently it was discussed with I think St Thomas’s London but I was to ill to be transferred. Plus suspected brain damage.

We got told she is not going to make it but one miracle happened and team of specialist from other hospital came and took her to other hospital to connect to ECMO machine which managed to stabilize her condition.

Hi My daughter had ECMO at birth for meconium aspiration. . Developed seizures at the age of 15. Awaiting MRI head. I was told possible hypoxic injury from ECMO caused a scar , acting as focus of epilepsy. Anyone on same boat?

I have quite a basket of post-ICU/ECMO/covid/coma health issues, but the majority of them have been known to me since I left hospital, eg denuded lungs, heart, neurology issues, muscle waste, fatigue etc etc. However, a small bombshell has landed in my lap just recently.

When I was in a coma on ECMO for a month I do not know what happened, but I have a feeling keeping me alive was the priority. Has anyone else had experience of unhealthy teeth and gums after ICU?

Hi my husband spent 7 weeks in an induced coma,he had covid pneumonia which caused respatory failure and he was put on ECMO for a month he had kidney trouble needing dialysis he had to have a biopsy on his liver ... he is now medically fit after 4 months in hospital ... he is now in a physiotherapy hospital

We have been told Ecmo will likely be for 8 weeks to 4months. Is there anything someone could have done to help you during this time?

Two years now since I was in icu on a ventilator/ trachiotomy and on ECMO. I was sedated from 30/12/19 until 28/1/20. But in icu 18/12/19 to 9/2/20. Not covid related. But with acute respiratory failure./ pneumonia. I am still feeling weak and lethargic as well as tired all the time!

I was in an induced coma and put on ECMO in January 2020 for a month and previous to that ,on ventilator for week. Total of 7 weeks in icu and hospital for 3months. Then home 5 days before lockdown.

He was I believe quite close to death and docs were querying whether to put him on a machine to take over breathing, ECMO I think they call it .

. :,( Edit: He's on ECMO, dialysis and almost 4 month on ventilator. He can hear but not respond. They've tried weaning off but failed. Most of his family got covid so seems like he's been alone all by himself. :(

Can anyone recommend any links or pamphlets I can give my employer to help them understand how I may be recovering after being in icu and on a ventilator and ECMO gor 23 days.