Experiences with

Eczmol

Day 39 of my partner being in hospital, and day 16 of super urgent list with not a single offer. 💔 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

My 25 year old partner is currently in the ICU 2.5hrs away from home for the last 35 days. He has cardiomyopathy, severe heart failure and is awaiting a transplant. 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

Hello everybody, I'm new here however wanted to post my journey and express how reading other survivors stories made me realise I am not alone in this. I was admitted to ICU on July 9th 2023 in the UK with Respiratory Failure as an effect of Covid and Pneumonia. I was immediately placed in an induced

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. Its been 2 weeks now

Hi all.I was in icu hospital for 3 months this time 4 years ago with acute respiratory failure and pneumonia. 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,

Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims

A BIG Hi to you all. I’d like to introduce myself. My nick name is Big H and my journey started in 2021 with a covid pneumonia. I was in a pub when we were allowed to go out, it’s the only place I had attended before contracting Covid Pneumonia. I just remember it was like having the worse flu and

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. Life shit But.my.concern.is my severe

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. I have now also been diagnosed

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?

Hello, this might seem a strange one, given all the other major after-effects of intensive care, but I got a bit of a shock yesterday to be told I have gum disease. Given my regular daily brushing it was a bit of a shock When I thought about it I realised I did not brush my teeth for nearly three

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

Can anyone shed any light on fatigue? 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

It’s day 14 that my boyfriend had been in ICU and day 6 on ECMO r/t Covid. I hate seeing him so uncomfortable. I can’t take his suffering away. I have been there everyday and I feel like I’m failing in life. His survival rate is 40-50% . He is supposed to get a Trach Friday. I hope this helps with his

Does anyone else feel isolated after being seriously I'll on a ventilator, life support machine and a trachy? 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

Friday 13th - what a lucky day forMy husband . 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 . IPF had finally got the better of him and ironically he was taken in to A & E just as he was about to sign the

My would-have-been husband got severe covid in mid Feb. Damage was extensive, so they put him under medically induced coma. End of July will be 4 months in that state. He's on ECMO, ventilator and dialysis. I don't have information on exact kind of life support. He's never awakened but he can hear but

Do you know anyone, who doctors had left all hopes of surviving but they did? Does being young (29) and extra fit help? He had a severe case of covid and what seems like pneumonia and the infection has reached all major systems with DNR set for 31st August. Sorry, I have no information except he'd been

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. They have been good in helping me settle back at work but I am feeling like a fraud when I say I'm still getting tired easily

My significant other is coming to the point where he’s been on VV ECMO for too long and it is starting to cause complications. There is a chance that his heart will stop so the doctor would like someone to be at bedside with him. Once ECMO is removed, the hospital will not put him on it again. Prior