Is ECMO too soon??

[Claudiad]

Hi all I'm finding such comfort in reading your posts..

My brother-in-law is 6 days in ICU (after 9 days on CPAP) My sis is taking the calls from the hospital (so hard to do) and the docs were today asking her questions relating to his suitability to fit the criteria of going to ECMO (which is is in a hospital 30 miles away).

Still getting to grips with everything but this made me feel scared of course as it is the last cause if action is it not? And does it not seem too soon to go down this route I thought you could be on a ventilator for much longer than this..

Any knowledge would be great.

also is there any zooms, meditations or support groups that anyone knows of for people in this horrible waiting situation?

Thanks so much for being here all! ❤️

[Claudiad]

Sorry forgot to add. With covid

[judyeli21]

There is group on Facebook called Survivor Corp! This amazing group I know you will find the information you need. My brother is now on 60 day ECMO due to covid. ECMO is a roller coaster of experience. ECMO has saved many lives. I pray for your family during this tough time. May God give your strength.

[Mccarthy0702]

Read MarthaKos posts they might be of some help to you . Truly a miracle x

[Grant_za]

Hi Claudiad. I'm a perfusionist - a perfusionist is part of the support team required for a patient on ECMO. Typically, we manage the "heart-lung machine" during invasive cardiac procedures where a patient needs to be on by-pass for part of the surgery. The principles in terms of equipment are very similar, but ECMO is more advanced. ECMO is not necessarily "the last course of action" - it sometimes is, but also often a "preemptive" intervention. ECMO is incredibly expensive, and as such, is used judicially. ECMO is also a very finite and limited resource. "Candidate" patients are carefully selected on an outcome basis - which appears to be the case with your brother-in-law. Were the prognosis very poor, he would not be considered as a candidate. ECMO provides lung protection and rest. Timely initiation will often result in a favorable outcome.Having said all the above, should your brother-in-law not be selected, do not despair either - there may be another patient who's prognosis may also be good, but their needs may be more critical at the time.

I'm obviously trying to give very general input here related to ECMO, each patient's condition and needs will vary. I suggest your family asks for an appointment with your brother-in-law's critical care physician - an early morning appointment before he starts rounds. Discuss any concerns, and try understand the course of action the medical team envisages taking. A sit down discussion is a whole lot better than side discussions in an ICU environment, where the doctor's eyes and ears have to be everywhere at the same time. Hope this helps a little.

[Sepsur]

As a last resort it was always held up that I would rush to Wythenshawe for ECMO, that fateful day came & W declined to take me because they felt I wouldn’t survive the journey. So in the weirdest way, take comfort that your brother has been placed on ECMO - they must believe it will work for him.

We have a relatives drop-in on zoom Tuesday 18.50GM, a general drop-in tonight Thursday with 2 x ICU consultants as guest speakers.

We also do zoom yoga twice a week & 2 x exercise groups. icustepschester.org

[Cazthomp in reply to Sepsur]

These session are such a brilliant idea do you have to be in the boroughs hospital to join my mum is in ICU with Covid in Bolton hospital

[Sepsur in reply to Cazthomp]

You would be welcome, after all we are practically neighbours. 😊

[Cazthomp in reply to Sepsur]

Fab I’ve sent a message on the websites on the contact us bit thanks so much

[Sepsur in reply to Cazthomp]

Well, I’ll look forward to meeting you along the way 😊

[Claudiad]

Thank you so much to everyone above.. your comments mean the world and give such hope. And wow, I feel so much more knowledgeable about ECMO now, thank you Grant_za. It's so hard not being there and of course even if you are there talking to rushing doctors is difficult when you are trying to understand it all and bless them, they haven't got time to school you on it.

Hard for everyone.

The generosity of you all who provide knowledge and support on this forum is invaluable.

I will definitely join in those zooms, Sepsis.. thank you.. I guess I will find it on the ICUchester link you provided?

❤️❤️❤️

[Sepsur in reply to Claudiad]

If you want access each session has a different entry code. Email us & we will supply codes for sessions you’d like to attend.

[MarthaKos]

Hi Claudia, my partner spent 5 horrific days on the CPAP before he was put on a ventilator. He was on the vent for less than a day when they decided to put him on ECMO. I wouldn’t say going is the worse thing that can happen, it actually saved his life. From what Tony has described being on the mask with covid awake, laid on your front not being able to drink water or eat and in so much unreal pain, so if your relative needs it, I pray he gets it!

Let us know how he gets on, and so join the relatives group every Tuesday at 6.50 over zoom, I have been on it since early days in Tony’s sickness and it has been my lifeline literally! take care of yourself and your sister x

[Claudiad]

Thanks so much all.. my brother-in-law didn't qualify for the EMCO they said because he was on CPAP before he went on the ventilator. So I guess that is that.They are proning him today because his oxygen is better that way. ( -forgive my lack of knowledge or terminology! I'm only hearing the doctor's info second-hand from my sister and am not familiar with all the processes yet ..she can't really go too much into the medical side of it at the moment as it's a bit much. Sometimes asking google is just too triggering. )

I will definitely come on that Zoom later. My sister said it would be better for me to scope it out first and then come on the one next week, all being well.

Bless her she's getting all kinds of silly comments like people saying "oh is he better yet..? "

So hard for families.. thanks all.

[Jbujanda82 in reply to Claudiad]

My dad spent a little over 3 weeks on a ventilator, was also proned, paralytics were given to him and had kidney failure. It is a very scary situation! I’m glad you found this site it really does provide a little comfort knowing more people are going thru some of the same stuff. I know how your sister feels as far as getting questions from people, I know they mean well but after a while it gets overwhelming especially if our loved one isn’t doing too well that particular day.

[FamilyHistorian]

Hi Claudia

Thanks for dropping in tonight. It was a slightly different meeting tonight. You might find a different sort of support from the relatives meeting on a tuesday. Simon

[Claudiad in reply to FamilyHistorian]

Hey Simon, I absolutely loved it. I'm so glad you were all still online after my phone call..☺️It really lifted me and I fedback to my sis the hopeful perspectives that you all gave me on these situations at these point.

She's really excited about coming on Tuesday and poss even yoga on Sat!! ☺️☺️☺️

[Sepsur in reply to Claudiad]

Brilliant

[Catdancer01]

Hi, I was admitted to Ealing A&E beginning of 2019 with SARF ( severe acute respiratory failure) from flu & pneumonia, lungs failing. That first night the ECMO team came to pick me up & take me to the Royal Brompton. I was on ECMO for 3 weeks, 3 more weeks ICU after, then 2 weeks normal ward. ECMO saved my life, it gave my body & lungs time to recover. I had no underlying health problems & was a fit & healthy ballet teacher before I got ill. It took me 18 months to fully recover physically & mentally & now I feel ‘normal’ again.

ECMO is there for patients who need it when ventilator is not enough.

[Ferham]

How are your lungs now ? Do you have any scarring at all ?