Any ECMO survivors here? : Hi to all reading, My... - ICUsteps

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Any ECMO survivors here?

abibi86 profile image
15 Replies

Hi to all reading,

My bro has been on the ECMO for a few days now, he was diagnosed with an autoimmune disease causing a harsh form of pneumonia (ILD). His lungs are inflammed as a result he was intubated but that wasnt working well for him so now he is on ECMO, doctors have told us how risky it is to be on ecmo. I pray his lungs start healing soon.

Anyway, i just want to know if there are any ecmo survivors here? please share your story i will be grateful. Anyone know anything about Interstitial Lung Diseases (ILD's)

Thank you,

A

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abibi86
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15 Replies
Justhere2help profile image
Justhere2help

My loved one was just on the Ecmo machine for heart and lungs (ECMO VA) due to influenza b ,pneumonia, and ARDS. she was on the machine for about 13 days because her heart was working as low as %10 due to the flu reaching her heart and lungs. Slowly but surely everyday her heart got stronger and so did her lungs. Her heart made a full recovery = ) and they were able to take her of the ECMO machine. Her lungs are now healing as she's on the ventilator and getting better everyday almost fully healed! The ECMO machine does all the work for your loved one so the body can heal she was on the ECMO from about February 17 to March 1 so 13 days. It is hard to see your loved one on ECMO but the goal is to let the ECMO do the hard work for your loved one so their body can heal and I've seen it with my own eyes = ). I wish you and your brother all the best prayers up from this side for you guys faith,prayer,positivity, and being strong for your loved one is always a huge,huge,huge plus!! I hope this helped = )

abibi86 profile image
abibi86 in reply to Justhere2help

Thank you so so much for the reply i really appreciate it. Thats just it isnt it. Slowly but Surely if God wills it.

My bros has ECMO VV, his lungs are flat they are saying. The drugs for the inflammation has not taken any effect yet. Making prayer that soon they will. The true test here is the time/patience. Its been

Thank you again and i hope your loved one is home safe and sound very very soon!

Peace and Love xx

JoECMOrules profile image
JoECMOrules

Hi I’m sorry to hear about your brother and pray he can battle back to health. I was on ECMO at Guys Hospital in March 2016. I had swine flu with ARDS, pnuemonia,sepsis and blood clots. I was on ECMO for 7 days.

abibi86 profile image
abibi86 in reply to JoECMOrules

Hey Thanks for the reply, thanks for your kind words, means alot. You made it! i hop eyou are in good health now. My bro has been on ecmo from Saturday so its been 5 days. but it doesnt sound like he will be out of it anytime soon.

please keep hjm in your prayers.

Thank you xx

JoECMOrules profile image
JoECMOrules in reply to abibi86

My health continued to slowly improve with some permanent issues due to my illness but ECMO saved my life . Everybody responds differently and at different rates , also different conditions could take longer but don’t give up hope . One thing I would say is talk to him, play music he likes , laugh and be normal as possible . I could hear and see my loved ones and even tried to write on a board to them . It was , and still is very confusing and surreal . I will keep your brother in my prayers .

I was on ECMO at Leicester Glenfield back in late 2009. I was one of the early Swine Flu victims that progressed to pnuemonia, then ARDS. I had to be removed from ECMO during my third week due to excessive blood loss which is always a risk with the treatment.

I think ILD is an umbrella term for a variety of lung conditions affecting the lung tissues. I have specifically been left with Pulmonary Fibrosis which has restricted my life ever since but at least I'm here to tell the tale eight years later.

I wish your brother well and hope he starts to recover soon.

TheGingerDancer profile image
TheGingerDancer in reply to

Just wanted to say hi to a fellow Glenfield ECMO survivor. I was there the same year.... but later on in November. We are so lucky to have made it out alive. I hope you're doing well and living life to the full 10 years on. Laura x

Eve2007 profile image
Eve2007

I’m sorry to hear that your brother is going through this. My advice is just be positive, don’t give up I’ve heard lots and lots of positive stories about ECMO. Around November my sister was on ECMO in Good Sumeretan hospital in LA. Her case was much complicated, but one thing I learned about the whole experience that u need to stay positive and make sure that your brother does not give up. He will be in my prayers.

abibi86 profile image
abibi86

Sadly he didnt make it...thank you all for your prayers. x

Chaosweb profile image
Chaosweb in reply to abibi86

Im sorry to hear that.

Chaosweb profile image
Chaosweb

My daughter is also in icu right now suffering from ards, pneumonia, tb, lupus, sepsis and her heart rate is so high.

abibi86 profile image
abibi86 in reply to Chaosweb

whats the latest here? thinking of your daughter x

Chaosweb77 profile image
Chaosweb77 in reply to abibi86

sadly. she didnt made it. our world crumbled. :( until now i still cant work. im losing all hope in life.

abibi86 profile image
abibi86 in reply to Chaosweb77

im really sorry to hear this. what can we do but carry on with LIFE. prayers are with you x

Ecmopaul profile image
Ecmopaul

Hi there I was on ecmo for just over 3 weeks in early Jan 2018 I had sepsis pneumonia and flu b I'm one of the lucky ones that pulled through and it's only because of fantastic treatment I was given at Leicester I still have ongoing issues but I managed to walk out of ITU a day after my trackeosemy was removed I feel I was given a second chance in life I'm sorry to hear that your brother did not pull through but for any one who is on ecmo there is hope

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