Lung damage, ECMO, time taken to recover.

[shivnajain]

Hi, my uncle was diagnosed with pnemonia and a 90% lung damage on 18Dec. 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. Also there have been 2 instances of bleeding from urine and throat in last 35 days whixh may be a side effect of ECMO. His lungs still have not gone into fibrosis, but the have not healed also. Anyone has stories similar and how they recovered would be helpful.

Lung transplant is an option, but something we would want to avoid, but stories would help

[Sepsur]

I don’t know what timescale is a normal expectation for lungs to recover - to me ( I’m no medic) your uncle sounds like he is in early stages of recover. I hope he improves soon.

[BigH63]

Hi Shivnajain

I’m sorry to hear this.

All I can say is I had bilateral pneumonia and collapsed lung sepsis etc, I’m now a year on from that time in ICU, my lungs are not fully recovered and not sure they ever will. I have fibrosis and this is stopping my from getting the full benefit from the carbon dioxide/ oxygen exchange process but I’m hopeful with continued exercise and healthy life style I might get better.

I’m sure others have more info on the affects of ECMO of which I couldn’t have as I was to ill to travel for it.

Good luck I hope things start making a turn soon.

[FamilyHistorian]

all I can say is that as well as every thing else I had double pneumonia and sepsis. It took me near 2 months to come round. From what I understand he was lucky to be offered ecmo. It needs to be available and if not in the hospital that you are in well enough to travel - a bit of a contradiction. I now have pulmonary fibrosis and sleep apnoea.

It’s good that he is sitting up I used to be craned out of bed into a chair - bloody uncomfortable but nevessary

[Qusie]

hello, I had bacterial pneumonia and was in icu, induced coma and on ECMO for around 2.5 months. My lungs were not improving and at one point they realized I had more then 1 type of pneumonia…started me on another strong I V antibiotic and slowly showed improvement.

[Copse77]

hello o did reply to your last post. I sent you this link. The first story you will see if you click on the link is our family story. We wrote it to provide hope to other families. If you read this you will see my brother had similar issues to your Uncle. It takes quite some time for lungs to recover and I also replied to you about bleeding being a side effect of ECMO. Please do have a look at this link as you will see much more information that may help your family.

healthunlocked.com/icusteps...

Best wishes for your Uncles recovery

[shivnajain in reply to Copse77]

Hey, Thankyou, the fhings is my uncle has been on ECMO for 35 days now and his condition has neither omproved not gone worse. So wanted to get cases where people have stayed on ECMO for longer and revovered, or move to a transplant stage.

[Copse77]

ecmofamilysupport.com/ecmo-...

[trotter123]

Do not give up hope. Nin years ago, I received ECMO treatment for pneumonia. Your uncles condition sounds very familiar. Recovery was very slow and often it was a case of one step forward and one back. Bleeds are common with ECMO (I believe because the blood has to be thinned). We are all different, but my recovery was long and slow (baby steps), but eventually I got back to a near normal life. I even got back to running each day. I have run (okay very slowly) two full marathons and am now in training for an ultra-marathon. Such stories are not uncommon for EXMO patients. Just keep the faith and be patience.

[shivnajain in reply to trotter123]

Thankyou Trotter, how long were you on ECMO, the reason I am asking is My uncle has been on for close to 40 days and has not seen any improvement in lungs, when did your lungs start improving?

[trotter123 in reply to shivnajain]

Shivajain

I was on full ECMO for, I think, about three weeks (which is nowhere near the record time). However, whilst my heart was strong, my lungs were still not oxygenating my blood to a satisfactory level, so I spent additional time (I do not know how long - probably a week or two - on a machine referred to as the 'A Machine' or 'Little ECMO' (I do not know its official title) which supported this function.

Shivnjain, do not despair. We are all different. I was slower to respond than many, but many were much slower than me. The important thing is that your uncle gets there in the end. Survival rates for ECMO patients are much better now than they were in my day. I am sure your uncle is in excellent, skilled and caring hands.

One piece of advice I would offer you, fellow family members and friends is always to be positive and confident when you visit your uncle. I had many, sometimes weird and frightening, dreams whilst undergoing ECMO. This seems very common. I suspect the catalyst for these dreams was coming from comments of others that I was picking up on and twisting. So, dwell on nice things and send him nice dreams.

If there is anything else that you think I can help upon please do not hesitate to ask. Your uncle's eventual rehabilitation is likely to be a long job. I seem to have handled mine better than most and I would be happy to share my experiences with you if you wish.

My good wishes to you, your uncle and family.