I’m new here: Mum on ventilator with Influenza and unidentified strain of pneumonia.. seeking hope

[Yasmin1990]

Hi all. Mum has secondary breast cancer which she has been managing however recently went on holiday and upon return had flu symptoms. Within a week she was in the ICU on a ventilator and 100% support. She’s currently on day 10 on the ventilator and she had been improving. She got down to 50% support and there was talk of a tracheotomy. However she’s now developed a high fever and levels aren’t improving anymore. Theyre saying there is still infection which the antibiotics haven’t treated but they still don’t know exactly what it is.

All the strains of bacterial pneumonia they have so far tested for have been negative. They’re now putting her on fungal antibiotics whilst we wait to see if they help. I’m terrified and so upset that after the progress we are now moving backwards. Is there anyone with similar experiences that could provide a bit of hope? Really need some right now

[Sepsur]

Yes. For 8 weeks (when I woke up) my family were told I was improving then getting worse, then improving, then getting worse. By week 6, my wife said she had given up hope - since the last resort was no longer an option I.e. ECMO - reason being - I would not survive ambulance journey from one ICU to other. I had sepsis becoming septic shock, complete respiratory failure, cardiovascular failure & renal failure, flu, double pneumonia ( or legionnaires- they were unsure) I then was diagnosed with severe ARDS. Then they thought I had AML, in fact I had a different leukaemia. I picked up VRE, MSSA, CMV & glandular fever. Suffered ICUAW, delirium & cognitive dysfunction. I’m here having cooked a barbecue for my family, my granddaughter on my knee while my daughter forces me to watch crap KPop videos. Life is back to normal. Just off to walk dogs on this gorgeous evening.

[Yasmin1990 in reply to Sepsur]

Hi Sepsur, thank you so much for taking the time to reply. I have read your story and it really is quite amazing. I hope that days like yours today will be ours in the not too distant future. This experience really is unlike anything else. One minute your clinging to a small bit of hope and the next it’s dashed. You are however proof that even when it seems like all hope is lost, this is not always the case.

[Yasmin1990 in reply to Sepsur]

Hi Sepsur, just wondering if you could offer some advice. Mum is on day 19 on the ventilator. Her condition has been the same for the last week, 50% oxygen required and 12 PEEP with temperature still spiking.

Yesterday one of the ICU consultants tried to scare us into withdrawing support. He said she could be weeks more like this then recovery could take 6 months in hospital? At which point without being able to treat her cancer this could get worse and we may wake her up to die of that. I don’t feel ready to give up on her yet. Everything else I’d functioning well, has hasn’t had any other organ failure etc.

How long was your time in hospital after the point they were able to do the Trachy?

Thank you

[Sepsur in reply to Yasmin1990]

I had a trachy somewhere between week 7& 8 - it took me 11 days to come to but I woke up consciously to having a trachy. I spent another 4-5 wks in ICU and another 4 wks on various wards.

When your Mum wakes - she will be exhausted - encourage her to do all the physiotherapy she can manage(and she will need encouragement) - best wishes moving forward.

[tessauk1]

Yes. I went into 2 grade 3 Comas with Sepsis, pneumonia, Mrsa and Organ failure. I was given a 1-2% survival rate. Now 10 months later, apart from having short term memory loss, I’m doing better than ever.

[Yasmin1990 in reply to tessauk1]

Thank you for the reply Tessa. Do you know how long you were in a coma and ventilated for? Mums on day 12 today, her condition has stayed much the same for the last few days since she seems to be fighting another infection.

Really hoping for some progress soon.

[tessauk1 in reply to Yasmin1990]

I was in the 1st Coma for about a week, came off the vent for 3 days then into the 2nd Coma for 3 weeks or so. I hope your Mum recovers soon.

[lgt525]

I was in a medically induced coma with an unidentified strain of bacterial pneumonia. I went in at Easter and was in the coma for 12 days. I was on a ventilator with 100% support and it would get a little better then get worse. There was talk of a tracheotomy because the oxygen simply was not getting through my lungs. They gave me many different types of antibiotics in large doses and then one of them worked and they were able to get me off the ventilator and oxygen and I went home. I am now back at work typing this to you so there is hope! Since pneumonia is a secondary infection they often do not find the specific strain and just throw many antibiotics at it. You are in my thoughts and I have hope for the recovery of your Mom.

[Yasmin1990 in reply to lgt525]

Thanks so much for your kind message of hope lgt525. Mums on day 12 today, this new infection seems to be holding up progress. Trying to stay hopeful that we will move forward soon.