Thank you for the lovely welcome back, the potted version of what happened was as follows:
My SATS began to drop and I felt unwell, couldn't maintain decent numbers off the ventilator so contacted HDU and the outreach Respiritory team. That's the last thing I remember.
I was taken to hospital and found to have pneumonia and the UTI that I've had since April (caused by a superbug) took hold again. My periods of central respiratory obstruction (caused by my brain being unable to connect effectively with the muscles I use for breathing) became longer and more frequent.
A decision was taken to either do a tracheotomy or put me into an induced coma, my family know how I feel about a tracheotomy because it's unlikely I would ever be able to go back to non invasive ventilation so I was put into an induced coma.
The UTI is almost totally antibiotic resistant, the pneumonia had a combination of causes and the fluid on my lungs was increasing, when the fluid was drained from my lungs there was quite a bit of food debris which won't have helped. I don't have an automatic swallow reflex so I do inhale food easily.
Note to self: need to chew more and be more careful when swallowing.
It took a couple of days to get the right combination of antibiotics and antiviral medication and I think it was four or five days before I started to respond. I'm still not sure of the timeline, but was kept in a coma until the infections were under control.
When the sedation was reduced I was too weak to make very much Respiritory effort so I was left attached to the ventilator with it being reduced for short periods when I was awake. It's a slow process and that's why I was in for so long.
Unfortunately my lungs are now so weak that I will need to have full time care from now on, I can just about transfer from bed to wheelchair
On a positive note I did lose lots of weight and came out of hospital with a bmi in the normal range for me. I don't have a brilliant appetite but I'm still eating hflc.
That's it, Lola was brought in to see me a few times as I improved and could go to the relatives room, she's lovely and I went for a walk with her yesterday in my electric wheelchair.
I feel weak, battered and bruised and a little bit more in touch with my own mortality, I was really upset and hurt when I realised that someone reported me and my account was suspended, if it was someone on the thread please pm me so that I can understand why.
I came back because I've had fantastic support here and although I communicate on other forums here I'm with people who aren't disabled or living with respiratory failure, it's been really good for me and I love you guys lots.
Namaste Bitches 💕