So my last post was written when I was in hospital and it took me forever to write. I just had so little concentration and left it fairly abruptly saying I was going to ITU.
Well I spent 4 days in ITU. The first 24 hours were really hard. I remember just having such a hard time breathing that i really didnt care what was happening. I was given so much support from the nurses but there is only so much they can do to reassure you that everything will be ok. We kept trying to lower my oxygen and then I would drop and we wold need to turn it back up again. My main memory of ITU was the struggle they all had with getting access to give me medication and get my blood. Even though a lot of the time it was excruciating being stabbed and have needles trying to find veins I really didnt care because even the effort of caring was too much. I really have never been so scared as I was this time, it just didnt seem to end and I felt like I was getting too tired to fight it but eventually I finally managed to turn the corner and started to get better and became more stable but with that came the pain in my chest but that was easy to deal with compared to what had been.
I really cannot thank the nurses and Drs in Intensive care enough for all the care they gave me and how much they supported me and just cared and put me at ease or at as much ease as possible. I really would not have got through it without them as it was just so terrifying.
Leaving ITU to go to the ward I was really relieved as morally once Im out of ITU its 3 or 4 days and I bounce back and ready to go home. I was so wrong this time. It took me three weeks to get back to near baseline where the Dr’s were happy to discharge me and Im still not back to baseline.
So what happened to stop me getting better in 3 weeks. I don’t know. I seemed to just have such a rollercoaster, I would have these weird allergic reactions- I actually reacted one day to my nebuliser mask even though I had been using it for the whole of the admission so far. It was very odd but with each reaction I was setting my chest back further. I also had these weird times where my chest would get really bad for no reason and then I would break out in hives and look like I had red man syndrome (but i didnt and I wasn’t on Vanc). It happened once infront of the Dr and the Dr saw the whole thing. All of this was happening when I was in a side room but they wanted me out the side room and into a bedded bay so they could see me as my bed space was right by the nurses station. This didnt go well and something in the room set my chest off within 3 hours of being in the room and 12 back to back nebs, IV magnesium, IV hydrocortisone and who knows what else and no improvement ITU were called back to review me and kept a close eye on me but thankfully the ward were happy to look after me and I could stay. This was sadly not the last visit from ITU as deodorant was sprayed in the room and that set things off too but thankfully the Drs decided I needed to go back into a side room where I could control what was going in and out so I wouldn’t be exposed to anything which could trigger me.
With lots of up and downs things slowly got better and stable enough to think about discharge and home.
Its left me with a lot of thinking and a lot of work to do to get myself back to where I need to be. I just can’t believe that from the start where I didnt think I was that unwell to being really the sickest I have been in a long time and then not getting back t baseline for discharge has had a huge impact on me.
I havnt really processed everything yet and will need to put it down in another post once I have sorted all my thoughts out and where I want to go from here with my treatment and my life in general. But right now I need to focus on getting myself back to a level where I can function and having a shower is not leaving me in a heap of exhaustion and breathless.