Confused....

So, let me tell you a story. Hopefully writing this down will help me process this in my head.... 


Last week my asthma was really playing up. Monday I went to work and wasn't too great, so no one was surprised when I phoned in sick on Tuesday, then Wednesday, and then Thursday. Thursday night I slept really well and woke up feeling great on Friday, so off to work I went. As the day went on I felt a little sicky, and gradually started to feel wheezy. I went and sat in a quiet room with my inhaler, quickly I realised that it would be a good idea to get across to A&E. As I'm sat there thinking who I should ask to drive me around to the other side of the hospital, I realised that actually I was deteriorating pretty quickly and I made the decision to ask someone to call an ambulance for me. Within the 10 minutes (at most, to me it felt like ages) it took for the ambulance to turn up, I had seriously deteriorated. They whipped me around to A&E, where on arrival, I had oxygen saturations of 44%. This was with oxygen, nebs, adrenaline and I was being bagged. I don't remember any of this, I remember my sats getting down to 62%, realising I was in trouble and deciding it was probably best if I stopped looking at the sats monitor.


Thankfully I picked up relatively quickly and didn't need to be intubated or go to ITU. I went to HDU, then moved to the respiratory ward, then home today. 


The consultant I saw in A&E told me how lucky I was. The paramedics who took me to A&E came and saw me when they brought another patient in and told me that they couldn't believe that I was ok after what happened. The professor I saw numerous times in HDU kept telling me, and the junior drs he was teaching, that sats of 44% is as near fatal as you can get without actually being fatal. The respiratory consultant told me that I'd been very lucky, and 5 more minutes without medical help would have most likely led to a very different outcome. I heard all this, I understood what they were saying. I guess because it's not the first time this type of thing has happened, I didn't dwell on it too much. 
It was decided I could only go home with an EpiPen, I briefly spoke to my respiratory nurse specialist about it this morning. It was fine, I was fine. I didn't get a chance to see my respiratory consultant today, there are lots of different respiratory consultants so if I'm only in hospital for a short while, it's not uncommon for me to not see him. However, even if I don't see him, he ultimately decides my treatment. He agreed to me having an EpiPen, so I asked my respiratory nurse to ask him whether he'd changed his opinion on me having a home neb. I mean, giving me adrenaline to self administer when he won't even let me have a neb at home - just seems a little backwards to me, surely nebs come before adrenaline?!


Whilst waiting for my EpiPen to come from pharmacy, I started reflecting upon what happened. I realised that for the first time ever, I was actually concerned about going home. I live alone, in a little village. Depending on where my ambulance has to come from, it can take 10 mins or 40 mins for an ambulance to get to me. Then it takes 30 mins to get to hospital. I got so poorly and nearly died, and I was only across the road from the hospital and ambulance station.


The nurse came and gave me my EpiPen, I asked whether anyone had the chance to speak to my consultant about the home neb, and she went to find out. The simple answer was no. It was okay, I expected him to say no but I wanted to ask. Then I realised that I was going home with only an EpiPen to 'save' me if things go wrong when I'm home. I collected all my belongings to go home, when the lovely nurse came back to me and said she'd just read my admission notes, and that she hadn't realised how poorly I'd been just a few days ago. This was enough to make me burst into tears - I think I threw her a little as I'm very much normally calm, collected, in control Dawn. I then told her how concerned I was about going home, and I knew I was being stupid, but for some reason I just can't shake the fear that I'm going to die at home because I can't get help in time. She left me for a few minutes, then came back and told me the SHO would come and have a chat to me. I hadn't even met the SHO, from watching him with other patients, he seemed lovely but I had no intention of making myself feel/look even more pathetic than I felt in front of someone I've never met before. So I said I'd be fine once I got home and went. I walked off the ward holding back the tears, I got to my car and pretty much cried for the whole 40 minute drive home. I got home, unpacked my bag, had a shower, cuddled and fed Tommy baby, still crying. I don't know what is the matter with me. I know nothing has changed since this time last week, I'm not at any greater risk of dying than I have been previously. I've been that poorly before, actually I've been in worse states than that before, but for some reason, this admission has really affected me. 


I feel let down by my respiratory team, which is completely unjustified as I didn't tell them how I was feeling. I didn't even see my consultant, and I didn't tell my respiratory nurse my concerns. I want to phone my respiratory nurse but for what? What can she say or do?? I have no one to talk to about things like this, I gave up trying to talk to my family when they used to say helpful things like 'we're all going to die one day'. Of course I have friends, but there is no way to explain that horrific feeling of not being able to breathe, feeling yourself getting worse, and knowing that death is a real possibility.


So that is that. I'm home, I keep bursting in tears and have this horrible feeling on uneasiness. I don't know what to do, who to turn to, whether I should even do anything or whether I just need to 'man up' and get on with it.