Neglect to my blog

I want to appologise to how long I’ve been away.

The last you heard I was on my high flow nasal and in hospital…the short story is I was in for two months and after 6 weeks of high flow nasal and going in and out of intensive care. They then decided I was well enough to go ahead with my PEG operation. It was done awake, and to say it was painful would be an understatement. I thought that they would numb it at the least but I was totally awake whilst they put a tube down my throat, blew my stomach up, cut a hole through my stomach and put a tube into it… All awake and no numbing. It was so painful that I couldn’t even breathe…every single breath was agony so I didnt want to take big breaths which left me getting hypoxic even on oxygen. They tried giving me my NIV mask to help force me to breathe but was too painful so I didn’t want it on. In the end I had to go to intensive care to manage my pain and help with my breathing as I just was struggling to take any kind of normal breath without severe pain.

Was two days before it went from 10/10 pain to 7/10 pain…and then after a week they finally said I could go home.. after two months in hospital…most of that in my hospital bed not moving. You wouldn’t believe how fast I wanted to go home. Now with my new peg tube fitted.

Once home it took me a little bit longer to get my strength back and so I stayed downstairs for a bit. I was still using a Zimmer frame and not able to walk much. After a week or so I made it upstairs to my bed..oh it was nice ! Not to mention how much I missed my dogs.

My asthma kicked off a month later and I ended up back in hospital and then few weeks again after that.. I did however get put into a new clinic after they finally accepted with more blood gasses that I’m hypoxic.

This new clinic was going to be my new start.. multi disciplinary clinic. So speech and language, physio, lung functions, bloods, chest doctor. I thought great this is going to be when they finally start doing stuff…

This however was not what happened… I turned up to clinic and first was speech and language. They did a provocation test with a camera down my nose to see what was happening..my vocal cord dysfunction didn’t seem to be there but I did have signs of ILO as when I was coughing my vocal cords weren’t opening as quick as they should.

Next was my lung functions which showed no asthma at that time (presumably because I’d had my nebulisers that morning and I was on high dose steroids ) it wasn’t great results but not awful. Then next was the useless Dr… Well… what a f***ing 💩 he just basically put it down to the fact my weight and steroids are all my problem. Nothing else. Told me my lungs have been collapsed for well over a year and yet we are doing nothing to help that. I was meant to be having home ventilation arranging a CPAP machine to help expand my lungs again but that’s all gone to 💩 as when I left hospital all the notes disappeared. So they arranged another sleep study, did that in February and they now can’t find those results either. There’s notes from the first one to say my oxygen is dropping at night but nothings been reported on the second one.

During the clinic app with my chest doc I asked over and over what happens when I lose weight and I’m.still in and out of hospital lots.. he wouldn’t answer my question at all and kept avoiding it. That’s probably what annoyed me the most..I like to have a back up plan so I know if something isn’t successful I have a plan..

So for now it’s just me losing weight though being on nil by mouth and feeds only. It’s a little bit easier.

Determined to lose weight just to show him