I left hospital on the 17th after a 20 day admission, little longer than I hoped but after a week of being in I started feeling like I was getting worse, no energy, sleeping a lot, I thought I may have over done it in the first week but my infection markers jumped up to 108 and it reflected how I was feeling, so a little change up of ivs and they seemed to do the trick.
Also I managed to try meropenum iv again, a very small dose over a 30 minute infusion, but no reaction so very pleased with that, hopefully means in the future after a few more trials il be able to use that again!
I also tried a new machine that I might be able to get for home use, similar technique to the bird but not using oxygen, can't remember the name of the machine though.
So been out just over a week, had, I'd say maybe 4 really good days, but now starting to flake again although some days I'm better in afternoons and evenings, most days are just right offs, but still pushing through.
Today I had a little appointment at Harefield to see Dr Carby, I wanted to make sure that although I've left the Brompton that there was no change with anything and I've not seen him since being re-listed and I think he has definitely noticed the difference, more breathless using oxygen again and obviously wanting lungs more than ever! They have a meeting every Thursday and said I will be discussed tomorrow with the surgeons.
So here's hoping my next blog could be a blog to say I have beautiful sparkly new lungs!
Much love xxx