Well 21st December 2011
I ended up back in Costa Del St James, i had 3weeks of home iv's not improving so i had to admit defeat and go in, i didn't want to be ill over Christmas, so maybe if i went in for a few days i could be home for Christmas day or on home iv's shortly after, however things didn't go to plan :( 9weeks later i was just coming home!
My FVC was just 14% damn i was struggling, even making a cuppa was hard work, people came to visit, i was shattered after they'd been there an hour and wanted to sleep, things were slow at picking up Christmas came and went, My mum came to see me and it was a bonus i could watch all the Christmas films, i spoke to my niece on skype which cheered me up too, she said they would be bringing Christmas to me on boxing day.My sis's family were going to come Christmas day, but having other plans i didn't want to ruin them, plus hospital is no place for a 6year old for Christmas....
Boxing day my Sister and family came my niece chuffed to bits cos she'd brought Christmas to be, i had to make an effort, pull myself out of the covers and at least pretend to be enjoying myself, in agony with chest pain, on Tramadol and codeine and still in pain this wasn't easy i didn't quite feel all there, why couldn't i be my normal self for one day. We have a ward kitchen, so me and sister went to cook while Richard and Rebecca watched a film, gave us a bit of girlie time too, we had crackers and even had penguin races across my table, played lots of games something to take my mind of the pain, it was a bit later on i was struggling after them been there quite a few hours, asking for more pain killers and now Cyclizine (anti sickness) well that was me out for the night, but a brilliant day however rubbishy i was feeling
A few days passed they decided not to do my lung function as felt i wasn't up to it, makes me wonder what it really went down to, didn't pick up tried different cocktails of drugs etc still to no improvement, so i had to finally use my reserve transplant drugs, which meant i had to come off the list, then i started passing blood however i seemed to think it was just because I'd drunk a lot of ribena, unfortunately it wasn't, but after a few days that had soon settled, last thing i needed was my kidneys to have a hissy fit i was trying to get better to go home, why wasn't my body co-operating, patients came in went home n came back, when was my time to go home....
A week after being on reserve drugs my CRP started coming down, things were going in the right direction finally yay! now 3weeks on for transplant drugs they decided i could go home, yay at last :D but i had to go home on iv's this been the usual Aztreonam, as they thought it was important i didn't just stop, worrying i could catch an infection again and I'd be admitted again, thankfully the Aztreonam is keeping me steady, i have good days and bad, well saying good days, i know how i felt around Christmas so a lot of day's feel like good days in comparison.
I'm now managing around 2 weeks on iv's and maybe 3-5days off, just so i get a break, and live a bit of normality i feel this is important too instead of living life round treatments etc
Keep Smiling :D