First week of home ivs completed, and was hoping for a nice positive "it's going great" blog post...not the case!
Nope I'm pissed off to say the least!!
So I went up to Lind ward (day ward at the Brompton) last Monday knowing I needed to either be admitted or start home ivs, typically there were no beds so home ivs were the only option-see I have royal ascot on the 18th June (Wednesday) so I knew I needed to be well as it's my first time going and I have spent a lot of money on an outfit so these stupid lungs of mine were no way going to stop me from enjoying this event!
Anyways my lung function was 19%, weight was good considering I hadn't really eaten much the past week it was 40kg my crp (infection levels) came back at 53 so slight infection but nothing alarming! I started aztronam and tobi ivs-and reluctantly started a small dose of steriods, I don't want this to become a new thing now everytime I have ivs, however I needed a quick fix/boost for race day approaching! Also didn't want a round face for ascot!-shallow but it is important to me!!
Anyways so that brings me to now, a week on and I should by now be feeling amazing or at least on the right track...
Nope, Im not functioning unless I start my day with two little anadin tablets, last few nights I've had to sleep with oxygen, I started getting feverish again, energy levels should be much better than they are, most of the energy I'm using at the moment is out of pure determination to not be sat at home, giving in and feeling sorry for myself..
However knowing I feel like this I was up at the hospital today, had to go on my own which I thought I could manage better than I actually did lol, turned up there and to start my day off I couldn't find a bloody parking space...then I found one I couldn't get my car in...then I found two more..happy days..or not as it turned out!!
I pulled into it, then this foreign couple pulled up next to me and looked at me like I was a piece of poo, clearly didn't think I was "disabled" I put my window down and asked what they wanted, to which they replied they wanted to get in space in front and told me to reverse back which I was already in the middle of doing, they stressed me out (which I'd like to point out I'm on steroids and it doesn't take much) anyway I can't really blame them for what happened next as I just wasn't paying attention and got myself all worked up but I reversed into the parked car behind!! FML anyways the car was fine and these annoying people got in the space Infront of me but completely blocked me in...I just wanted to curl up in a ball..and I still had a long old walk up to Lind ward yet!!
By time I got on to the ward I felt liked I'd walked about 10 miles stopped and had to sit down twice, coughed so much I was busting for the loo which was being cleaned, then door wouldn't lock- was turning into such a palava!!
Anyways so done lung function which was 21% was surprised it was up as didn't reflect how bad I felt, Sats were same as when starting ivs, weight had gone up to 41kg and that's prob just all on my face haha saw dr, told her how I felt, said after ascot if I still hadn't improved can I go on bed list to go in as I need the rest and want to be proper well not just mask the problem, she kinda poo pooed the idea, wanted to start me on oral anti biotics to help boost things but see how I get on in a few days before starting them. So that was it really, didn't have the energy to kick up a fuss and tbh lung function gone up and weight so to her things were going in right direction...went and had bloods done to check all my bits and pre tobi levels and went home....
Well few hours later I get a voicemail from dr to tell me my bloods had come back and my infection levels had gone up to 113 that's over double than when I first started!! And she had spoken to consultant so going on bed list! As stupid as it sounds I was glad they had gone up, I don't make a big deal about how I feel unless I'm not good, I don't wanna spend time in that place if it can be avoided! But at least I knew I wasn't over reacting and that explains why I was feeling so rubbish and not felt like id improved!!
So I'm going to enjoy ascot on Wednesday and then rest up lots get myself well again hopefully I don't have to wait too long for a bed, just want to be well now!
Plus there's a few things I need to see them about and actually see my consultant feel like I'm just another number up there at the moment completely off the radar!!
So that's me... Want to end this little post by paying my respect to a friend who sadly passed away the other week! We weren't mega close but we had are own little bond and use to have a little moan to each other, she was my Brompton Kalydeco buddy!! We both were the first ones at the Brompton who weren't on the trials to get Kalydeco!! I've always been very grateful to her parents too for pushing for the drug, without there help I wouldn't have got it as soon as I did, and who knows if I'd even still be hear to this day!?
Sadly Freya couldn't have a transplant because she grew a nasty bug called Mycobacterium, so Kalydeco really did an amazing job, It kept her going ALOT longer and pulled her through some nasty infection, sadly not this time though. My heart breaks to know shes gone and I can't just text her anymore to have a little chat, to see how's she's doing and how's her little blue pills treating her!! My thoughts go out to her lovely parents belinda and peter!
Rip Hun xxx