Still here..

To all my fellow bloggers, don't you want to scream with frustration when you spend a while writing a post and you have really gone into detail and written so much then pow the iPad crashes and and you go back on it and it's disappeared....yeah that just happened and yeah I do want to scream the ward down! ......ANYWAYS!! 

So I'm day 7(8 depending on what time I post this entry now) 

And usually at this point I've either packed my bags and ready to go, or left already buzzing full of energy and feeling on top of the world!! 

So that hasn't quite happened yet, things seems to be taking a little longer to get sorted. All the numbers are showing the right stuff, infection markers are right down in the 30s, my lung function has increased to 22% even though the drs aren't sasitified with that, they want it higher, but I'm not not feeling like I've had a weeks worth of ivs, today admitidly I have felt my best! I've been stuck on an aminophylline drip since Monday night and it's doing my head in now, I'm just stuck in bed 24/7 because what else can I actually do, I have the worse pump stand with wheels that seem to have a mind of there bloody own, even going to the toilet is a battle with this stupid thing! 

There refusing to take me off it unless I agree to steriods which is a big NO NO, I'm sick of relying on steriods just to get well, it's a false effect, they just replace one problem for about 3-4 other problems. I feel like a ticking time bomb on steriods like I'm just going to argue or snap all the time, they depress the hell out of me, my skin always feels tender and sore on them, I obviously get a very sexy round moon shape face, and I'm just not feeling that right now, I don't need steroids to get better there just a quick fix but once you come off them you get unwell again cause your body relys on it! So until these drs break I'm stuck on this drip, but were reviewing it tomorrow which could mean I get my own way, I'm fed up of peeing every 5 mins from all the fluids and having to have bloods every day just to check the levels!! Lol 

Anyway like I said I felt better today so managed to get off the drip for a few hours as I requested from the drs, for my sanity I needed to escape, mum and I went to the cinema down Fulham road and watched "the fault in our stars" such a good film and lots I can relate too, I read the book last week, would defo recommend!  It's got me thinking a lot but that's a post for another night, I'm in the middle of my ivs and I can feel myself getting sleepy now. 

Will update again to finish this post, bit of a pointless one but I've gone from having this all in my head what I want to write and feeling wide awake to my eyes literally barely staying open-the joys of drugs!! The originally post being lost didn't help!! Lol

Night all much love 

A&E, Ascot and back in the Brompton

Welllll I'm back in hospital! It's no surprise really it's just so shit, sorry but right now there is no other word to describe it other than shit!! Lol 

After my post on Monday I've just gone downhill. 

Everyday I had woken up feeling really swollen on my face, my head felt like I was going to pop from the pressure, my neck was fat and two massive veins on each side of my neck would be pumping and on display, was a horrible feeling and I thought it was just a side effect of steriods, I didn't think much of it as it had been happening the past few days and usually went once I took done anadin and/or inbuprofen. 

However Tuesday was a different story I woke up with this same feeling, took the tablets etching but it didn't go down, all day the pressure in my head was horrible, it got to the evening and it felt like it was getting worse, I asked my husband to bring my oxygen concentrator down from upstairs and sat on 3 litres of oxygen hoping it would ease the pressure in my head-it didn't! 

This was really unusually and scared me to be honest so I sent my mum a little pic of my face and said I don't feel right shall I contact the Brompton. She called the on call doctor and like she assumed they would say, they told us to go to our local  a&e to get checked out. 

So off I went with my mum around 9pm and got seen almost straight away, the Brompton doctor had called thru to a&e to let them know I would be arriving. The done my obs, Sats were 89-90% and they could see I was not right, they took me thru for bloods straight away- tried to put in a cannula which obvs I refused to have, and then they put me into the majors area. 

I can't fault the drs in a&e that night they were amazing and restored my faith in St. Peter's as I've had some bad experiences there in the past! They did ECG, echo, chest x ray and some other tests can't member names of but everything came back fine, they wanted me to stay in over night so they could do more tests the following morning as the radiologist wasn't there at that time of the night and they wanted to admitted me onto the ward. Buttt....

I refused and discharged myself, it prob wasn't the smartest or safest decision at that time but I had ascot that morning and I wasn't going to miss it for anything even if it was the death of me I would die a happy satisfied girl!! 

So Wednesday came ascot day..I woke up with a face the size of the moon!! And felt crap and I knew my body was telling me to not go but mind of matter, I got washed, I put my make up on and done my hair and grabbed my outfit and off I went to pick up my beauty squad and to enjoy the day I been wanted to do for years!! One to tick off my bucket list!! 

My face and swelling went down as the day went on and I took tablets to help and although there was shot loads of walking in heels might I add which I am terrible at walking in, once we got in I sat down most of the day! My friends were amazing and helpful I can't fault them, they made the day so special and glad I spent it with them!! 

We got a lot of looks and comments as we "didn't look disabled" the staff at ascot were awful and very discriminating against us cause we "didn't look I'll" if only they knew less than 12 hours before I was in a&e- bastards! 

Didn't let it ruin it and to be fair was fun winding up the old people who weren't aloud in the gomey area!! Ha!! 

The old people are the worst, at least you have the chance to get old!! 

And was told by the old guy letting people in the disabled area that, ok il let you but if someone with a wheelchair comes you'll have to leave...er no mate I'm disabled and have every right to be there, my bloody wheelchair was in the car aswell! 

Anyways we had fun and got chatting to a lovely middle aged lady who have us a few tips on what horses to bet! 

Group and 

So Thursday morning I got a phone call from bed manager to say there was a bed for me. I was so releaved, I really pushed myself the day before and I knew everyone at the Brompton would be angry but I literally didn't care, you don't know what will happen in future or where I will be this time next year so making the most of it! Lol 

I got on the ward and they all asked if I enjoyed ascot lol and then said the needed to put a cannula in so they could do a ct scan and inject dye into my veins to check for clots!

Scan was no problem but I hate cannula a, my veins are so rubbish, years as a chd growing up being attacked every few months with long lines and cannula etc! Anyways he got one in after an hour of numbing cream on (yes I am a woose) lol 

I felt so dramatic with it in, like those people I critise who can't move there arms, I was such a baby and couldn't wait up get it out. 

Had the scan which the dye felt so weird going in, my insides went so hot and tinglely and I felt like I had wet myself(I hadn't and was warned I'd feel like that) 

Results came back fine, no clots, it's a mystery to why I was feeling like that. 

So I'm not well anyways whatever is going on in my body needs to sort itself out. Lung function is down to 17% my infection markers are down again which is good, there 63 I think he said. They changed one of my ivs too Fosphomycin which is 4 times a day and takes an hour to go thru, I think it's making me so sleeping all I want to do is sleep, my lungs are aching so much and keep getting episodes of feeling cold shivery and feverish, I'm glad I'm here I need the rest and I just want to be well now! 

Rubbish health/Rip Freya

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