Sunday, 28 July 2013

Struggling for breath

Short blog guys as I'm feeling pretty sick and don't fancy vomming all over my mac! I had a really bad night last night just struggling and fighting to get a good enough breath in. Even night nurse Sue who is always very calm was getting concerned. We checked my sats which were 99 unless I spoke and then they went down to 96. My lungs feel like they need oxygen yet the machines still are saying no - it's such a confusing situation. 
I spent a good couple of hours really struggling; it was just so scary finding it so hard to breathe. In the end it was very tiring and I ended up falling asleep. That's all I want to do lately is sleep..if I'm asleep I don't feel sick, I don't realise how much I'm fighting for each breath and I can forget about it all.  I'm feeling better today than I was last night but it still feels like a lot of effort goes in to every breath. 
Dr Higton mention about going back on to steroids - she should be coming round tomorrow so I'm going to talk to her about it, I cannot stand the side effects. I was so low last time I was on them & I don't want to go through all that again. 
Sorry for the short blog, I'm going to go try and have a rest now. Hopefully have some more energy to see my grandparents & Tom who are visiting later. Lets hope tonight is a better night :)

Saturday, 27 July 2013

Hotel Frimley Park Hospital

In the end I listened to everyone telling me to see the docs & popped down to the CF unit on Thursday - however I did make it to the end of work so I'm very happy about that! :) 
Very odd things happened..I did my lung function and sats (oxygen levels)...they were fine. Dr Higton took me for a 30 second walk but I was just gasping for breath. We sat back down in the room and all tried to figure out why I was so out of breath, yet my obs were all appearing ok? She said normally if a patient came in like that you'd assume it's a blood clot in the lung, although for some reason CFers don't tend to get those - but she thought she'd do some bloods just to check as it's not impossible..that was a long hour waiting for the results of that, just filled with panic at 'what if it's a blood clot' 'what is making me feel so ill' 'will I be staying in'. Luckily at 3pm the results came back negative - phew! Still back to square 1 where we have no idea what is doing this. So after a chat with Dr Higton we came to the conclusion it'd be best if I stayed in, especially with the weekend coming up - that way they can keep an eye on me. We're pretty sure it's just another chest infection. I've got my own hand held lung function machine and that read that my lung function had dropped from thursday - not sure how accurate it is but I think last time it wasn't far out.
Yesterday I had quite a lot of visitors which was really nice :) always cheers you up. At least I'm allowed my laptop, ipad, phone, any food, takeaways, dvds etc. Plus all the staff are LOVELY which makes it a lot easier. And knowing mum is only 5 mins round the corner is really reassuring. 
I did start to feel better yesterday but I think it was the adrenaline of seeing everyone, plus bit of a brave face. But yesterday evening about 9pm I was very short of breath again, felt awful. Tried a little walk but couldn't really manage. And this morning I've woken up feeling worse than when I came in!! I'm not breathing as quickly but I'm a lot tighter and feeling more 'yuck' which is really disheartening as I don't want to stay in here long, they originally said go home on Monday if I was feeling better, but now I'm feeling worse maybe I wont be. We'll see! 
I had a bit of a mini breakdown last night when everyone had gone home; why do IVs make me so bloody emotional?! This is my first hospital admission without Sammy. My lovely friend Samantha Morris passed away about about 10 months ago, whenever I was staying in she was always in too so we'd text or be sneaky and try to meet up in the corridor. The amount of times I have gone to my phone to text her, I even found myself beginning to type in her name at one point. It just all hit me - I didn't have my sidekick in the next room. The only reassuring thing is whilst I was a blubbering mess my little light flickered once..I swear! She must be keeping me safe whilst I'm in here..either that or trying to scare the doo-dah out of me knowing her! :) I then layed there in the dark thinking, & without wanting to sound morbid, I realised that this is life, it's not just some little thing that'll go away as I often try to convince myself & others. Hospitals. IVs. All of that. Yes I know I'm not in hospital often but at some point I probably will be..when I was a kid I always had this thing of 'it'll never happen to me' as I was always so healthy. But it's a times like these it's a bloody big reality shock that makes you realise that you are stuck with this and it may be ok for a while but it does come back, it will come back. 
Even when you're not as sick as people on the transplant list, but you're so out of breath just walking to the bathroom, transplant always crosses your mind, even if it's a distant thought for the future it's still there. Some fellow bloggers have had some really hurtful comments on their blogs when they've been open & honest like this, so if you don't like this sort of thing then just stop reading & go - I never usually write or talk about this sort of thing so it's taken quite a lot to do this - if you don't like it, lump it ;)
I'm just so thankful I have the most supportive family and friends around me because without them I wouldn't manage any of this. My mum is here everyday, nearly all day, and if I needed her at 3am because I felt worried I know she would be down without asking any questions.
Anyway, on to something slightly cheerier! My fave night nurse was on last night, Sue. She came in, gave me a massive hug and said she'd missed me. We always have such a laugh which really makes it so much easier as night times when you're feeling ill are horrible. I'm going to ask later if I can leave the hospital to go out for some dinner but the hospitals regulations have changed so I might not be able to! Maybe I should start digging a tunnel just in case ;) 
I'll keep you all up to date when I can, fingers crossed for getting out Monday so I can finish my IVs off at home!

Monday, 22 July 2013

Breathing comfortably is overrated anyway!

I've been feeling rough on and off for the past few weeks, but last weekend it really hit home. We'd been out for the day for mum's we started walking around Arundel Castle and it's gardens I was getting pretty breathless and although I wanted to just go in a wheelchair, I was adamant I would walk around. Somehow I managed and we stopped off at the beach on the way home, the lovely salty sea air helped and I felt like I could get a better breath in. However as we left I soon went back to feeling shitty again.
In the evening we went out for dinner and at the start I was like I'd been all day, quite tired and a bit breathy but still carrying on like everything was fine but halfway through I just felt myself getting worse and worse. It's pretty damn scary when you can notice from minute to minute your breathing deteriorating. In the end I did tell mum how bad I was feeling and tried to calm myself down.  In the car on the way home I kept getting flashbacks of when I was really really poorly and just thinking that I didn't want to head back down that slippery slope. Instead of staying up till the early hours of the morning celebrating I got home and just fell asleep in bed, exhausted from the effort of breathing all day.
I'm feeling better than I was last weekend, although even now deep down I know my lungs are struggling.  I had that Monday off work and did lots of extra nebs, relaxed and just did nothing. This weekend just gone a similar thing happened and I just felt horrendous again. I know it's very hot but I feel like I have a's a different feeling to 'just feeling hot from the weather'.
I've got hospital next Wednesday for a Kalydeco check up so I might speak to them about possibly starting some IVs for two weeks - although I am tempted to ring before then, possibly Wed after work to start some early if I feel worse. I'm feeling pretty dizzy and spaced out this evening so I'm not sure if my O2 levels are a bit dodgy so I'll see how I go and either call early or speak to them next week.
What winds me up is when people go 'ah but you're carrying on with everything you must be ok' I appreciate if I was VERY poorly I wouldn't be carrying on with things BUT just because I am doesn't mean I'm not finding it hard to breathe. I carry on because I want to and hate letting people down. All the time lately every breathe is feeling like a lot of effort - if I said every time something was a bit of a struggle people would think I was making it what's the point in telling them? 

Only two more days left at work - a bonus to working in a school means 5 1/2 weeks of summer hols!

We'll see what happens and I'll update you next Wed :) Thanks guys & girls

Tuesday, 9 July 2013

Another angel gained her wings..'Transplant Week'

Sadly, yesterday, another gorgeous girl passed away.  Emma was only 20 years old and on the lung transplant list but unfortunately her lungs didn't come in time.  She was lovely and bubbly; so many of us are just devastated by the news. You can't ever seem to put in to words how you feel and each time another CF friend leaves never gets 'easier' and you never 'get used to it' - each time it just cuts a bit deeper.
But also it opens up old wounds - every time a fellow CFer looses their battle, I ALWAYS think of my be honest, I think of her lot anyway, but at times like these I just want to cry and see her, be with her again and muck around, laugh and plan cocktails like we used to.

This week is TRANSPLANT WEEK - PLEASE PLEASE PLEASE sign up. There are never going to be 'too many organs'. Too many people like Emma are loosing their fight because lungs are not available often enough.  And it's not just lungs and CF patients.. people need heart transplants, eyes, livers, kidneys..
Just think - would YOU accept an organ if you needed one? If yes, then sign up..don't be hypocritical. It takes 2 minutes to type your name in, click which organs you want to donate and they send you your card. And make sure your family know your wishes. I have CF and I'm still on the eyes, my heart..possibly liver or kidneys depending on their condition. You never know if you or a loved one will need a transplant, and how angry would you feel if that transplant couldn't happen because there weren't enough organs can't even imagine how that must feel to families and friends of those who don't make it. You can only be on the transplant list for so long until your body decides enough is enough. 

Transplants save lives. That's the end of it..your don't need your organs in Heaven so leave them down here and save peoples lives.

PLEASE take two minutes of your time and save somebodies life.