Sunday, 6 March 2011

Hospital again

I am struggling, struggling beyond belief, walking a few meters, seems like running a marathon. It leaves me exhausted, breathless and my heart pounding to stop, i feel like im going to have a heart attack its going so fast. I managed to go shopping for a bridesmaid dress yesterday, from the comfort of my wheel chair with my sister Kerrie and friend Hayley. I'm so ill i cant even drive. I enjoyed the shopping wrapped up in a huge coat in my chair, but even sitting i felt hugely out of breath.

Sleeping feels terrifying, I'm gasping for air and feel my lungs are struggling to inflate them selves. I'm only suppose to use my oxygen for short periods of time and as its only a cylinder i cannot use it while I'm sleeping or when I'm out as there is only 18hours of oxygen in it when its full, it is nearly empty. Stuart has had to carry me up the stairs as i simply cannot make it. My chest is in agony, im worried about my left lung, its always in pain and i had a bleed last night as well.

 We managed to go out for half an hour today as its Stu's day of, we went to the beach and he pushed me along the sea front with kia. I'm not even able to shower at the moment, I have no energy. I have decided, tomorrow i am going back to hospital, I'm not sure what they can do, iv been off IVs one day since my last admission, so its clear IVs are not going to help me. Perhaps they will sort me out some more oxygen, some to perhaps sleep if i need it, on a concentrator that doesn't run out as it converts the air into oxygen and maybe some portable oxygen. I'm not really expecting them to be able to do anything to help me get better, I don't think anything will work. I just want them to make things a bit easier. I'm still waiting for an occupational therapist to come round an access me for some things to help day to day life a bit easier. A thing for the bed so i can sit up while I'm sleeping instead of using 5 pillows which don't really work, A bench for the bath so i can sit whilst showering and a stool for the kitchen so i can prepare food without standing. I'm hoping if i go in i can get all these things sorted. Maybe when i come out, life will be a little easier.

I'm sat on my oxygen now and i know I'm not suppose to sit on it for hours, but i really can't breath with out it and my head starts to pound soon as I'm off it. I'm just hoping they can access my oxygen need properly.

I'm not really the type to go into hospital, so you know when i do things are really bad. I would go in today but going in on a weekend is more stress then needed. I will wait till my team is all in and hope they can sort me a bed on culm asap. There pretty good so im sure they can.

My ITV piece, I was so happy with it, it was amazing and want to thank ITV and Jacquie the journalist who interviewed me and created it. It was outstanding, everything I wanted to include was in it and iv had such great feed back. Lets hope it raises awarness and get people to sign the organ donor registar. I will be puting a video up of it as soon as i recieve it.

So wish me luck in hospital. Ill keep you updated from my hospital bed.


  1. hey
    Sounds like overnight 02 might be helpful - i was on this before used it during the day. They may also check your carbon dioxide levels overnight. Don't feel bad about using o2 - if you need it, you need it. I found the shower seat a total god send. It meant I could shower myself again and take as long as I needed. They are also very good for shaving your legs haha. hope it goes ok at the hospital...xx

  2. You took me back I used to have to sit on a stool when I was cooking dinner, I totally forgot about that!!

  3. Hi kirstie, I have just come across your blog! I am in a similar position to you although I don't have CF, I am on the transplant list and have been waiting 9 months so far. I got married just before I went on the list and am still waiting to have my honeymoon! I have deteriorated really fast over the last 6 months, been put on continuous oxygen and just spent 3 months in hospital but am finally feeling quite a bit better. Really hope they have found something to help you and you are feeling better very soon.
    Love Kerry xx