Sunday, 15 May 2011

I just want to go home

I feel no need to stay here anymore, there is nothing more the hospital can do for me. They want me to stay, but I see no point. I'm just another person clogging up the Nhs. They agree with me that there is nothing more treatment wise they can do in the hospital, I'm already receiving everything I can at home, I have all the care I need, all the drugs. So I might as well be in the comfort of my own home until other treatment options open there selves up to me.

My breathlessness is far worse then ever, I feel like my hearts going to explode under the strain. Every time I need the loo, I take my 02 off and rush to the loo and come back ready to collapse. Its just easier that way, I'm to weak to carry the 02 cylinder and to desperate for a wee to mess about. At least in my home i have 02 all around the house.

The bi-pap, It is a god send when your simply so breathless you've forgotten how to breath, Its hard to put on when your in a mess like that but when you do, the rest is so nice. When I take it off I feel like iv suddenly forgotten how to breath, then I realise that's how I always breath and its just really poor now. It allows me to sleep alot better, but I feel Iv deteriorated since being in here and could do with the pressures raising already.

Its strange when you see the concern in your doctors face, I simply try to replace it with my chipper Wit and I can usually see it disappear to the back ground but it never goes. I wonder whether the same concern lingers in my face, but clouded by my positive attitude.

It was mentioned to me the other day 'I know your in a bad place at the moment and your angry' this shocked me you know, yea I have moments of anger and why me but I would never describe myself as being in a bad place, in fact the opposite, I feel positive and at peace with everything. Yes this is shit, but I'm going to get through it and I will be so much stronger for it and that is why it is me, because I can cope with this.

A bit more media work, I was on the front page of my local Tuesday, fronting the organ donation campaign Article 1, then Wednesday Article 2 and finally Saturday Article 3. So as you can see a solid campaign in the southwest. I'm also going to be in a documentary for BBC3 on transplant and organ donation if all goes to plan. There has been some solid campaigning from all my facebook friends over the last week and live life and give life have put some great campaigns out which Sarah brown (Gordon Browns wife) re tweeted.

I'm also wedding central at the moment, planning and double checking as the big day is a month away!!

So Ill leave it there for now, hopefully i will be home when I write my next blog.


  1. Sometimes it's hard to see out of the positive bubble we create for ourselves. I remember just before I got my transplant the lovely Gemma emailed round people asking them to show me support because I was having a hard time, I remember thinking I wonder why she's doing that I'm totally fine just the same as normal. But when I look back and read some of the stuff I wrote I can see how much I was struggling.

    I'm not saying for you to come out of that bubble because to be honest we need it to keep going but just remember other people see us different.

    Always thinking about you!!

    V xx

  2. For one thing, you're most certainly NOT "just another person clogging up the NHS"!! I can completely understand why you'd rather be home though. Are you still aiming for discharge tomorrow?
    One month til the wedding?! How exciting is that!!! :-D
    Take care hun xx

  3. You never fail to amaze me with you upbeat and positive attitude, you are a such an inspiration. You are the most determined person I know and with all the love and support you have I'm sure you can achieve anything. The work you are doing to raise awareness on Organ Donation is fantastic and I feel honoured to know you and get to give you a few hugs in person! I hope you do get to go home tomorrow and then we can pop over and talk wedding plans real soon!!
    Take care

  4. Haven't met you face to face Kirstie, but you have touched my life through my job in the good old NHS.
    Hoping that I can help in a small way.
    Keep strong.
    Jules McCracken CHC assessor.

  5. Hi kirstie
    I am glad to hear that the Bi-pap is helping you.I have been using mine since I my transplant it has helped me a lot for CO2 retention problems.I hope that you will be able to get back home soon and that you will be more comfortable in your own home where you have oxygen set up.
    Best wishes and good luck on your forthcoming wedding and hope you get your call soon:)