Saturday, 22 January 2011

The letter has arrived

So since starting my Blog yesterday, I seem to have had quite a lot of traffic, whoop whoop. Thank you those who have commented, Its nice to know people are reading.

Well, I actually wrote that blog a couple of days ago but only got round to putting it all up yesterday.

So here's Yesterdays Blog, I won't be blogging every day, only if I think its something interesting and topic related, perhaps a little jibber jabber as well.

Me and Stu were both in bed, he had gone downstairs to pick up the mail and there it was, my 1st transplant assessment appointment, a few tests and a chat i believe, 2nd of February just over a weeks time at Harefield in London. Lung Transplant Is done in hand full of specialist transplant centres across the country, Harefield is my closest.

 Its all so close I feel a bit panicked now, who's going with me? Stu or Mum? Where do i stay? I can't do a day trip, Ill have to stay over night, the apps at 9:45 in the morning. Now i wouldn't say I'm lazy but I'm not a morning person, you see my lungs need time to wake, open up, let the morning treatments do there work, they can not and do not with stand a 9:45 morning assault. I will have to wake at 7 to be ready and there in time, I'm not even sure if that will fit all my morning treatments in.

So me and Stu had a brief discussion, basically he won't be able to make it he'd need a few days off and won't be able to get them, Mums happy to come with me, not that she has much choice. I'm going to stay at my Dad's and my Mum will stay at her friends.

So the other things I'm worrying about, the main one, am i to well. You would think this wouldn't worry anyone and that being to well is a good think and it is, but if I'm to well now, the way my life is, then what on earth will it be like when I'm not. I don't want to use the word desperate, but I'm closing in on that, i have so many day where I'm desperate for change, for health, just for that well feeling. Where my bedroom walls seem just to familiar. I need this, I need my life back.

I'm sick of my Mum having to come over all the time to do stuff for me, or drag me out of bed because i just don't have the energy, I'm sick of Stu waiting on me hand and foot. I don't want my Mum and Fiance to be my carers just want them to be my mum and my fiance. I want to contribute more to there lives then hospital visits, medication, stress and heartache.

I then had to ring my nurse to let them know I have the letter, they want to know whether to start me on IVs now as I'm feeling bad already, but I don't really want to just yet, I do feel ill, tired, very breathless, lethargic and alot of temperatures, but I'm not at my breaking point yet. I know its silly saying that but i feel silly starting IVs unless I'm really indeed of them, plus iv only been off them 9days :-(. My nurse said I need to go up to Harefield in a reasonable state, not on deaths door, which i know is true, but I'm just not ready yet. Hey I'm even planing to go out tonight, for the first time in ages, possibly even a year, i can't actually remember. So I can't be that bad. So i will wait till after the weekend, if i can at least draw it out till Thursday then that's a whole two weeks.

Well Thanks for reading.


  1. I'm like your stalker - first one to comment on a blog post again! yay!
    Have fun tonight if you do make it out.... try and stay away from EX4 - lol

    Don't struggle without IVs unnecessarily sweetie...x

  2. kirstie as a sister you make me so proud , i love you so much for who u are and what u have achived.
    and when i talk to people about u i smile :)

    love u so much kez xxx

  3. keep your smilie head on hun, things can change, I go sent up for transplant assessment in 1999, they said I was too well for them and still have my own lungs today. Lung function is as 25 to 30% depending on weather its my month on the new cayston/asli nebbed drugs.

    I will be thinking about you when you go up. Take care & keep being possitive.


  4. Good luck at the assessments Kirstie....hope they go how you want, and have a nice night out.
    Take Care x

  5. Just wanted to say good luck with your tx assessment Kirstie!

  6. my boyfriend is looked after by the staff at the royal bromtpon and has been for 4 years since he left great ormond street. they are such a nice group of people and im sure you're in the safest hands. my thoughts are with you. good luck :)

  7. Kirstie your blog is awesome! The way u write pulls me in!
    I can definately relate to a lot of stuff u say! I always feel like I want to give more to allie than just doing a few house chores. Tell her many times that sometimes it feels like she my carer and that's not the best feeling when we r married!
    I get tired of the same walls to and some days become desperate to break out and do something for a change! I'm glad u went out the other night! It's important to do these things when u can! Otherwise at times it can be a very lonely existence during the day when everyones at work!
    I hope u feel better soon and I'm gutted u feel crap! 9 days isn't long off the iv's and I'm sure u must be feeling like it has all come around again to soon! Try ur best to hold off but don't leave it to long! Look after urself and keep up this amazing blogging! I hope ur first appointments go well and look forward to hearing about them! When I went to my first appointment about 2 months ago I was excited and left feeling strangely even more excited! I guess I feel ready at this point in my life! Being unwell again and again just reminds me of that!
    Get well soon miss and keep up the good work! Xxxx Alan