Tuesday, 12 April 2011

Home and housing

As I lay there in my hospital bed, the pain starts to shoot through my left lung, Its building slowly, my breathing is getting harder. In a matter of minutes the pain has gone from a dull ache, to overwhelming agony, not today, please not today, I'm suppose to be going home. I press the buzzer, '8 out of 10 pain, I need pain meds' I can't even move now, moving only makes the pain shoot through my lungs and halt my breathing, It hurts to breath in, it hurts to breath out. My sats are low on 02, my heart rate through the roof and my temp is up. Oramorph, Mst (long lasting pain med) they don't touch it, we work our way on to IV morphine, the pain starts to ease enough for me to breath.

This way yesterday, the day I was set to go home, but once the pain had eased enough for me to move, no-one could really persuade me to stay, I had a xray to check there wasn't collapse or any wholes in my lung and there wasn't. Off home I went. We had the task of setting up my spare room as my treatment room, moving my fridge for my IVs, my chest of draws with all my medical stuff in, another small fridge I had left at my mums (for food) and my oxygen concentrator. Were basically trying to make it as easy for me to be at home as possible, by having as much stuff upstairs, I should be able to spend the best part of the day up stairs and not have to go up and down them which I found out, I really can't do unless I really have to. Which is slowly, taking a step at a time, resting every couple of steps and collapsing on the bed.

I'm getting use to all the tubing for oxygen, I find it overwhelming how much has changed and I am fully dependant on others.

This morning, I found out what the mystery pain was in my chest, that I'm having to keep on top of with the pain meds otherwise I can't move or breath. I woke up to blood, blood in my mouth. I spat it out and I continued to have a bleed, It wasn't a awful bleed, but defently the source of the pain. This and the fact of how dependant I am on people has made me question whether the sidmouth property is the right thing. We went and viewed the one next to it today. Its finished and has people living in it. Its lovely, really big, nice home and I want it I really do. But If anything were to happen to be and my mum couldn't be with me within 5 minutes, like the bleed, then id be on my own, completely. Also I really can't do anything with out anyone and i know I'm going to have a care system in place but there are times when I want to go out socialize I can't just have my mum nip and pick me up and bring me round to her, Its a lot of petrol and time running back and forth. Basically I want to stay where i am, I really like my little house and so I'm going to try try try to get a stair lift fitted. I hope my landlord will agree, as the only other options are go to sidmouth, move back to my mums with Stu and kia, or wait and wait till a possibly suitable property came up.

To be honest, I have been wondering how long Iv got left and topic I'm very honest with my self over, but find really hard to tell others, I don't think Iv got years to wait for these lungs, in fact, Id be surprised If i survived a year with these lungs. Some people may think I'm being pessimistic, I don't, I just know, that if I don't get these lungs soon I will die. There seems to be very few people who understand that and I can't blame them for not, there in denial, they don't want to think of me dying, unfortunately Its the reality I wake up with every day. So being at home and settled is my priority, I want to just be able to relax and not have to worry about this stuff anymore.

P.s catch me on ITV westcountry tonight


  1. Hi Kirstie,
    I saw you on the news this evening and had to check your blog out. I am a 25 yr old male, and it brought a tear to my eye.
    You seem very mentally strong so please keep your head up, you are so pretty keep smiling. I am sure with all the love and support from your fiance, who sounds like a brilliant guy, and family, you will remain positive and upbeat, and get this lung transplant.
    I really do wish you all the best honey, I will continue to read your blog. I think you are so brave courageous, and admire you for it.
    Your story has well and truly touched me.

    Take care

    Rich x

  2. Hi Kirstie, I am really please you are home and just hope that your landlord will let you have a stair lift fitted. I really understand you wanting to be close to your mum.
    What a concern this morning was with all the pain you had in your left lung. I really do feel for you but please remain positive I am praying and hoping you will get your transplant.
    Love hugs and kisses
    Rachel xxx

  3. I watched your story on ITV tonight and felt the need to have a look at your blog.

    It has left me somewhat speechless. What a courageous lady. Keep strong x

  4. Am thinking of you. Reading your blog inspires me so much and I hope that if I am ever in your position I can face your situation with the same courage and dignity that you show.


  5. Hi Kirstie,
    Another amazing blog :) I'm thinking of you and am here following your journey. Keep strong xx

  6. Dear Kirstie
    We are all thinking of you and your bravery and strong spirit never fail to amaze me. Keeping everything crossed for you and that everything works out with the stairlift, living where you want to and most of all your much needed and deserved transplant. Lots of love and hugs, The Hazells xxxxxxxxxxx

  7. I'm so glad that you've made it home lovely, I hope you're able to get some much needed rest now!!
    Dawn xx

  8. Your one tuff cookie!! :-) There is nothing morbid about being real about what time you have left. We all think theres always tomorrow! I hope that your transplant is sooner than later, as you as like others, deserve a fair chance at life. As for the landlord and chair-lift buisness, well all I have to say is the house is bricks and plaster and in the grand scheme of things is nothing compared to the benefits it would bring to your life!! [rant over :-D]
    Seriously though, being realistic is one thing, but staying positive is a whole lot more!
    Nuff luv to you and your cookie x

  9. thank you for your blog posts. I also have cf and appreciate your honesty. I keep praying that lungs will come your way..soon!

  10. Wow, I came upon your blog by accident and I've read almost the whole thing by now. Your story has really touched me. I also admire your strength and tenacity... and your honesty. I am sending good vibes and prayers through out the universe so that you will be surrounded with love and comfort along with a new pair of lungs. Please stay strong and know there is a universe out there supporting you.

  11. I hope it isn't weird to say I love reading your blogs because most of them are very scary.. does that make sense?? I get scared for you reading them and would so desperately love to help.. why can't they grow lungs on the back of rats like ears eh?! chin up xxx

  12. hey kirstie i am a 23 year old cf and i must say i <3 your blog!! my mum told me to read it actually as we'd both seen your thing on russell howards good news and she thought we were very alike lol.
    I read ur blog and can relate to soooo much stuff, as i am currently going through the whole transplant shizzle too, well i am on list but now playin the waitin game, and its alot tougher than people think. I can quite happily sit there smilin and sayin everythings fine while i actually feel like death ( i have become very good at this over the years) but i just wish some people would open their eyes and see the real us and stop moanin how shite their lives are! when ours is a constant battle just to breathe!and i REALLY wish cf and organ donation were more well known and recognised. Annoys me to hell that if u say to someone i've got cf they just shrug and say 'ok' but if someone said 'i've got cancer' its like oh my god! sorry about my ramblings lol. well i hope you get home soon :) im in hospital myself too at the minute all the best and keep up the blog :) x x

  13. This blog made me teary hunni, I hope and pray that you get the organs that you need!! Try to stay positive you are doing incredible work raising awareness for such an important cause!

    All my love I shall remember you in my meditations and prayers xxx