Thursday, 24 March 2011

We'de like to offer you a place on the lung transplant waiting list

We'd like to offer you a place on the lung transplant waiting list, a sentence i have been waiting to hear and when it came i could feel the tears coming to the surface. Something I have been waiting for so long now, iv felt on edge and nervous, waiting to know. But now the decisions are over the verdict is in. I will be on the active list as of Monday once all the paper work is finished and from then, i shall try to forget that I'm waiting for a call.

On other news, I had an awful night last night, sky high temperates, racing heart of 140-160 and 02 levels of 90 on 02. I was gasping for breath and clearly in distress. I had bloods done, but that's all. I think times like these when i was clearly unwell i should have blood gases done. I felt so out of breath and ill. Once I cleared my lungs, my temp came down, my Sat's and heart rate started to settle and i felt i could breath. I think it was just my lungs were so full with Flem over night it sent my temp rocketing.

I'm hoping to get home earlie next week but I'm having a meeting with my team and a few other people to discuss ways I can stay at home and how they can make it easier for me. I hope this makes life easier. I also started filling out esa forms today, to claim some money as I can't work any more. Its impossible, i hate them and there driving me crazy. They don't make it easy for you to claim when you really need it. They also sent through a form for council tax benefit and housing benefit i don't know if I'm entitled to it but ill fill out the form and hope i get some money. I don't know how I'm going to live for the next couple of weeks, its going to take a while to get any money through. The last thing i need is money worries..


  1. So happy for you! Was there any reason for you to doubt that you would not be excepted? I am sorry money seems so petty in a time like this but unfortunately that is how we live on this earth. I think almost all CFers go through a time where they have no money due to illness, something is so wrong and cruel about that.

    Like I said I am so happy for you that you will get a second chance at life!! I hope to get that one day as well. I will be praying for you do keep your strength up! Much love!

  2. Just seen you on Russell Howard's Good News on BBC3, touching stuff. I hope you get all the help you need!!!
    Reading your blog from now on. Good luck with everything

  3. Hi there Kirstie. I just saw you mentioned on Russell Howards "Good News" and immediatly looked you up. I am so pleased that you have finally been put on the wait list! Awesome news!

    My cousin (19) has CF too and I think she may find your blog interesting - so I have sent her the link also :)

  4. Hi Kirsty! Like some of the others here, I also heard about you on Russell Howard's Good News. What an amazing girl you are, and brilliant news you're on the waiting list. I'm a Taunton girl myself and have visited Honiton many times, so I know your beautiful part of the world. Your strength and willpower really puts the rest of us to shame. I'll be reading your blog from now on, and sending love and prayers for you. Keep it up girl, you're a real inspiration.
    Alison xxx

  5. Hi guys, thanks for all your comments, It means alot to me. rebecca, there was no reason as to why i didn't think id get on the list but i guess, just fear that they wouldn't see me and how ill i really am, Im very smiley and happy in person and sometimes that comes across as me being 'well' when im really not.

    For those who saw me on russel howards good news thanks for your comments, i didn't actually know i was on there tonight till several friends messaged me on fb! Wow, thanks to russel howard for re showing my piece and helping raise more awarness!! In tuning in at 12:30 as iv been told it is on again. gota say i think russel howard is hilerious and hes now swung his way to my next top comedian to see live :-D xx

  6. Like others, i saw you on russell howard's good news. Hope all goes well for you and will be reading your blog from now on. You are such an inspiration and have shown such strength. Praying everything works out for you.
    Maybe see if you can write to russell howard annd get tickets from him to see him live and backstage

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  8. I recorded family guy and it had caught the end of Good News where I saw you. Looked you up straight away. Started following you so I can get your updates. Money problems suck, but if you have a paypal account or something I'd be happy to donate. Even if it only pays for a DVD or something to lift your spirits when you're feeling down :-)

  9. Thank you for the offer, but i couldn't take your money, Im sure things will work out, it just make take a while. Many thanks

  10. Hi Kirstie

    As with others, I saw you on Russell Howard's show last night and made a note to find your blog. I think it's the first time I've ever been moved enough to do that.

    Amazing news that you've been offered a place on the transplant waiting list. Forgive my ignorance, but I'm not sure what that means in itself - could the call now come any day, or is it likely to be weeks or months before you get it? I'd assume the list is prioritised? Would be great to learn more about that if you feel like writing another post soon.

    On another note, my parents live in Sidbury, just down the road from you, so I pass through Honiton quite a lot when I'm down in Devon visiting them. Beautiful part of the world.

    Anyway, good luck with everything. Have signed up to your RSS feed and, if you don't mind, I'll be passing your blog around my Twitter network today.

    Take care.

  11. Hello Kirstie I am so pleased for you I was thnking about you all day yesturday and my dad was saying his prays for you. I really hope everything works out for you and lets hope your team will be able to put a plan together so you can get home and be comfortable with your breathing. It was nice to see you in person yeasturday (Wendesday) and you are such a lovely young lady who deserves the best. Hugs and kisses Rachel x

  12. Hi, I also saw you last night on Russell Howard's Good News and had to drop you message - you are truely inspirational! I am so glad to hear that you are now on the waiting list! I've posted links on my Facebook and Twitter feeds to spread the word about organ donation. I am also thinking about handing out leaflets to people on the street to spread the word further, I've had a look on the organ donation website and it seems like they can give me free stickers and leaflets which is great! I hope everyone reading this will give it a try!

    All the best

  13. I just came across this after the link was posted on Russell Howard's facebook page. This absolutely breaks my heart as a close friend of mine has Cystic Fibrosis. She's only 17 but has been in hospital more this year than I have been in my entire life...

    I hope everything goes smoothly with the transplant when it comes around.

  14. Hi Kirstie, like some of the people above I also seen you on Good News and wanted to look you up and wish you well.

    It's great to hear your now on the list and so positive and thinking of others. I wish you all the best and good health for the future and pray everything works out for you.

    Paul :)

  15. Same as Stacey, I saw this from Russell's Facebook page. Good luck for the future. You definitely deserve a break.

    I do not know what else to say other than I hope you get what you deserve. People take so much for granted these days, it is humbling to read your story. I have never suffered a serious problem (bar a broken wrist so I had to wipe by bum with the other hand). Your story will give so many people strength. Respect to you always.

  16. hi, i saw you on russell howards good news and i think you are such a brave girl. shocked to find that you actually live quite near me!! keep on fighting and we're all here for you!! x

  17. Same as a lot of people here saw you on Russell Howards Good News.. I wish you all the best for the future and I will be checking your page regularly now.. You are a very strong woman.. best wishes Alison :0)

  18. I just wanted to say good luck :-)

    I read through your blog with tears in my eyes, it kinda brought back memories. My Dad had a liver transplant in November last year, and I remember just how traumatic it was for everyone. I remember the day he got accepted onto the list like it was yesterday, we were all in tears. Tears of relief.

    And I also remember that feeling of being on edge waiting for the phone to ring once you are on the list, I guess thats what you are going through now.

    I really hope everything goes well for you, I will be following. Massive hugs to you xxxx

  19. People like Citizens Advice Bureau are brilliant for helping with ESA forms, there should be a support service (free) in your area, ask your local (town or borough) council.

    Good luck xxx

  20. like everyone else here, i saw your blog mentioned on russell howards fb page and have just read it all...
    I wish u the best of luck with your CF and transplant!!

  21. Dear Kirstie,

    I also heard about your struggle on the telly.
    I find your story so inspiring yet so sad too... though many people like myself will no doubt draw courage from your story because it puts their troubles into perspective it must seem terribly unfair that you are landed in this role without having asked for it. However, I guess the fact you want to raise awareness of your conditions means that this is a role you have in some ways accepted, which is commendable indeed. But it still isn't fair.

    I hope your blog gives you some freedom from the bordem of being in hospital all the time. I remember how boring it can be! And as a fellow pole dancing chick who is in love and full of things I want to do, I just wish there was something that could be done to give you your freedom.

    Look at me rabbiting on as if I know you!

    Anyway, I'll be following your blog from now on... and I think lots of people whether they know you personally or not care about you and wish you well.

    Stay strong lass.

    S xxxx

  22. Just a quick note to wish you lots of strength and luck. My girlie is now 13 and although seemingly well, dealing with her CF, and yet I constantly worry what the future holds for her. I'm so glad to find you sharing your experiences. I look forward (if in slight trepidation) to catching up. Keep strong!

  23. My daughter, Page, says you must get better soon. x

  24. Hi. Like a lot of the other people on here I've just seen you on the Russell Howard prog. I've added a link on my fb page asking people to consider joining the donor register. I'm a diabetes nurse and used to look after people with CFRD - one who went on to have a beautiful son and one who had a transplant that changed her life. I'm keeping my fingers crossed for you to get that call soon. Karen x

  25. Hi ya
    Saw u on Russell Howard as well so looked up your blog asap, as my 11 week old baby girl was diagnosed with cf following newborn screening, you are truly an inspiration and such a brave lady.
    Best wishes
    Liz xx

  26. Hi, I'm another person who saw you on Russels show the other night. Just wanted to say keep fighting and great news about the transplant list :-) best wishes

  27. You seemed to have mispelt early btw.

  28. Hi, I also seen you on Russell Howards Good News.
    You are truly inspirational,
    I have CF myself, not as bad as yours, and you have completely changed my views on things. I usually complain so much about how I'm always unwell, and when I see you being so strong It makes me feel I have no right to complain.

    It's great news about getting on the list!
    I really hope everything goes smoothly and you can get on with your life :).

    Also, Im claiming esa, I know all the interviews are stressful but you should be ok!
    I don't know if you have heard of The Butterfly Trust, their a charity that helps people with CF.
    They have helped me out alot with everything to do with Esa, housing benefit and council tax benefit. You should get in touch with them if you aren't already :).

    Take care, stay strong!
    Lauren xxx!/profile.php?id=614760885

  29. Pleased to hear you are now on the waiting list. Im a similar age and really dont think I could cope with, or go through what you have. As others have said, it puts our "problems" into perspective.

    The government should be paying for everything for you at the minute, take the money off the work shy bloke down the road who has a "bad back" but still manages to do cash in hand work and give it to someone like yourself who deserves it!

    Best of luck with everything.

  30. Hi Kirstie,

    Like others, I saw you on Good News (recorded as we were away) and I immediately looked you up to let you know that for years I have been unsure about joining the organ donor register and hoped my family would make the decision for me if the worst were to happen. Tonight, I have taken that decision out of their hands and signed up to the register (via your blog). The thought that you're struggling every day with CF and you would pass on any organs if the worst were to happen to you was really inspirational for me.

    Thank you for the gift you give to the world by your optimism and presence and I wish you the very best and hope for a long and happy future.

  31. Like so many others we saw you on Russell Howards Good News and was touched by your story and have come to wish you well, its fantastic to hear you have been put on the list, and I think that you will find no matter what its going to work out for you.

    You almost have a army backing you up now lots I expect who would be willing to give you one of their lungs, myself included.

    Be strong as you have been. We are all here for you in sprit.

  32. Just seeing you on telly made a great inpact on me i am on the doner's list and would love to be a doner for you so you can have a happy life with your fiancée :)

  33. I know you may be getting a lot of this but I also suffer from c.f and know what the struggle can be like each and everyday but seeing you get the recognition you deserve gives us all the belief, your doing a great job!

    Also wanted to say thanks for writing the blog, it gets pretty dam lonely sometimes but being able to read your blog and relate to someone who knows what it is like is a massive help as well :) x x

  34. Hi there like many others I spotted you on good news and just wanted to tell you what an inspiration you are. I have read your blog from the start onwards and I must say you seem a very wise and brave person. love and best wishes xxx