Tuesday, 21 June 2011

My thoughts on a few things over the last few weeks

I just wanted to write a quick blog on some of the serious stuff I have skimmed over the last week or so. So I will start with Monday, 999 call. For me it was the most scariest thing I have ever been through. I don't wish to ever replay those moments but know with my lung disease it is most likely to happen again. My breathing felt awful all morning and had done for about a week, to the point where i felt unable to breath on my own. My lungs weren't expanding enough and all I felt like was I was suffocating and it wasn't peace full or painless. I felt like I was dying and It was not everything I was promised or imagined it to be. The worst of what happened was when me, my mum and my 2 carers were there and the ambulance was on its way. Something suddenly changed and I felt shere panic, I knew If something didn't change I was going to die. I didn't feel like me and everything felt all wrong. I couldn't keep breathing, I couldn't hold on, I could hear my mum screaming at me but I think suddenly I gave up fighting and that's when things became a little bit easier. The ambulamced arrived and we were stuck for ages on just how to get out the house, i couldn't come of bi pap as i couldn't breath on my own but I didn't have a portable one.

The next few days after that were talks of hows and ifs about the wedding, I know some hard conversations were had about me and I think alot of tears were spilt. Another little thing I have to clear up is yes I was extremely poorly but i wasn't resuscitated. This is also not possible for the future as I have a DNR (do not resuscitate) due to the severity of my condition now, if i was to be resuscitated I would be put on a ventilator and unable to come off it making transplant impossible and only prolonging my pain and suffering. I am still determined to get a transplant but I now I need these things implace as I feel I am walking such a fine line now.

So enough of that for now, I made it, I made it to my wedding. The day was truly amazing, I can't really describe how much it meant to me and seeing everyone there. My CF team literally did everything they could to get me there and make it as stress free and easy as possible. My little bridal team did everything for me including my mum and sister staying the night before the wedding in the hospital and having Chinese. Everyone was amazing. Mostly my husband, when I saw him i couldn't help thing how handsome he looked even though he was blubbing, I choose the best man for me ever. We spent alot of the day together, everyone says you don't get much time together on the wedding, but we did. Which im so glad about, as it was our wedding. Our day. The speeches really touched me, my Dad isn't the best at public speaking, he was so nervous, but his speech ment so much to me and i don't know whether it was just me but it was the clearest Iv ever heard him speak and what he said was important. My husband blubbed again, but did such an amazing speech, making everyone laugh as usual and his best man was also amazing. It was just the best day of my life. I wouldn't change a thing, all the little quirks are what made it unique and at the end of it all It was about our love.

Now, well I'm home, after a brief trip back to the hosp to make rest and get some more strength. I'm needing higher 02 now and waiting to get a portable bi-pap as I need it alot more now. I'm on a cocktail of stronger drugs, anxiety meds(to calm me and my breathing when your as ill as i am your body feels like its should be in a constant state of panic but that isn't very helpful), higher pain meds and if they don't do the trick im going back on the sub cut injection of meds. Its a little cannula that stays in your belly and slowly injected your meds over a slow period of time, via a mini pump.

I am on my honey moon now and I'm going to have a bloody good time.


  1. You are so brave Kirstie; a true inspiration and a wonderful human being! Despite the shit life has thrown at you, you are one of the most positive people I have ever come across!! Enjoy your honeymoon, I am so pleased you got your special day!! Joey xxxx

  2. ((Kirstie)) Unfortunately, I can identify with that terrifying experience of feeling as though you're suffocating, and waiting for an ambulance knowing that you're going to die if something doesn't change or someone doesn't do something :(
    Enjoy your honeymoon, you deserve to have an amazing time hun!!!!!
    Dawn xxxx

  3. Kirstie, I saw you on the TV last week, the coverage on the news of your beautiful day and the fight you had to get there. I had to fight back the tears watching you walk down the aisle with your Dad, I really don't think many people could really appreciate just what an achievement that walk was! You truely are amazing and an inspiration to so many.

    I can relate so much to the feelings you describe at the beginning of todays blog. I can remember back in 1996 sitting in the bedroom with my husband who was in a very similar position to you and was also on the TX list. How on earth we got him to the hospital I don't know. He too was treading that fine line.

    He also had the fight that you have and went on to have his DLTX in March of 1996. We're now 15 years post tx. So hang on in their Kirsty, keep doing all that you're doing and I truely believe that your chance is not far off - you've not fought as hard as you have todate, for it not to happen. It will!

    Sue xxx

  4. You write a great blog. You are amazing. Hang on in there and your turn will come x

  5. Hi Kirstie,
    I'm a writer for Real People magazine. We were blown away by your story in the Mirror today.
    Would you be interested in telling your story in our magazine?
    I know it may not be a consideration, but we do offer a fee to all our interviewees for talking to us, which could be a cheque for yourself or a donation to a charity of your choice.
    Let me know what you think,
    thank you,
    Luke Chilton
    Real People magazine
    0207 339 4467

  6. I wish You all the best. The best from all what you are dreaming of.

  7. Dear Kirstie
    I have been following your blog for only the last month, and you have had such an impact on my daily life. You cannot begin to realise what an inspiration you are to me and im sure to many C.F sufferers.
    I am a paediatric nurse that has cared for C.F patients for over 10 years. Many times i have heard the discussions of transplants and always thought that i should register to become a doner, however there was always something that stopped me. Silly i know, but after watching you walk down the isle and seeing how breathless you were and your Daybreak interview, you gave me the motivation to stop putting it off and sign up, (which i have now done).
    I have chosen to comment this time to let you know that your story has touched me and made me finally sign the register, your campaining is working you have got through to me and i am sure many others. Hopeing you get the call soon. With love.XX

  8. you're amazing,
    Im so glad you're married to your love

  9. Congratulations on your big day. I'll reiterate what others have said, you are truly an inspiration to all.

    I hope you get that transplant call soon. Good luck Kirstie, we're all thinking of you

  10. Lynne Gumery O'Grady1 July 2011 at 06:57

    thinking of you Kirstie and your family and wishing you the best..always xxxx

  11. I watched you on Russell howards good news, It was extremely moving , I hope you get your transplant . Enjoy your honeymoon, Probably saying the same as everyone else but you really are inspirational. You made me have a serious re think about putting my name on the organ donor list ( I can't lie and say I have done it yet but I will be doing so) and It is all down to you ! Your amazing !