Sunday, 22 September 2013

Slight blip on the path to recovery but life continues

So Monday I woke with terrible chest pain, a sleepless night of tossing and turning and only being able to sleep on my back as the pain increased and felt like my heart had moved to where the pain was and pulsating through it causing me agony. Off to exeter hospital I trotted, I know any signs of symptoms of things not being right I have to get checked out due to my gastric/oesophagus issues and the possibility of refluxing into my lungs despite my fundo wrap. Also regardless of these issues anything wrong at such an early stage post transplant is amplified and can cause a lot more damage. I'm still shaken by my chronic rejection with my first transplant and so feeling very nervous about any little thing.

After a slightly fuzzy X-ray and a temperature I was transferred to harefield, put of tramadol for the pain and told I may or may not be bronched. Wednesday I was put on the emergency bronch list and starved all day for a bronch that never happened, but instead went ahead the next day. I dislike bronchs a lot, after waking up in agony from one with a collapsed lung.

I woke up still in the theatre, I usually wake in the recovery room, straight away blood came flying up from my lungs and most of it ended up all over me and some into a bowl. I hate it when you first wake after a bronch and those first few breaths feel really hard as they have been assisting your breathing through it, it like you've forgotten how to breathe on your own. That's how I always felt after using the bipap but 10 times worse because my lungs at that time weren't really sure how to breathe most of the time.

I was wheeled into recovery and continued to cough up a lot of blood, you cough up blood when they take biopsies, they always take biopsies with me now to check for aspirations due to gastric/oesophagus problems and chronic rejection. This particular bronch must have just caught a well perfused area as iv not coughed up this much blood since pre first transplant.

Later that day I was told that the bronch looked very clear and although there initial thoughts were infection there was no mucus in my lungs and it may be a virus which I seemed to have gotten over on my own. I would be allowed home as soon as my biopsy results came back.

Unfortunately the results didn't come back completely clear, I was told instantly that they were not at all worried and neither should I be. Easy for them to say but I'm still dealing with the emotional fall out of chronic rejection and being told I was going to die, so anything slightly squiffy worries me as i've said. It seems I have organised pneumonia, which I had as the very beginning of my chronic rejection and reflux issues. Organised pneumonia isn't a bug or infection as it sounds like, it's a immune response to something not quite right, it's inflammation in the lungs caused by the white cells, the treatment is a medium dose of steroids. Organised pneumonia is believed to be linked to reflux and the end of virus's or infection. So it could be from the end of my infection I have recently finished Ivs for or it could be a sign that my liquid/soft food diet and other precautions taken against reflux/aspiration is not working and either prof Hannah will have to have a rethink to see if there's any surgery he can do to stop it or I will have a peg fitted into my jejunum (small bowl) and be nil by mouth forever, the aim of this is to bypass my stomach so food doesn't reflux into my lungs. For now I'm on 25 mg of pred and I guess we will see if this helps and my lung function continues to improve and a biopsy will be repeated soon.

I remain worried, but obviously positive. I see myself as a very pragmatic person, a realist and there for will deal with this in the same way.

So now I'm back at my Nan's and life is continuing. Therefore leading me on to my good news and exciting week. Me and Stuart have made an offer on a house and it has been accepted! We are going to be home owns. This is a dream come true, I'm so excited that we got here, we made it all because of my two amazing donors, I will never forget them. Also it is nearly my birthday! I am so excited another birthday I didn't think I would make and there for feel it is slightly more special and a time to say thanks for all that I have. I cannot wait to celebrate the gift that is life.

Lastly I took my first walk for months with Kia yesterday on arriving home from hospital. It amazed me as I walked how effortless it was to breathe when before it was so hard, like every breath could be my last and how those tears ran down my face through pure fear, yet now I am standing here, walking without a single thought on how to breathe. thanks to my donors💕💕

-Posted using BlogPress from my iPad


  1. Very strong girl. My thoughts are with you.

  2. You're my inspiration! Keep a positive mindset!

  3. You stagger me Kirstie, you are very brave and resilient, I am keeping my fingers crossed that all will be well and we will soon be reading about a new adventure you are embarking on.I will be praying for that to happen. I wish you well in your new home.Kelvin. xx

  4. Kirstie,

    Congrats omn the home ownership to be and early Happy Birthday wishes! Love your positivity and hoping this setback is only temporary.

  5. Kirstie,

    I held my breath reading your latest post. You are so strong, I cannot believe how much you go through, and to think, my struggle with CF doesn't even compare to yours. You are such a fighter, god bless you. Congrats on being new Home Owners!!!

    Also, how old will you be turning??

    Lots of love! Cheers!

    Heather, CF since 1987

  6. your strength and willpower is truly amazing and u are a true fighter good luck with everything and enjoy what life has ahead for you
    Congrats on ur new home so happy for you both all the best :)

    Kirsty from Australia

  7. You're absolutely fantastic Kirsty, cannot express that enough. Your story above all else really made me start exploring the CF community more and looking after myself all the more, I will never be able to thank you enough for that, and the outlook and strength throughout everything you face, utterly amazing.

  8. Keep strong ,you are a person to do what you want.You are a fighter. Good luck

  9. Just seen your site after watching (probably a very old) Russell Howard's Good News show. You sound amazing and an inspiration to so many. I can't even begin to imagine how tough you've had it and how strong you must be to fight it so well.

    Take care and wishing you all the very best in the future to you and your family.


  10. I'm not really sure what to say, you're such a strong Person!! I feel so awful to take my own health for granted & to have abused myself for smoking for years (which I've finally given up).
    I wish u the very best for your future & congratulations on your new home. Keep making plans! Stuart is very lucky to have such a determined & positive partner :)
    All the best kirstie!! Take care of yourself. Charlotte,Newport x