Monday, 6 May 2013

Mysterious lung function drop

I guess when you have a lot to say sometimes it can be harder to write it all down. That's where I am right now.

Since coming home from holiday I have been in harefield hospital for over a week. My lung function plummeted from approx 90% to just 47%. With a clear chest and no signs of infection I was bronched ASAP. The bronch came back clear and the hospital started there arsenal of tests. This including my reflux test which I have been waiting to re have. Fundo op It came back positive and now I'm waiting for the operation as an emergency. I have to say part of me still thinks something else is wrong, something's missing. Apparently I have had severe reflux since before transplant when I had my original test, now I know that I had it then, I used to vomit from it constantly and often if I laid down it would spray out my nose but I don't have these symptoms any more. I understand about this silent reflux, due to my nerves being cut at transplant I shouldn't feel it, but surely it should still make me vomit while it runs up my oesophagus, surely it would still run out my nose? And if it's always been bad then why has it done this damage to my lungs now over the space of a week or so while I was on holiday? I'm not saying I don't have reflux and there wrong, I'm sure I probably do but it just seems to not fit in together as it should and I feel that maybe there something else there missing?

So tomorrow I'm being re bronched, possibly looking for a missing link in the story or making sure no infection or rejection set into these now damaged and vulnerable areas of lung.

Will I recover? Well if this is all reflux, after the operation the question is will it all bounce back? Well it seems no one really knows, a small percent recover what they lost as it was only inflammation caused, not full blown lung damage, most, stabilise and the rest? Deteriorate. Iv been given a course of the lovely methyl prednisalone again (high dose steroid :-/) which stops inflammation and unfortunately my lung function didn't budge a smidgin. This makes me worry that my precious lungs are now damaged.

This drop in lung function has left me remarkable breathless and my exercise tolerance is restricted at walking and high levels of focusing on my breathing. At times I cannot walk and talk but others I seem to be ok. I have adjusted remarkably quickly to the change.

What now? Well I have the bronch tomorrow, I wait for this operation and Im working hard, Although it's tough, I have to walk, I have to exercise, iv got to keep moving. This is the only way I will recover quicker from the surgery and the only way to get my lungs stronger. I'm determined to get over this and determined to not let it get me down. My mind is clear and focused on one goal, getting home fit and healthy. Till then nothing else matters because it all becomes insignificant, if I don't recover and don't get better then I will start to lose everything again and that isn't a option.

I am up here without my hubby and without my mum but I'm lucky to have friends and family who have been amazing especially my step mum and dad so thank you to everyone who has expressed there love and support. My mum and stu have decided due to funds and work to come up when I need them most, at the operation. Until then I miss them like crazy and cherish the 6 hour+ journey stu did yesterday to be with me for 9 hours. Although watching him leave was extremely painful and sad.

So I think I will leave the blog there, I will be writing another blog soon on a special visitor I had, my idol. I will also keep everyone as updated as possible. Thank you.

- Posted using BlogPress from my iPad


  1. I am sure that the bronch will allow them to get more info about the drop in your LF hope it is okay.
    I feel for you:)
    I also am finding it hard to breath at times now I am hoping that the prednislone I am on will settle things, but like you am bit worried.
    Sending out all my best wishes to you, lets hope that we can both look back on this episode as a small blip!!

  2. Missy Sedam Roark6 May 2013 at 18:38

    Proud of your's one of a winner! Keep're my inspiration after my own transplant. I'll keep you in my prayers. Xxxooo

  3. So sad to hear your news. I will be thinking of you. I would normally urge you not to give up and keep strong but that would be superfluous in your case. I know that you will never give up and you are one of the strongest people that I have the privilage to know. So do what you do best and return to us in good nick, hugs, Kelvin

  4. Hi kirstie, i have been following ur blog since i watched the tv program late last year hear in australia. I really admire ur outlook on life, even when ur doing it tough. U r an inspiration 2 me and im sure thousands, millions of other ppl. Im sorry 2 hear about the lung function, but i know u will bounce back. I wanted u 2 know as well that i am now on the australia organ donor list, should anything ever happen 2 me, hopefully my organs will help improve someone elses life. Thankyou for encouraging me 2 live life every day and for appreciating what i have. Take care of urself, from hannah in sydney xx

  5. Hope you can keep strong. Wish you didn't have to say goodbye to him while feeling so yucky. Hoping they find the reason for the poor lung function and that it can be fixed asap.Hoping...

  6. After watching Love on the Transplant list, I constantly think of your story, especially on 'hard' days of mine. To read your hard days, I'm again reminded, of not only your amazing outlook and courage but to re-evaluate what I consider to be my difficult times. I don't know how to write this without it sounding horribly cheesy but you are a huge inspiration to myself. I'm sending such happy thoughts and wishes to you and hope that you get an outcome and some information to what's currently happening with your lungs :)

  7. Hugs for you my dear and wishing you the best. I know this is a struggle for you,Stu, and your mom but you are very strong and an inspiration in the truest form. Hopefully, you'll be back home soon. Anxious to hear about "your special idol visitor."

    Will be thinking of you.

  8. good luck ! my thumb is up for you !

  9. Wow such a huge thank you to you all! Just to say I'm also reminded of how lucky I am in here because there are ppl much worse than me and there strength inspires me without being to cheesy ;-) xx

  10. Good luck Kirstie, hope you feel better soon and that they can get to the bottom of things for you and put your mind at rest xxx

  11. Hi Kirstie,

    have sent you another email. Whatever luck and positive thoughts I can send are being sent :)

    Best Wishes as always

  12. Kirstie, I will be praying for a complete healing in your body. God is able. You are a remarkable beautiful and probably one of the strongest women out there! Xo

  13. Kirstie,

    sending you healing thoughts from California!


  14. I wish you all the health in the world. Have you ever thought of cutting gluten and dairy out of your diet. That really helped the reflux that I suffered from for years. I hope only the best for you and am sending you healing vibes!!! YOu are an incredible woman!