Friday, 5 July 2013

Lung collapsed, chronic rejection, radiation therapy

I haven't done a blog recently as a lot has been going on, so much that I wanted to wait until I had some answers. I still haven't got all the answers, well definite ones. So here it is.

Ever since my fundoplication, my lung function continued to drop and I felt more and more breathless, have more time off work and generally struggling.

I decided to get a check up at harefield and st Mary's as I was having problems with eating to.

My st Mary went ok.

Unfortunately, harefield didn't. Very out of breath in clinic and a lung function then of only 36% I was in for a bronch next day.

The bronch didn't go well, I woke up In incredible amounts of pain on high litres of oxygen and gasping for breath.

It wasn't until later that afternoon when I was sent for X-ray did we find out why, the nurse came in and announced the surgeon was here to fit a chest drain, I said what? And that was how I was told they had collapsed my lung. This is a small possibility during bronchoscopy when they take a biopsy and due to my continuing decline they decided it was appropriate to take a large biopsy.

The surgeon came in and described he would fit a drain and that should instantly make me feel better.

It was one of the most horrific sounding things iv ever had done, there was no pain, the surgeon made sure of that. But the sounds we horrific, the pushing pulling and general discomfort and feelings of suffocation were horrible. But I didn't cry once, I stared my dad in the face as he held my hand and stayed strong. I didn't want to upset him.

Since then my drain has been removed as my lung had come up, unfortunately not all the way and the bronch didn't come up with any conclusive results. Also the collapse gave me a nasty chest infection making me much worse.

So at the moment, I'm stuck on oxygen, very breathless when I walk and struggling to do stairs and exercise but preserving as its will help my lung come up.

So we get back to what's wrong with my lungs in the first place, well, it looks like I have chronic rejection although its not full confirmed, but I am starting radiation therapy and hopefully this will get me back to pre fundoplication lung function of about 45-50% if not it will stabilises me and we will have to look at my options from there. I'm also in talks with the surgeons about have my lung surgically restuck, but hopeful it will come up on its own.

So things have been really tough and how I feel about it all? Well I'm obviously very upset, I'm upset things have got this bad so quickly and I'm back to a very scary place of limbo, not knowing what the future will be. Can I say that you ever truly leave that place, where you think maybe you can see a future, that you can stop worrying that death is waiting around every corner, I think I was there. Either way, I'm loving, living and still breathing and that's what's important and I thank my donor every day for that gift.

Also here's a link from the week before I came in, of me on daybreak for cf week promoting organ donation and raising awareness of cf. Im very proud of this as I was extremely breathless and still managed to reliever my message, which is transplant saves lives and is a huge gift that I am forever grateful for.

- Posted using BlogPress from my iPad


  1. so sorry to heat this hun, I hope things start to improve for you xx

  2. You are wonderful Kirstie, I wish that there was something I could do to take the stress and fear away.I will be praying that you improve rapidly and you come out with all guns blazing. You are my inspiration as well as thousands of others,you are a very strong lady but even strong people can cry and ask for a cuddle. God Bless you Kirstie.

  3. Kirstie, your positive attitude is amazing. You are such a brave young woman. Praying for you. You are making your family, friends and organ donor so so so proud. Much love...

  4. So sorry Kirstie keep a positive attitude or try, I follow you on Facebook and all of your Family are amazing especially your Husband I watched your lung transplant on TV. You are so strong try and stay positive. Loads of love and prayers from Australia.

  5. Lois-Jane Mum to cfer6 July 2013 at 00:49

    keep fighting Kirstie - really admire your 'can do' attitude - never the victim altho from watching my daughter with her cf i also know this can be a face you show to the outside world when inside you are crumbling... just remember it is ok to show that side as well sometimes... big gentle hugs xoxo

  6. Hi kirstie, you are so very brave! I never new what cf was until i just seen your tlc story. My name is amber, i live in u.s.a,
    I hope that things start to look up:) You are an absolute amazing person with your courage and strength!
    love, amber

  7. Thinking of you. I have a friend with CF and double lung transplant so I started following your blog. I pray that your lung function improves and the rejection can be handled. You do have an amazing attitude. Thank you for sharing the need for organ donation and your thankfulness to your donor and family! Hugs.

  8. I hope you get better soon and they find out that it's not chronic rejection. It's really not far, you're far too young to have to keep going through all this. Best wishes, i'll be keeping my finger crossed for you.