Thursday, 17 March 2011


Arriving at harefield on Sunday evening, Instantly I wanted to turn back, all iv been working up to came down to these 3 days. This team of experts would scan me, xray me, measure my lung function, my exercise tolerance, take vials and vials of blood, blood gases and decide if I could go on the lung transplant list. What if the said no? I know I'm ill enough, I know my life styles changed dramatically over the last 2year, but how would they understand the gravity of my life in these few days, how would they know that I need this operation, I need this chance.I know there the experts but sometimes even the experts make mistakes right? what if I'm the mistake, what if they decide I didn't or couldn't have new lungs.

All these feelings running through your brain, everything has arrived at this pinnacle point in time and the rest of my life would be decided in these few days. Suddenly I felt very unsure I wanted to know, I wasn't ready to know whether i would get this opportunity, or whether it would be ripped out of my hands.

I was taken to my room, down a dark and dingy corridor, it wasn't exert RD&E i knew and loved, the rooms were great at harefield, despite the dingy first impressions. They were big and had all the things you could thing you would need.  But still it wasn't my hospital, I'm so used to exeter, the staff, the rooms, how everything worked inside and out. My first impressions of the staff was probably the most unfortunate experience ever, I couldn't understand a word she said and she didn't even seem to understand what she was telling me 'u put the pee pee in the bottle' sorry what?? how can I pee in that big dish and then pour it into that bottle!!!!! ahhhhh confusion and panic straight away. My faith was restored as the staff handed over for the night shift and I was introduced to fiazel, he was there for ever night shift until I left and any questions I had were answered promptly and reassuringly. and also I didn't have to put the pee pee in the bottle, they would do that for me. Panic over, all i could thing was I was going to get pee everywhere. lol

The first night I had all my bloods done along with blood gases. I settled down for a rather restless night, I was scared and totally unsure. I carried on my 24 urine collection. The next day, felt like not alot was happening, I meet one of the tx nurses and she talked through the next couple of days, I saw the doc briefly and had lung function and walk test, my lung function was the best it had been, 32% unfortunately I know this will drop instantly once I come off my reserve drug and would hover around 20% until I continued to get iller and then would go below 20%. But having these sort of figures when your hoping to be given a life changing operation, was actually more unsettling then anything else and just replaced the worry of will they not realise how ill I am? The walk test was still rather tragic, I managed 170meters in 6minutes, with lots of coughing and breathless ness. Stu told me he could do that in 30 secs :-/ I hate to think how far I can manage when my lung function does start to dip.

The second day was go go go, CT scan, abdo scan, reflux test, for the reflux test I had a ng put down which measured my acid reflux over night, I had the tx nurse, doc and some other lady there for this, I asked can I put it down my self? they all looked at my funny, but once I explained I was use to passing them as I had done ng night feed and was probably better at it than them. They then continued to watch in disbelief and I was rewarded with a caramel bunny :-D I also met with the tx coordinator, where we discussed every possible out come, from start to finish. I signed all the paper work, this was the most encouraging bit for me. I mentioned my fears that the docs would not realise how ill I was, he reassured me that they look over everything, including how you feel your life is.

The final day, I was up bright and early I knew id be escaping asap. mum and stu arrived late to pick me up, but I'm so glad they did, Dr carby and his team came in to chat, up to this point i had no idea whether I would be put on the list and knew I wouldn't know for over a week. He came in and he asked me what I wanted and I said I want to be put on the list and i would be devastated if they said I couldn't and he said OK well lets plan to put you on the list a week Monday 28th of march after all the team have met with the surgeons and they have a oked everything. So this is where I am now, I'm hoping the surgeons for see no problems and if not my 2nd chance at life is a step closer, I will be on the list, from then? Its just a waiting game.


  1. You will be on that list by the end of this month. You will be given this amazing opportunity and I have no doubt that there are lots of people who have been talking about transplant and putting themselves on the donor register (I know of two who put themselves on the donor register after seeing your ITV piece). Hope you're doing ok now you are home.


  2. Well done u made it through after all the anxiety the hard bit is done... It's kinda out of ur hands now!!!! So u will b joining us in the waiting game.... Aaarrrghhhh how exiting and nerve wracking at the same time!!!
    Keep me posted, hope ur enjoying so well deserved rest in the sunshine!!!!
    Speak soon
    Emma & Millie

  3. dont you ever give up hun, you have come so far and im hoping and praying the very best for you. Just try and take every day (or even hour is what i do) and i do feel your anxieties but try and trust those who know best. Im sure you are in safe hands....your life is truly very precious :) stay strong and know you have so many ppl behind you supporting you through this xx

  4. Keeping everything crossed that you get on the list Kirstie. I thought your ITV piece was amazing, you are an inspiration x

  5. Willing with everything I have that you will be on that list. Thinking of you. x

  6. Hi Kirstie I was on culm ward last week saw you in side room 2. I just want to wish you all the best and my thoughts are with you. Take care xx