Saturday 19 November 2011

First Post

Hi there,

This is my first post, so I guess I should tell you a little bit about me and why I started this blog.  I'm 20 years old and have Cystic Fibrosis.  I moved out of home in September this year to live with my fiancee, Chris.  He used to be in the US Army as an Information Communication Specialist - he maintained all their networks and satellites.  He's been to Iraq twice, and on the second tour got a message from me on Facebook.  He visited for 2 weeks over Christmas 2009 and we've been a couple ever since.  I met all of his family in America in July 2010 and we got engaged.  Everything was perfect.

My health was declining but I was still able to do everything I wanted to just with a little breathlessness.  I was only on oxygen 2l overnight.  We travelled back and forth when we could.  I got to see California (his home town) and Texas (his base) and it was beautiful.  Winter 2010, my health had declined pretty badly and we both decided that I shouldn't fly anymore to America.  He came over for Christmas and I had a PEG feeding tube inserted in to my stomach.  I had one as a child, so knew it would do it's job!  My weight is now a lot more stable.  By this time, my lung function was hovering around 30% FEV1 (the amount of air you can blow out as fast as you can in one second).

I transferred hospitals from The Royal Brompton to The London Chest just because it was closer to home and to where we were planning to live.  My first admission was in February 2011 and I left at 26% FEV1.  Then the numbers just started going down and down each admission.  At my second admission, the CF team told me that I should get on the lung transplant list.  At the time, I wasn't surprised.  I was so breathless doing the simplest of things that I knew it had come to that point.  I completely felt like now was the time to do this and felt like the rest of me was strong enough to cope with this huge operation.

Three weeks ago, Chris had to call the ambulance.  I'd woken up and just couldn't catch my breath.  He rang mum and told her what was going on and rang the CF Nurse.  The ambulance crew brought all their equipment in - heart rate 180-220 at rest and o2 levels of 90% despite being on 3 litres of oxygen.  They gave me bronchodilators through a mask and more oxygen then wheeled me to the ambulance.  In the ambulance they hooked me up to a heart monitor as well and I sat forward because this is the only way I could breathe.  Chris hopped in one of the chairs and off we went.

10 minutes later and I was pushed in to Resuscitation unit in A & E.  Chris wasn't allowed in until they'd stabilised me and all I wanted was for him to be with me!  They stuck a canula in me, gave me fluids, IV paracetamol and started me on IV Colomycin and Meropenam - two antibiotics I'd had before.  Once stable, I was put in a side room on the respiratory ward for a few days until The London Chest had a bed.

Oh it was SUCH a relief to get to The London Chest.  Days of people not understanding my condition or what to do had worn me out.  I went straight on the NIV (Non-invasive ventilation) and fell asleep.  After a few days of intense physiotherapy and antibiotics, I started to improve.  I walked all the way down the corridor to another ward and back.  I felt like this would take a few weeks, but I'd be back home in no time.  The next day, that all changed.

I woke up again not able to breathe.  160 heart rate, temperature 39.  This worried my CF Team and they gave me any extra drugs they could think of to help.  Tamiflu, in case it was flu, extra antibiotics, in case there was some infection somewhere else in my body, antifungal, in case I was reacting to the fungus in my lungs, steroids to open up my airways.  Something worked.  A few days later and I was back on the mend, walking down that long corridor on oxygen.

Yesterday, I read a blog that inspired me to start mine.  You can read it here.
She's been through a lot and explains the medical stuff a lot better than I do!  I look forward to watching her documentary on BBC Three at 9pm on November 28th.

My transplant assessment is on 12th December 2011 so by the 14th, I should be on the list.  I hope that people read this and get themselves on the donor list.  It's the only statistic that scares me...only 50% of people on the list even get new lungs.  It shouldn't be that way, but it is.  Life is far from what Chris and I had planned.  Yes we're living together, but I can't wash myself or clean or cook like I want to for him and we hardly ever go out.  I'm so determined that I'll make it to transplant.
To sign up for organ donation, click here!


  1. Let's test the comments out. Great start to your blog Ais.

  2. Hi Aisling: Sorry to hear that you're having a difficult time with your health at the moment. We're thinking of you and hoping that your blog will educate us and help all of us that read it (and others we tell about it) to understand the importance of being an organ donor as we follow you through this journey. Hope you're feeling better and that you continue to keep your strength up. No doubt your fantastic attitude will help you to do so. Take care and we'll be watching out for your next post :-) Alisan