Tuesday 25 September 2012

Kirstie's Big Breathe Bike ride

 (an article iv wrote for a magazine but didn't have a chance to writer a separate blog so hope you like it)

As I look behind me at the long line of cyclists, I’m ready to push off, this is no race. Were all hoping to just get there.

Iv done this trip before, many times, but the most memorable was when I was taken by air ambulance. I have cystic fibrosis, a genetic that affect all the main organs especially the lungs, just over a year ago from our starting point Exeter Hospital I was give a choice, with end stage cystic fibrosis and being on the lung transplant waiting list, I could stay in Exeter and spend the last few days of my life with my family and husband I had married only 2 weeks earlier, or I could be airlifted to Harefield hospital in London to undergo life support, I was also told that the likely hood of a donor becoming available in that time was very small. Looking to my mum I said, ‘we havn’t got much choice then’ within 30minutes I was in the air ambulance and being flown to Harefield.

Were off, cycling down the road, it feels amazing, the sun shining on me and I think of them, I say my thanks and smile to the sky. My donor is always with me, I think of them constantly and there family.

With us on the ride is Dave, his sister passed away at 23 and donated, knowing him, I know the pain that family have gone through, how hard donation can be but also extremely up lifting. I know my donor family are proud of what there loved one gave and I can’t help but feel grateful everyday.

I arrived at Harefield in the helicopter, everything was unknown, I didn’t know if I had come to die, or what being keep alive would be like, I had to false calls in the first 2 days, then my body decided to give up, it was time to go on a device called Ecmo, which takes over the work of your heart and lungs, but I was just to far gone, I had to be ventilated. I was in and out of a consciousness, mostly sedated so my body could rest. When I was a wake, the pain and discomfort I felt was unimaginable, I couldn’t speak due to the ventilator but I was trying to force the words from my body, trying to communicate, this was to much, switch it off. Ecmo is an amazing machine, it kept me alive but it was certainly the hardest thing Iv ever had to do.

Cycling up the black downs, now these are tough, some of the steepest hills you’ll ever cycle, I would do this every day for the rest of my life, Ecmo, I'm not sure I could do that all again.
On top of the clouds, K ing forget bolt & MO

5days on Ecmo, 5 days of torture, I was nearing the last few hours of my life, doctors worked frantically to get me into surgery, so I'm told, I was completely unconscious.

I woke up still ventilated through a trackiostomy and I didn’t believe I had, had a transplant, little did I know the journey was just beginning and my road to recovery would be hard. Learning to walk and talk, I knew what I had to do but my muscles had vanished and lifting my phone seemed the hardest thind to do, if I lifted my head from the pillow it would drop back down.

I was soon to be reminded, I had made a promise. If I got my transplant, a year later I would cycle with my cf consultant from Exeter to Harefield hospital 180 miles. He was a frequent cyclist and at the time I never thought id live to have to see it through.

Thoughts of dread filled my brain as I wondered how I would ever walk again, the anger at that stupid promise I had made, did they not know I was going to be in a wheel chair for the rest of my life. I was to weak surely to ever even dream of it? I thought they had wasted the lungs on someone who was going to die anyway.

As I open up my legs, changing gears as It gets easier, I'm moving my legs faster as I start to over take each of my group, I hate hills, but here, here on the flats, this is my time. I whizz past to make up my time lost, this is when I feel free, I open my lungs and take that long slow breath, Its so sweet and perfect.

Rehab in hospital was tough, I really never thought I would see the end, but then 4 ½ weeks after my transplant, 6 weeks in hospital, I had done it, I had learnt to walk again, I had done stairs,I still had a long way to rebuild my muscles and my new lungs but I would do my cycle!

And yes as I pulled through them gates on the last day, the crowd cheering me through, my consultant one side, my husband the other, my team of CF doctors and nurses, friends and family. We had done it. As I look back on this achievement, from Exeter to Harefield being transplanted and then again cycling the distance, each an achievement in its self, I find myself being more proud of the team of people surrounding me, I own these people my life, they did there up most to keep me alive, my medical staff and my family but now they join me on this next part of my adventure and go above and beyond the call of duty.


Don’t tell them yet but, I'm going to do it again next year ;-)

You can still sponsor us here http://uk.virginmoneygiving.com/team/kirstiesbigbreathbikeride

Will be blogging on my current situation soon