Kirstie Tancock: Love on the Transplant List
I always knew a transplant was a very real option for me, but I certainly didn't think I'd be 21 with the love of my life hoping and praying that someone out there would save my life, just so I could spend a little bit more time with him.
I was born with Cystic Fibrosis. I had always been very ill, but with the brilliant support of my family I had made the most out of my life and enjoyed every second. In and out of hospital I managed to pass my GCSEs, studied performing arts and arts management at Exeter College, qualified as a fitness pole dancing instructor and run a successful business. I also found Stuart. I was 19 when Stuart and I met in late 2008. We became good friends talking on Facebook and eventually he drew up the courage to ask me out on a date. I had been honest with him from the start. He knew all about CF and that it meant I would probably die at a young age. I don't think either of us thought I would be staring death in the face only two years down the line of being together. I introduced him to my daily regime of medicines, chest infections and constant hospital stays, but he was there with me the whole time. We moved in together six months after we became a couple and a year later he popped the question at our most favourite little place on Exeter quay.
But things were getting harder and I knew a transplant was looming on us fast. I started to use my wheelchair more and more, oxygen supplies were creeping in on my life but we continued to plan for our wedding in Cyprus. Then in December 2010 it was apparent our dream wedding was not going to happen, I was just too sick. I was on intravenous antibiotic constantly and I asked my doctor if now is the right time to get assessed for transplant. We talked about it on and off for a year at that point, but enough was enough. The business I had built up was diminishing as my health declined. My life had started to fall apart in front of my eyes. But Stu and I continued our plans, we were going to get married and it was going to be just as amazing.
I went for my assessment at Harefield Hospital in London and was instantly told I need to come back soon for a longer assessment and it was the right time for me.
On March 29, 2011 I found out I was on the list. I was in hospital at the time and that's where I stayed for further four weeks and things were going downhill fast. When I went home the oxygen stayed with me 24/7 and I had carers arranged to come in and help me do simple tasks like getting up and ready for the day, after which I would simply be knackered and retreat back to my bed. I had a stairlift fitted and what was once my pole room, became a dedicated treatment room, full of medicines and devices to help me breathe. Shortly after I started a Niv (non invasive ventilator) I knew we were running out of time, I simply did not think I'd make it.
This is what I wrote to Stu:
To My Dear Stuart,
As I sit here, I'm in hospital. It's the week before we go to Harefield for our three-day appointment. I say ours, because it will determine how our lives will be lived from now. We know my health is at a stage where I have a 50% chance of surviving. I'm writing this in case things didn't go to plan sweetie. I'm not here. This doesn't make me sad for me, I'm sad for you because I love you and worry how you will cope now. I'm not going to tell you how to grieve, this is your part to do. You can grieve for me as you like, I've got to say though I'm glad I'm not the one grieving. I couldn't cope if it were you leaving me. I hope in time it will become easier, that you will always have a place in your heart for me but maybe one day you will have a space for someone else too? I hope you are happy in life and that you live it to the full for me, take chances, risks, do all the things you thought you couldn't, go on holidays, spend time with friends and family. I know my Nan will probably look after Kia*, because of your work, but if that changes please look after our little girl. She loves her daddy and would love to live with you if she can. If not then make sure you still see her, she would be very sad if she thought you didn't love her anymore.
Just know I never wanted to leave you, I love you to the end of the earth, you have been my rock so far and I don't doubt you were right up until the end. I want you to know being with you has been the happiest days of my life, I wish we could have got to the other side of transplant and enjoyed that time together too but I'm just glad you were in my life for as long as you have been. I don't know if this letter helps in anyway.
Love now and forever,
It was the hardest letter I ever wrote.
We continued planning the wedding and I carried on raising awareness for Cystic Fibrosis and Live Life Then Give Life, an organ donation charity I'd become an ambassador for. I had watched many friends die with CF and now I was becoming one of them.
Me and my doctors talked about palliative care and how long we thought I had left. In March I was told six months. That six-month estimation just kept getting shorter, then three days before my wedding, I woke up struggling, I had my Niv and oxygen on, but I couldn't breathe. My carer rang my mum who rushed over. An ambulance was on the way, next thing I knew I was hysterical, pulling off my Niv. I turned blue. I thought if this was dying then It was far scarier and painful then I ever thought. My mum was screaming and my carers were on the phone to the ambulance. This was it. Rushed to hospital, we discussed new options for the wedding but I didn't want a different plan. I would go to my wedding, whether I was dying or not. Knowing Stuart had a DNR in his pocket the whole time, because if I was to collapse then I did not want to be ventilated as a transplant would have been ruled out.
I went for High Dependency Unit to Hornsbury Mill and married my husband Stuart, the best day of my life and what we all thought was going to be the last.
Two weeks later, I was given the option to go to Harefield and wait for a transplant there or stay in Exeter and die. I was air lifted away. The next two weeks were the worst for my family and Stuart. At one point when I was on ECMO (like a heart-lung machine) and ventilation. I tried to beg them to switch the machines off, but trapped, thought the silence of my tracky, no one understood. To me I was in agony, confused, in and out of sedation, I did not think my transplant would come and if it did surely it was too late, I was too weak.
When I woke to find out I'd had my transplant, I was upset, I thought they had wasted a pair of lungs on my fragile and dying body, I simply did not know how to keep fighting. But I did, I fought for my family, I fought for Stuart, I fought for my courageous donor, who had given me this opportunity. I didn't want to let them down.
I began rehab and over the space of four and a half weeks after my transplant, I was breathing on my own, walking again and climbing the stairs. I was alive and Stuart was there by my side pushing me the whole way.
For me my journey was one all the way to death's doors and all the way back to life. I didn't know if I'd make it, but I could never give up knowing I didn't try.
Nearly four months post transplant, what are Stu and I up to? Well, I have to say we're doing things we never thought I'd be able to do. We go rock climbing together, it's our new hobby, we go to the gym together, I go every other day - sometimes every day of the week. I'm enjoying getting my strength back and becoming stronger than I ever was. We're also training for a sponsored bike ride from Exeter Hospital to Harefield Hospital, with my mum and dedicated CF team at Exeter. I'm back on the pole, spinning and inverting and I'm also on my way back to teaching.
Whilst on ECMO and ventilation in ECMO, my mum said you know what to do if you want a kiss from Stu... pucker up. I was heavily sedated but I pursed my lips together and waited, I thought that was our last kiss, now we kiss every day and not one is taken for granted.
My main goal at the moment is to spread the word on organ donation. I'm just so lucky to be alive.
Watch Kirstie Tancock in Love on the Transplant List on Monday at 9pm.
- Live Life Then Give Life
- Cystic Fibrosis Trust
- Organ Donor Register
- Donor Family Network
- Transplant Support Network
- The Human Tissue Authority
- BBC News Health: Lung transplant 'gave me 20 more years with my husband'
- Read Love on the Transplant List producer Mel Beer's post on the TV Blog
- Watch clips from the programme
* Kia is Kirstie and Stuart's pet dog.