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Kirstie Tancock: Love on the Transplant List

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Kirstie Tancock Kirstie Tancock | 10:00 UK time, Thursday, 24 November 2011

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.

Kirstie Mills in Love on the Transplant List

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,
Kirstie

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.

Kirstie Mills

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.

Comments

  • Comment number 1.

    Amazing story! I wish you and Stuart the very best of luck :) xx

  • Comment number 2.

    Your honesty and transparency are inspirational, Michelle! Keep making the very most of life.

  • Comment number 3.

    I don't know you but so pleased you got your transplant - my partner has has renal failure for 10 years and been on renal dialysis for 2 years waiting a transplant so know how what your husband must have been going through - hope luck comes for my partner before it is too late and if this does anything I hope people register on the donor listing - take care and enjoy the rest of your life x

  • Comment number 4.

    Respect for your bravery and honesty, Kirstie. You may like to try Qigong or health-oriented Tai Chi Chuan, not to replace your other fitness work of course but as a supplement. Approaching the action of breathing from another direction. Under a good teacher (!), you can learn to move in a way that harmonizes the breathing with the body in quite a deep sense and this can strengthen the lung function significantly. It kind of works 'from the inside out'. There seem to be a few decent schools in Exeter.
    (I have no personal stake in any of these - I'm not even resident in the UK...)

    Anyway, good luck with everything !!!!!! :-)

  • Comment number 5.

    Bless you and keep up that amazing attitude. I was diagnosed at 17 with a very rare liver disease and lost both my liver and my kidneys when i was 24. 13 years later i am still here.

    Stu sounds amazing as well it takes a special person to support a person while they are on the transplant list.
    Hal

  • Comment number 6.

    Great documentary, alot of great awareness for CF.
    Having CF myself understand the daily regime and trying to keep positive is one of the hardest things, so hats of to you lass.
    Well done in fighting the fight and making it to your goal and i wish you all the best in your future.

    Craig from Leeds

  • Comment number 7.

    What a fantastic couple,I wish you both the very best for the future,and a long and happy life together,have a good one you deserve it.

  • Comment number 8.

    Hi Kirstie,

    just saw the programme and am so pleased for you to have your new lungs. I too have had a transplant - two heart transplants and both at Harefield Hospital. It is a great hospital and you will have great treatment and care from them post tx. I am 22 and have had my first transplant nearly 20 years and going strong.

    I hope you and Stu can now enjoy married life to the full. All the best xxxxxxx

  • Comment number 9.

    I just watched your amazing story I didnt think I could watch it all as was so hard. My daughter had cf and didnt make it to transplant and she died in my arms at 22. I am so happy for u stu and your wonderful family, dont waste a second live you life to the fullest.

  • Comment number 10.

    Just watched the programme; you two are absolutely inspiring! I'd like to thank you for three things, Kirstie:

    Firstly, for giving me a well-deserved kick up the backside and making me decide to go on the organ-donor register (how many of us would have no objection to being a donor, but have never gotten around to filling in the form?) . Dunno if my lungs would be of any any use to anyone after twenty years of smoking, but I at least know that my liver and kidneys are functioning properly.

    Secondly, for giving me a second kick and reminding me how much I should appreciate what I have in my my life, because none of us know when it might be over.

    And last and definitely least, for getting an introduction to Lykke Li's music (I googled the lyrics!).

    Thank you, and God bless you both.

  • Comment number 11.

    Hi Kirtie
    I have just watched your programe and i think you are most inspirational !
    I was in tears and when i saw you with your husband at the end it was just fantastic to see you looking so healthy
    Well done and congratulations on your marriage you truly both deserve a happy life !

  • Comment number 12.

    I just watched your amazing story I am so pleased you got your transplant and I will be registering to be a donor because of watching your story - Take care and I wish you and Stuart the very best of luck :)

  • Comment number 13.

    I am very sad and wish you the best of luck for the future and I cried all the way through that's how upsetting it was hope you got a good pair of lungs

  • Comment number 14.

    Kirstie, you're an inspiration. Our daughter Aisling, is 20, engaged and hoping to go for the 3-day assessment to get on the transplant list at Harefield in 2 weeks. I'm sure you and your husband don't want dark reminders but I took a leaf out of your book and set her up with a blog at http://blog.aisling.co The last 3 weeks have been a roller coaster - it would mean so much if you could post her a tiny word of encouragement

  • Comment number 15.

    Such an amazing story! Your positivity throughout was inspiring. I'll be following your blog and passing on the message about the importance of carrying donor cards. I wish you and Stuart every happiness, you deserve it! x

  • Comment number 16.

    A great and inspirational documentary that shows the positive results of organ donation. It changes lives and has given you and Stu the chance of a new life together, I hope it is a long and happy one and you can achieve all your dreams.

    I found it very hard to watch as it reminded me of how hard it was when I was waiting for my lung transplant.I am so glad that you filmed this story so people can understand more about Cystic Fibrosis and transplantation.

    I hope that many more people will join the donor register after seeing this emotional story and reduce the chances of people not surviving long enough to get their chance at a new life

  • Comment number 17.

    Kirstie and Stuart - what an incredible programme. Very difficult for me and my husband to watch. I have CF and my sister also had CF. She died, aged 28, because her call for her lung transplant never came. I'm so glad yours did - you so deserve it. Loved your attitude from the start - IVs and margarita simultaneously...my kind of girl! And Stuart is a wonderful man - just like my husband. Amazing how we find such good people isn't it? I'm 39 and still loving life and I hope you and Stuart have a long and happy life ahead of you now.

  • Comment number 18.

    you are truely amazing, makes my life seem so simple. stuart u r the most supportive and amazing peron ever, i literally am sitting here in complete ore of you both. wish u allthe best of luck...x

  • Comment number 19.

    Just watched it now.. Glued to the TV! SO HAPPY FOR YOU! x

  • Comment number 20.

    Kirstie and Stuart... I am literally over the moon for the both of you. I had tears in my eyes throughout that programme and was punching the air at the end. And I'm a 23 year old male who usually doesn't watch these kinds of programmes. You have raised so much crucial awareness and if anyone deserves life, it is most definitely you!

    As someone else has said, I am utterly in awe of you, Stuart and your whole amazing family. I wish you many happy years together and you've helped put a lot of things in perspective for me in my life! Best wishes.

  • Comment number 21.

    I'm on the "List"as well and have followed your blog before and after your transplant.The documentary was Brilliant.Allowed people to see the reality of living with end stage lung disease.The difference before and after was amazing.You and Stu were super.Hope this makes more sign up.Thought also for donor family.

  • Comment number 22.

    An utterly, utterly inspirational story! Makes me very proud to be even a very small cog in the Transport for Transplant system. My very best wishes to you and your husband/family for your continued recovery and health. Thoughts also with the courage of your donors family too...

  • Comment number 23.

    It is for people like you that I have carried an organ donor card in my wallet since I was 13. What a brave fighter you are! I wept watching your story and I hope that one day when the time comes I can help people as brave as you are. Can't tell you how happy I was that you pulled through! What an inspiration you are to live life to the full :o) x

  • Comment number 24.

    Great documentary ... if only there were more organ donors ... I have been signed up for years and have spoken to friends and family about my wishes, its something we should be more educated about

  • Comment number 25.

    Dear Kirstie I just watched on BBC 3 your ordeal, and it bought tears in to my eyes, you are very brave girl and your husband Stu is a great man I pray that you both have a very happy and very long life and that all you dreams come true Bless you both and your families

  • Comment number 26.

    I have to say that Myself I am a organ donor I just hope that when I die my all body is in good shape to help as many people as possible

  • Comment number 27.

    Kirstie words fail me......... I watched your programme and found it so moving. You deserve a healthy happy life with Stuart - you are a truly beautiful person inside and out. I wish you all the luck and good health that can be bestowed upon you throughout your life. You are amazing. xx take care lovely lady xx

  • Comment number 28.

    Kirstie, you are so positive and amazing!
    Well done with the documentary on BBC 3 , a great insight into how we all live day to day and the effect of transplants.
    I had a heart / lung transplant 16 years ago at Harefield.
    Still got a great pair of lungs, going strong and have a Cavalier King Charles Puppy called Roxy who keeps me fit !

  • Comment number 29.

    Kirstie I just watched the documentary and felt compelled to comment. Your story is so moving, probably more so because of who you are, beautiful, strong, positive and brave. You have so many good attributes and this is coming from someone who doesn't know you, I'm sure you have many proud family members and friends.
    I lost my sister to CF, we lost her just after her 1st birthday. It was back in the 70's when treatment was minimal and my poor Mum never got over it. I didn't understand the pain and agony everyone must of gone through because I was very young at the time but since becoming a mum myself I now realise how hard it must have been. Watching you suffer was very hard but seeing you recover filled me with so much positivity and admiration. I now see that there is real hope for sufferers of CF. Thank you for sharing your story and I wish you and Stu and all your family the very best.

  • Comment number 30.

    Wow Kirstie and Stuart wat an amazing story and wat an amazing girl u r Kirstie,watched ur documentary last nite and im not ashamed to say it reduced me to a tearful wreck,im 62yrs old and fortunately never had to endure any major illness but watching that programme last nite brought everything in this life into perspective,you are an inspiration to the people out there who suffer and im in awe of you,i wish yourself and Stuart (your rock) and all the rest of ur super family,every good wish for the future you are a star,regards Paul Hartill

  • Comment number 31.

    Hi Kirstie just seen the documentry,

    wow i cant believe how strong you were! from watching this and seeing what disappointment it brought everytime you didnt get the right match. I have joined the donor register. I think more people should become donors to help people like you.


    I wish you all the best in the future, your a great inspiration.

    Regards

    Dan

  • Comment number 32.

    You two are inspirational and demonstrate the true meaning of love- in sickness and in health.

  • Comment number 33.

    Kirstie

    What a wonderful documentary, I just saw the title of your documentary and thought it would not be interesting, in fact I thought it would be incredibly depressing. But I checked it out and I am happy I did, your bravery and positive attitude was and is quite marvellous and an example to all of us.

    I thought you were not going to make it when the first two Lungs were not a match and when you went on the machine to support you I was ready to just switch of the TV, so it was with great surprise and joy when the prefect match was found.

    I cannot imagine the joy and relief your Husband and Family must have experienced after your long period of illness and close call. Good luck to you, Stewart and your family for the future but with your attitude and family support I do not think you need luck.

    Clive

  • Comment number 34.

    What an inspirational and moving film!I too was in tears and found it one of the most moving documentaries I have seen in a long while, it really gave a proper insight into what you had to go through, and I'm so impressed by the strength shown of all affected. Definitely a lesson in how to make the most of life and reminder to make the most of what life gives you.

  • Comment number 35.

    Thank you everyone for your comments. I appreciate them and im encouraged by the amount of people who have decided to sign up. I would also just ask that everyone take a second to think of my donor and there family.

  • Comment number 36.

    I watched your documentary last night on the internet from Sweden. When I started watching I didn't know if you were going to make it. I thought you were dead when Stuart kissed you just before they took you to the theater for the transplant and it was heartbreaking. Oh my God I was so relieved and happy for you, Stuart and your familly that I cried (again) when I found out you got the transplant.

    You are truly an amazing person and seeing you and what the transplant mean to you and everyone around you made me register as a donor today.

    Thank you Kirstie! I hope some day if I pass away earlier than expected that I can help another person in the way that you were helped.

    I wish you all the best and a long and happy life with you wonderful husband

  • Comment number 37.

    Watching your documentary was so hard; in 2010, someone I really cared about - someone who was much like you seem to be Kirstie: beautiful, spirited, strong in the face of adversity, caring... I could go on with the positive stuff - died waiting for re-transplant after suffering chronic rejection with the lungs she'd received because of CF. So much of what was shown of your life in this reminded me of the documentary made of her life with CF, and the little clips she'd post on her blog.

    While things didn't work out for her, I'm thankful every day for the extra time on this earth she got because of the generosity of someone who signed up to be a donor, someone who did not know her and would never get to. I'm thankful for that person's family, who in a time of great pain made the choice to save the lives of others. Without the donor and their family, I would never have gotten to know her at all.

    I'm really glad that you agreed to make this documentary because I think people need to really see what life is like for people waiting for transplant - sometimes waiting for a day that will never come. They need to see what a transplant can mean to the life of the recipient, how it can literally set a person free and allow them to do things they couldn't before, because of symptoms, the need for oxygen or dialysis, constant hospital admissions...

    One of the things the person I spoke about wanted more than anything was for those who knew her to be her legacy - continuing to raise awareness of CF and money for CF research, and to continue to raise awareness of the importance of organ donation. Watching your documentary reminded me exactly why I signed up to be a donor, and why I promised her I'd do those things, and made me feel that I need to do more than just promote organ donation online.

    I wish both you and Stuart the best for a happy life together. Thank you for sharing your story.

    And to the donor's family, in case you read this, my deepest sympathies and condolences for your lost. And while this is truly inadequate for the gift you gave Kirstie, and perhaps many other people... thank you.

 

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