Thursday, 1 September 2011

Transplant blog

Well I know its been a long time since I have blogged, but the words don't seem to come easily. Come around from a haze to be told I'd had a lung transplant and all my dreams had been answered wasn't as uplifting as you'd think, I had been through hell and back on ecmo in and out of sedation, ventilated and had a tracky fitted. I had come to peace with the idea of dying and I had prepared myself because transplant didn't seem realistic anymore. I was dying.
Ventilated through my mouth and on ecmo

Still on ecmo but ventilated through tracki. the red tube (blood) is the ecmo which went into my neck on the other side

I had 2 false alarms. Then on the 10/7 completely sedated with my family had preparing for the worse. I had hours left. Then everything changed, there were a set of lungs available Sunday night. My family waited for test after test to come back and right up until I was taken down no one knew If they were going to take the chance on my frail and dying body. 11/7 I received the gift of life.

Waking up confused, in pain and suffering from post traumatic stress from hallucinations and vague memories of my time on ecmo. The idea that id had a transplant confused and scared me. Why was I still being ventilated through my tracky? Why was I in so much pain? Why did I feel so ill and tired? I was scared. It took alot of people telling me I had new lungs for me to believe it. But still I felt so despondent and lost, fear had engulfed me and I still felt like death was lurking around. I didn't know how to get through this, how to build my strength, I was unable to tell everyone how scared I was as the tracky prevented me from talking. I was overwhelmed with the sense of guilt for my donor. I knew before transplant what organ donation ment and the idea was easier to deal with then, I had logic on my side. Someone had already been determined brain dead and there organs were there to save others because that's what they had wanted. But after my transplant logic was lost and all I felt was a deep grief for this brave person who had saved my life and I didn't feel worthy.

I had been ready to die, I had accepted that death was coming, I had even tried to communicate on ecmo that I'd had enough. I never wanted to die, I just didn't know how to do it anymore, I was suffering and I didn't like it. So having a transplant felt like maybe someone else deserved it more because I was so weak and so tired and I had given up for those brief moments. What kept me going? Stuart, My Mum and a visitor I had one day, I saw her in the corner of my eye, standing there, I tired to point her out to my mum and Stu and said 'whos that' there was no one there in there eyes, but the was to me, I don't think it was a hallucination, I think it was my angel Debbie and she was obviously willing me on, telling me to carry on fighting that little longer. Debbie was a CF friend of mine who died at the very young age of 16 after an unsuccessful transplant, I was only 10 at the time, I looked up to her, she was an inspiration.

In ICU after the transplant I struggled to grasp reality. What was real? The terrify things I remembered where they true or some terrifying hallucination. The reality and the hallucination, both were as terrifying as each other and they stopped me from sleeping, I begged to be sadated again just so I could rest.

The next thing the physios were at my door, already wanting me to start my rehab, the thought terrified me, my body felt like a dead weight, like nothing wanted to move and I didn't even have the strength to undo envelopes. What were they going to try and make me do. Sit on the edge of the bed. It sounds simple, but I was found it hard lifting my head how was i going to maintain holding my body up. I had two chest drains in, wires attached, tubes everywhere. this was going to be hard. I reluctantly agreed. they sat me up using the bed, moved drains and wires, slowly the moved me into position, I had to start using my stomach muscles to hold myself up as I Slumped forward. I started to nose dive off the bed, but I was pulled back by the physio behind me and pushed upright by the one in front. We tried again. My sats were still good, but I felt so breathless, I was working my new lungs. I think I was on just high flow at this time as they had weened me off the ventilator, on to cpap then high flow. So we tried again, I straightened up hand down on the bed and I held myself, with little to no support. I didn't feel that happy about it though, now I see it was such a big mile stone, but then it was just baby steps and I knew it would continue being baby steps for a long time.

I had restricted my visiting, I had been so overwhelmed the first day, all I wanted was my mum, I even stopped Stu coming up one day as I couldn't face him, I felt like such a disappointment, I should be happy, I should be pushing myself, but no all I wanted was to rest. I was suffering from being in icu, I had post traumatic stress and I was on diazepam for my anxiety and citilopram an anti depressant. I never thought I would need anti depressants but the trauma had truly shaken me. I felt fragmented and couldn't make sense of things. I finally had a voiceinator put on to my tracky once I was just using my nasal specs with very little oxygen. I talked a little, but then felt to tired to continue communicating, it was really hard just to get the words out. Eventually I talked more and more, but my silence was also because of my depression and despondency. I started to wade through my thought and fears, asking about my time on ecmo.

I had a few more visitors but kept it to my Mum in the morning, Stu in the afternoon and My dad and Step Mum in the Evening. I was still in and out of sleep, tired by doing simple things. I was hungry and I wanted to eat, I'd watch food adverts longingly. We started to introduce water, I tried a sip whilst sat on the edge of the bed, It was ok, It went down the right whole, but my tracky made me feel uneasy and after every time I drank I felt like I had to be suctioned through my tracky, I was worried It was going into my lungs, It wasn't, but I was still very confused.

I started drinking squash, then eating ice lollies. Slowly I was persuaded to try yogurt and soup. Then more solid but still mushy food.

I also stood and marched, I used a zimmer frame, then I was sitting out of the bed, they were all still baby steps, which left me knackered. I needed help to stand and supporting the whole time.

Rehab, i had to learn to feed myself, sit up,
use my arms and legs, walk with the zimmer

They had me on the bike quickly but this smile was a little bit forced,
I hated it.

yes very exhausting, 1minute in with no Resistance, i was very weak. Some of my fav people here. I didn't like my physio to begin with but i wouldn't be anywhere with out her, fantastic nurse as well. helped me through things emotionally as she had had a brain tumour and knew some of what i was dealing with.

My mood was picking up for short periods of time. But I had a catheter and what I describe as a poo bag, these made me very uncomfortable. I developed C diff from the amount of antibiotics I was on. My stomach swelled till I looked 12 months pregnant, if there was such a thing. It was very painful. Making me more uncomfortable.

A week and a half post transplant I was moved to E ward and it was like a weight had been lifted, my tracky was removed, my lungs were cleared a few times by bronch and my breathing was getting easier. The nasal specs were taken away from me and I was breathing on my own with sats of 98-100 something I had never known! I started a slow walk up the corridor and just kept going till the end slow and steady and with my zimmer frame. My catheter and poo bag gone, but the two chest drains stayed with me. I then went outside for the first time in weeks and weeks.


Feeding myself



I then started to move around my room, with out the zimmer until I just decided actually I don't think I need it. walking anywhere got me very tired but once I was rid of the zimmer frame I felt like I was gaining far more energy. Then I decided it was time for stairs 2 days earlier then I was suppose to. Me and Stu went and tackled the stairs.

It took alot for me to get rid of my depression but having a shower and knowing I was going to be out of hosp really lifted me, having my chest drains taken out after 4 and half weeks was amazing, the day before I was suppose to go home, the shower the next morning the first in 6 weeks. I was on cloud nine.

But that day I had a blip about a liter of fluid was sitting between the lung cavity and squashing my right lung. I was devastated. I would have to have another chest drain put in under local no sedation and it was going to hurt, i was shaken like a leaf as they inserted the tiniest pigtail drain, but right into my back. Sleep that night was horrible, I was in agony and unimpressed.

The next day I waited, trying not to get excited, finally I was allowed home. Amazing!!

Stuart drove me out of the hospital, with the documentary team filming. I stayed at my dad for 2weeks with appointments at harefield twice a week.I walked everywhere, building up my muscles, shopping, cinema, seeing family who live in London. It Felt amazing, my breathing just got better and better, the more I walked the better I felt. The aches of rebuilding my muscles killed but I had to push on. The first few week were important I knew that. My reluctance of the first few week was gone and now I was ready, ready to re engage in life, plan what I wanted to do next and think about my list of things to do.

Im now home home, back with my kia and i haven't stopped all week, I even went canoeing. I can't wait to go swimming and start building up my for my charity cycle ride, which I think will be in september next year. From exeter to harefield over 3 days.
Finally to some up the big update, I'm so happy to receive this gift of life, I can never explain how amazing it is each day. It was hard to begin with, but when you get to where I am today you know you'd do it all again if you had to just to get this ounce of freedom, sense of life, I'm so happy happy happy.

Me canoeing with friends and kia.


  1. Fantastic! Keep going! So, so happy for you!

    Alison xxx

    (1st comment again - spooky!)

  2. what an amazing blog! you have came so far and you should be sooo proud of yourself! i wish you the best of luck in all your happy adventures for the future xxxxxxx

  3. Wow Kirstie this is some amazing journey, we've followed everything from before 11 July to now, and only wish you, Stu and your family all the happiness and health possible for the future. Much Love Lin, Dave, Natalie & Stuart xxxxx

  4. Fanbloodytastic.... Just love the brutal honesty. You have done and are doing amazing. Those first few days/weeks/months are the toughest. If more people don't sign up to the organ donor register once touched by your real life story, then I don't know what would do it.

    Keep up the good work Kirstie and enjoy the precious years ahead, so much exciting stuff to look forward to.

    Sue xx

  5. Truly Beautiful Young Lady, a inspiration to many. Now go out there and experience life. Live, love and laugh lots. I can't wait to read about your adventures and married life with Stu x

  6. :D You are amazing! What more can I say?!

    I found being sedated/venilated in ICU one of the most traumatic times I've ever been through, it took a while to get over what had happened. Look how far you've come already, you were a star before you had these new lovely lungs, just think how much you and your life is going to shine now you've got them!!!

    Much love huni, Dawn xx

  7. You are so so so amazing.
    I'm in such awe of what you have gone through, I cant even imagine.
    So proud of you! so glad you've had such success.
    Its such an inspiration that you went from where you were to where you are now!
    sending love and strength!!
    (Kate Bush)

  8. Was wondering how you were getting on. Great blog,ever thought of being a writer ? So very very pleased for you x

  9. You look fabulous! I'm so glad you're happy!

  10. What an inspiration you are, this is an amazing blog and makes me feel that there is always hope.
    May you & Stuart have a very happy life together.

    Laura mum to bethie 12wcf xx

  11. Brilliantly written Kirstie, thank you for sharing your feelings and emotions with us. I am so happy for you! Lots of love - Rose XxX

  12. Your such an inspiration to everyone out there, I have followed your blog for quite a while now, it's absolutely amazing to see you look to happy and well.
    I hope you and your stu continue to have a happy life together. xxxx

  13. I've been reading your blog the whole way through and I'm so so pleased and happy for you that you have come through all that you have. I work in an operating theatre that undertakes both heart and lung transplants (not harefield!) and always wonder how these people get on with their lives post op and its been truely great to see you despite your struggles come through it. From working in the area I know how serious being on something like ECMO is and I have to say I was shocked, yet very happy, to see that you had made it through transplant. I wish you all the happiness that you feel right now to continue right into the future (you deserve it) and look forward to reading about it :)


  14. Best blog I have ever read, so extremely happy for you and it's such good information for people that may be waiting for a transplant and even people that aren't but always wonder what if, and how? You've done so amazing and the transformation in the pics are great! Fantastic!!!!!

  15. I have been following your story for some time now. I just wanted to say thank you for sharing your story. You are an inspiration for many. I cannot even begin to imagine what you have been through, but am so happy to read how well you are recovering now.

  16. Tears of joy, hope and inspiration reading your blog dear Kirsty......Your courage and strength will give so many people hope for their futures. I cannot praise you enough. Someone is out there watching over you. Never feel alone. xxxxxxxxxxxxx

  17. I second what Anonymous said on 1/9/11 @ 15:26 Truly amazing young lady, I wish you all you wish for yourself and may you guardian angel continue to be at your

  18. Well done. Really happy for you. Amazing story of courage and strength! Xxxx

  19. you are a very amazing girl i know u dont know me but i am friends with your sister and ihave followed u all the way like i said u are just one amazing girl hope its all good from now xxxxx

  20. What a beautiful post, because of its honesty. It is lovely to see an update from you-I know the road you will still be taking may be rocky-but I'm hoping that you have been through the darkest times for a while, maybe now you and stu can look towards a belated honeymoon or something as exciting X

  21. Wow what an amazing jouney, glad that you are finding the strength to push yourself. Can't wait to see you tick off your " New lung tasks" and add to them, may you remain strong and healthy, much love XX

  22. Thank you for writing this post. It is brilliantly expressed and your honesty makes it very powerful. Not enough people are prepared to talk about how they can feel depressed after something which appears to outsiders to be purely "good" has happened: by describing what you had to cope with, you will have helped a lot of people.
    Good luck - and be kind to yourself. You are honouring your donor just by doing the best you can. You don't have to feel happy every day (although I hope you do, obviously).


  23. Been following this blog with tears and smiles, hoping beyond hope it could work out. You have always been an exceptional person - stubborn enough to grab your second chance and make a wonderful new life.Love to you, to Stu and to your mum xx

  24. I'm so happy for you! You're so brave. You definatley deserve those lungs xx

  25. This is an inspiring story, you are so brave and so strong. Good luck to you and I hope you have a happy future, because you deserve it. Thanks for sharing your story, and I look forward to your updates.

  26. Well done Kirsty. It is an emotional rollercoaster, just let the feelings roll around, they will settle in their own way. ICU is a horrible place and leaves a lot of people unsettled.

    I trained as a nurse and also spent a couple of months at home with a trachy recently. So if you ever have any question or wonderings feel free to message me. But yeah, eating with them is pretty awkward at first.

    Well done. Glad to see you kicking ass.

  27. so proud of you,all my love

  28. Well done Kirstie. I AM REALLY PLEASED FOR YOU. With love and best wishes for your future.
    Rachel xxx

  29. Hi Kirstie,

    I know you do not know me, but my name is Shaun I am about to marry TIllie whom has known you for some time now and had put itv in contact with you.

    I just wanted to say I have been reading your blog and it is a very emotional read, as a young teenager I had a horrid bowel disease and went through lots of surgery, so can relate to your depressed moments and rehabilitation struggles to some extent, I too had moments where I just wanted to give in to it all.

    Ever since going through lots of surgery I had always wanted not to become a donor, I felt messed around with enough, i now work as an anaesthetic practitioner and also see the dramatic events that take place on both sides of donation, this too has made me very withdrawn from the idea.

    However since reading about you and hearing many things from tiilie, I have had a massive change of heart and will definitely be making sure that any good part of me that may be left will go to good use.

    You are an extremely brave young lady Kirstie, keep positive and it is a pleasure to read about your progress and recovery, so thank you and all the best for the future.

    Shaun mabbutt

  30. Kirstie, I've followed your blog from the start. I just wanted to say how happy I am that you got your transplant! You give me hope as I am a fellow cf sufferer and you are my inspiration. I hope you live a long and happy life with your husband Stuart and your family. Take care and live your life to the max!!

  31. well done!! canoeing already?!?! amazing!!! xx

  32. An absolutely amazing read from start to finish. Having known you for many years I've watched you grow into a beautiful and corageous young lady. You have fought so hard to get where you are today and I know you will pay tribute to your donor everyday by living a fabulous life and continuing your work to spread the word about organ donation.

    Words cannot express how proud/happy etc we all are. You, Stu, your family and Kia have waited so patiently for this gift, you go and enjoy every minute because you truly do deserve this 2nd chance!!

    Much love

  33. Great to hear the whole story in your own words, I was glad that you got your transplant when you did I was very worried about you. So happy to hear that you have been able to get out and about canoeing!
    I have just come back from my first Holiday at the sea since my transplant it was so nice to breath the sea air with new lungs.
    I look forward to hearing how things progress, now you can make plans that you only dreamed about before:)
    All the best to you,Stuart & all your family
    Mark (

  34. Hi Kirstie, You don't know me, but I have followed your story and was waiting for your update to see how you were getting on. It is so great to see the photos of you out and about and enjoying yourself, you deserve it. Good luck with everything and keep enjoying it, your honest blog has made me sign the register and I am spreading the word about how important it is. xxxx

  35. Hi Kirstie, Well done Hunny, this blog is amazing, it shows the ups and downs that receivers go through. My son received a liver when he was 5 years old and he is doingvery well, just so pleased for The gift of life, you and My son received xxxxx

  36. Hey Kristy,
    All I can say is wow! God is good. I've been foliwing you for a couple months no here on the other side of the pond, and I've been so impressed. Your husband is so amazing!! You were really lucky to find him. As a teen strugling with a hard to control asthma, you've kept things in perspective. You are an insperation. Let is know how things keep going with you, please!!!

  37. I have just watched the news and seen the report about you, I can't believe how strong you've been through everything.You are such an inspiration to everyone. I would just like to wish you all the health and happiness for the future, good luck.

  38. I cried reading this, I am just so happy for you xxx

  39. when you didn't post a blog for such a long time after your operation i dreaded the worst so i was very relieved and grateful to read your latest blog to hear that you have pulled through. Please keep writing your blog from time to time when you can as you inspire a lot of people! :)

  40. what an amazing woman you are. You have been through so much but now hopefully you can start living properly. You look amazing. Very good account of your time. Thank you for sharing it with everyone. We know how hard it's been, but so worth it. Well done. Enjoy married life now xxx

  41. Tony and Julie Carter8 September 2011 at 10:13

    You are an amasing young lady, we are so pleased to see you looking so well after everything you have been through. Go enjoy your life and do all the things you have been unable to do for so long. Well done xxxx

  42. Wonderful news. All the best to you xx

  43. I signed the donor register because of this blog. When I first read it, the sheer bravery and courage you showed, and the overwhelming sense of unfairness of the whole situation moved me to tears, and this one post did it again. I am so unbelievably happy for you, and I don't even know you. I wish you the happiest life anyone could have, cos you deserve it.

  44. My daughter also had a double lung transplant in January this year. Reading your blog is amazing not only because of your triumph over such a traumatic time but your words echo exactly how Sarah was feeling too. She takes great cpmfort in knowing she isnt alone in there feelings. I wish you a wonderful life Kirsty. How you have earned it XXX

  45. Dear Kirsty,

    My name is Kim Dingle- you don't know me and I hope you don't mind me reading your blog- what an amazing story you have!

    I just this morning came back from Harefiled Hospital after visiting my sister Kerry and I can't believe quite how similar your tale seems to be!
    Kerry has had a very traumatic couple of weeks and after a respiratory arrest she was also put on the ventilator and also the ecmo machine. She had been on the ecmo for 5 days and was still not able to come off the ventilator and we all knew she had no other options, we were even told on Tuesday that they weren’t sure if lungs came up whether they could operate on her! On Wednesday Kerry was given the amazing gift of lungs and the incredible life saving operation and against the odds survived the surgery! We are all over the moon (however keep being told that she still has a long way to go). Seeing her yesterday for the first time was amazing. She is still sleeping a lot of the time however when we said her name she gave us eye contact and we keep talking to her, trying to reassure her, telling her how brave she has been and telling her she has had the transplant. Yesterday evening I was in ICU visiting her and we had communication- she was mouthing the word drink to me (she also cannot speak due to the tracheoscomy). She was nodding to questions and also asked me where mum and her husband were. Although it was lovely to communicate with her and very special after she has been deeply unconscious for over a week, it was so hard to know what would help her in the situation. I can’t even for a second begin to understand how she is feeling or what she has been through. Reading your blog has given me so much reassurance and a bit more understanding of maybe how she is feeling. Seeing your photos from ICU is almost symmetrical to how Kerry looks now (again I hope you don’t mind that I saw these).
    Kerry also has a blog which I have been updating for her ( - just to give you a background if you are interested, however please don’t feel like you need to read it!) I want to help Kerry as much as I possibly can in anyway that I can, however I really just don’t know where to start or what’s helpful or unhelpful. If you have any advice that you wouldn’t mind sharing it would be lovely, however please do not feel obliged if you would rather not. I know it must be such a personal journey and one that no other person could understand. It’s so great to see how well you have done and very reassuring/inspirational for others going through the same thing.
    With greatest admiration

  46. Hi kim,

    Cant seem to reply out of my account but heres my email plz email me and we can chat

    Kirstie Tancock

  47. well well well. it is not often that this 6 foot tall, 17 stone lump of mancunian hardness gets moved, but you have me blubbing like a baby here. what a remarkable story and an even more remarkable lady. never again will i sit around moping because i have nothing to do, or because i am skint and cant go for a pint with the lads. never again will i take my life for granted. you are one of the most incredible young people i have never met. and you and your story has just given me inspiration and the kick up the arse that i needed. i can not even begin to imagine what you and your family have been through, but to see you come out of it smiling (which you seem to have amazingly done throughout) is testament to your incredible courage. god bless you kirstie. and may the rest of your life be a fit, happy and healthy one. because if anyone deserves that, its you... :) xxx

    mal, stockport.

  48. Hi Kim,

    Mal's comment on Dec 20th says it all: you are such an absolutely amazing person. We have a C.F. patient in our family who also got a lung transplant just in the nick of time, a year or two ago, so we can relate perfectly to your story. He too made an exceptional recovery: he was on the phone with his wife the day he woke from the op, can you believe it? That shows how strong and determined he also was. But yet, like I said before: YOU are something else still! When we were watching your story on the telly last week, until the actual transplant I kept on believing it was just a daramtised documentary in which you were an actor, it is just unreal how well you carry your burdon.

    And may I add that I'm so happy for you that you live in Honiton. We visited this town during a UK holiday, and it is such a nice and friendly and cosy town indeed. Just enjoy living there!

    And as for Mal: well he put it all so well, in so few words, it makes all other entries in this blog - including my own - unnecessary. You Brits may be a weird lot at times (don't get this wrong, though, we did choose the UK for our honeymoon, y'know!), but there's one thing in which you'll never be beaten, and that's in telling a story, be it in writing or in a movie. So next time you have nothing to do, Mal: go write a book or make a movie. You can do it!

    Bye for now,
    Y.K., Belgium.

  49. PS: forgot to mention, I was going to but ultimately forgot to put it in my original message (well we, healthy people, do have so much on our busy minds, like walking the dog, surf the 'Net, inform the missus that we are now ready to receive our evening meal, ...): an evenly big accolade is due to Stuart for sticking to your side the way he did, and will do in the future. Of course, he would have been raving mad to let go of a personality like you. But many less focused blokes might have given up in favour of a quest for an easier life. Way to go, Stuart!

    Y.K., Belgium.

    1. CORRECTION: in my first message pls. read "Dear Kirstie" insead of "Dear Kim"; just a silly typo, sorry!!!


  50. Keep up the great work!

  51. Hi Kirstie,

    Wow is the first word that comes to mind, I'm not normally one for tears but I had to stop and wipe my face more than once reading this. I've heard a couple of other transplant stories in the past but never one with so much honesty and detail. I want to thank you for sharing it with everyone because reading it showed me what you went through.

    I'll be needing a tx myself and I have to admit the only thing that scares me more than waking up after it is picturing the people I love at my funeral. No much of a choice but I know which I'd choose, that's not to say I wont be greatful to the donor (If I do get lungs) but I never wanted this because it makes me feel like a vulcher (Like I'm waiting for someone to die) and then there's if I deserve it.

    For a long time I've wondered if these feelings are normal and wondered if I'd be able to cope when the time came but you've showed me it can be done and is more than worth it. You have your life back and I'm so so happy for you and your family I wish you all every happiness. You all deserve it you realy are inspiring.

    Louise. Xxx

    1. Thank you. The thing to remember is your not waiting for someone to die. You're waiting for someone who has already died but took the time to sign the register and decide that they would like to save someone else's life. That's important to rememeber. My donor didn't die for me, it was tragic curcumstance, but with there loved ones courage and there's they decided to do something amazing.

      Also when you think about needing a transplant there are many outcomes, what's the worst thing that will happen if you don't have one? It's the same thing that will happen if you do but it went wrong? Sorry if that sounds blunt I don't mean it to be. I never wanted a transplant either, you can read that blog to that mit make the decision a little clearer. Also everyone deserves the chance at life, I often wonder if I deserved this gift, but I make the most out of it and do as much to give back in whatever way I can, it's the only way I can look at my self and say well yes maybe I did deserve this. I hope this helps.


    2. Thankyou Kirstie, I know you're right it's not like I'd be the reason they'd died and it would be their's or their family's choice to donate an organ. You are exactly right about me having the decision to take a chance where the worst that can happen is the same as what will if I do nothing. That is the main reason why I'm going to do it, the way I see it is even if the worst happens I'd rather die fighting than give up, if that makes sence.

      Everyone deserves to live and deserves a second chance at life, the thing is that I haven't always looked after my health and maybe someone who has would deserve it more. If I do get a new start though I want to do everything I can to earn it and live up to the amazing gift I will have been given.


  52. I think everyone's a little guilty of not looking after there selves 100% but asking as you've learnt that's the main thing. I hope you get your call. If there's any questions you have at any point just ask and ill do my best xx