Transplant part 1 ***WARNING contains graphic images post surgery***

Wednesday, January 25, 2012

WARNING!!! Contains photos of my transplant immediately post transplant that are very graphic!

It’s taken a long time to blog, as I haven’t been able to find the words to explain the huge journey I’ve been on since my transplant. I’m not sure I will ever be able to do it justice but here, the best way I can is my transplant journey.
Transplant Journey Part 1
The day before was the anniversary of waiting 4 years and 3 months, I had finally started to believe that the call might not come in time. I was getting worse and there just didn’t seem an end in sight. I went to bed wondering how many more days I would miss out on, how many birthdays and Christmases would be “making do” and how long I could actually keep fighting for. As it turns out hope was just around the corner.
I woke up on October 10th 2011 to the sound of the phone ringing, not knowing it would be the day that would change my life forever. My mum came and told me to pick up the phone, she was excited and I instantly knew it was a call. While I spoke to my co-ordinator my mum got on the mobile to my dad who had already set off for work. My co-ordinator told me that they had potential lungs for me and that they had already proved to be a good tissue match, so that was one hurdle overcome. Dad arrived back home and we rushed about getting my medications together and trying to get ready despite severe breathlessness. I was very calm this time, although it felt surreal as all my other calls had been in the evening or middle of the night.
We arrived at the hospital around 10am and underwent the usual tests, then settled in for the long wait. My co-ordinator came and saw me, she said that we should have some news by 12. But 12 o’clock came and went, we were updated that checks on the donor lungs were taking a while so it would be a little longer. By this time I was absolutely certain that this would be false alarm number 9 and the pain of that disappointment was weighing hard on me. By this time it was about 3.30, I was tired, emotional and thoroughly worn out. My co-ordinator came back and I waited for the words that we would be on our way home, I was utterly shocked when she asked me “what was I doing this afternoon?!”. After 4 years and 3 excruciating months my time had finally come. I had a big beaming smile and we joked about going down for an afternoon in theatre with a masked man (phantom always sneaks in somewhere!). I silently thanked god for that wonderful, brave person who had saved my life and set me free.

After all the waiting things sped up incredibly quickly; there really wasn’t time to get scared which was all to the good! I had to have an x-ray and get washed, change into a gown and highly attractive paper pants! I managed to quickly phone and say goodbye to my nan, and my sister who quite out of character just sobbed and sobbed! My mum had got all my family to write me a card for when the transplant day finally came but I didn’t even get chance to open them as by now it was 4pm and the trolley had come to take me down to theatre. It was only then that I began to realise what an enormous thing I was about to face, but there was no turning back and nor would I have wished to. I smiled all the way to theatre because I had imagined the journey so many times and now I was finally doing it for real. I had to say goodbye to my mum and dad outside theatre which was hard because I knew how worried they would be and what a long wait they had ahead of them. I had written them a letter to read while I was out telling them whatever happened this was a decision I didn’t regret. I asked my nurse to look after them for me while I was away. Then I was wheeled into theatre and my co-ordinator Rob stayed with me while I had another canula sited and started to be put to sleep, I was a bit nervous by then but I reminded myself what an amazing chance this was. I went to sleep holding Rob’s hand and with this blog’s namesake Past the Point of No Return playing in my ears.
Obviously the time immediately after transplant is a blank to me, as was much of ITU, but my wonderful mum wrote me a diary so I can fill you in from her point of view. The nurses did indeed take care of my parents but they were in for a long wait. At 6.30 Rob came and told them that one lung was out and the operation was firmly underway. Then at 12am they were told I was through the op and was being transferred to ICU. At 1am they finally saw their girl again complete with new lungs. Mum was shocked initially by seeing me with all the tubes and writes “Glad you were asleep but wished you could have opened those eyes and given me a smile”. The surgery had been 9 hours in total.

Later that same day the Dr phoned my parents from ICU to say that I would need to go back to theatre as I had developed internal bleeding (not uncommon at this early stage) and I was to spend another 3 hours down in theatre. I had asked mum to take photos throughout the process so that I could look back but even they didn’t do me justice, I looked as though I had been in a car accident; bruised, beaten and full of medical equipment. The staff were amazing and even though I was still asleep everyone talked to me.

3rd day post- transplant and a milestone was reached, the doctor’s removed my ventilator and I took my first unaided breaths. They reduced my sedation and I opened my eyes for the first time. You would think I would have had something worthwhile to say at such a profound moment but sadly all I could think of was to shout “I’m hot!” and then “I need a wee!”. Lovely! Unfortunately my heart started to beat very fast and they had to resedate me, so back to sleep I went. Mum says “This evening you were asleep again but at least I know my Tor is in there, just sleeping”.
The next few days I was awake but very sleepy and out of it, I don’t really remember much from this time except some flashes prompted from reading mums diary. The doctors said that the new lungs were really good but I was having some issues with breathing deeply so my CO2 levels were too high. Everyone kept telling me to try to breathe slowly but I was trying so hard and it just wasn’t happening. After years of shallow breathing the intercostal muscles were very undeveloped and to breathe deeply felt impossible. I was a very frustrating, scary time. I had (unreasonably) expected to take huge great gulps of air and when I couldn’t I was petrified that something had gone wrong.
Day 5 saw the physios helping me out to sit on a chair and working on the exercise bike! That was a shock to the system I can tell you. It started as a positive day…but then things went very wrong. Mum came back for visiting in the afternoon to find a very sleepy girl, I didn’t want her to leave me but as the time went on I became quiet, just gazing around. Mum started to get the feeling something wasn’t right and in whispers was telling me to talk to her! Visiting time was nearly over and she was becoming more and more desperate to know I was alright before she had to go. Attempts to talk to me fell on deaf ears and then she realised I wasn’t even looking at her in fact I was staring straight past her. Then the panic started. Mum tried to get me to wiggle my toes or squeeze her hand but no response. She told the nurse something was wrong and within minutes the room was like a scene from Casualty; nurses and doctors descended on me and mum was ushered outside. My CO2 levels had again got out of hand; they had to re-ventilate me and decided I would need a tracheotomy so that I had the support I needed to be weaned off gradually. The ventilator was strapped into my mouth which meant I couldn’t talk and left me really sore. The next day my tracheotomy was put in which went well and gradually over the next few days I started to be more and more awake.

Day 9 post-transplant saw me have my first bronchoscopy which is basically a camera put down into the lungs to look at how they’re doing. As I had my trachy I was given the option of having this done while awake and as I sat up in bed the doctor took me of a visual tour of my new lungs! They were so pink and clean and it was amazing to be able to see them from the inside, mum couldn’t believe it when I told her I’d watched!
I was still out of it much of the time, but my new "thing" was waving like the queen! I waved when anyone came or went. All the nurses were lovely, they said that they argued about who came to look after me because I was always smiley, which I didn't believe but was very nice to hear!

Emotionally, transplant was proving tougher than I imagined but in ways I hadn’t expected. To be completely honest I felt numb, as though I was almost in shock. It was like I had had to shut myself off in order to cope, what with end of life talks before transplant and then the huge rollercoaster of getting the call, I realised how lucky I was, I felt some relief, and obviously immense gratitude but it was as though no emotion came easily and it upset me that I didn’t feel more. I was quite distant from everyone, had no interest in TV, magazines, books for a long time. In order to survive this ordeal I had to retreat in on myself, I didn’t have anything to give to anyone else. The most amazing thing was how I coped with all the things that terrified me such as drains, procedures etc, I was really calm about it all and 99% of the time just got on with it. This is in large part due to my fabulous hypnotherapist without who I couldn’t have even considered transplant as before treatment I would never have coped. In ICU alone I had 5 chest drains, a neck line, groin line, cannulas, and numerous other procedures that I never could have dreamt I would go through. It really was my ultimate fear and I got through it. The days were very hard as no two were the same, improvement was very slow and I was finding breathing so hard still, deep down I knew it would improve but when you’re in that situation you are constantly doubting yourself. Team that with extreme worry about things going wrong, long days and frustration at not being able to do things for yourself or even communicate with the ventilator still in and I was very up and down. I was so frightened that I wasn’t “normal” and despite constant reassurance from my amazing team (and family), I felt like a failure for not bouncing back quickly enough, not feeling how I thought I should and not progressing as fast as I hoped.
Still I kept trying to keep my mind focused on the road ahead which thanks to my donor I now had a goal to work towards. I reminded myself that I could get better now rather than knowing I would get worse. The sense of obligation to live life and make the most of the gift I’d been given was huge but I wanted to do my donor proud and that kept me plodding on. It was around this time that I asked about my donor and was given the few details I’m allowed to know, my donor had also donated their kidneys, liver and heart. What an amazing person that at the end of their life they chose to give life to all those people, that such good could come out of such tragedy. Whenever things get tough or I get scared I think of them and how brave they were. It is incredible to me that they not only saved my life but remind me everyday to appreciate, live and love it.

To be continued….

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  1. Brilliant Tor. Look forward to reading the rest of your story.

  2. Thanks for sharing this emotional piece. I look forward to the next part. Congrats on your "new" life. Live, Laugh and Love

  3. Read it, loved it! When part 2?! Joking, no pressure. I know it must take time and putting your thoughts down so eloquently must be difficult. So glad it happened! I love telling people about the good news.

    Lots of love xxx

  4. Well done Tor - great to hear from you again. I've been checking daily to see how you're getting on - there are so many things that we 'outsiders' just wouldn't have realized and you're explaining it all so well.

  5. been waiting for your journey for ages, can't wait for part 2. Glad it worked and you are making a good recovery.

  6. you are an inspiration, I have been following you blog since a friend mentioned it the day you got your transplant - your journey is one very few of us would understand but your willingness to share it makes it all the more remarkable. I cried reading your blog - willing you to have a happy ending. I wish you a smooth journey in your onward recovery and hope your fantastic donor family can take some comfort in your recovery. Well done - you are amazing x

  7. Lovely to read about it from your own 'lips'. Thanks, Tor, I'm very much looking forward to the next installment. Stay well!
    J x

  8. Beautifully written. Thank you for taking the time to share this experience with us.

  9. Thanks for sharing your transplant journey! You've been through a lot more than most people ever will! Reading part 1 today was a very emotional moment for me as it reminded me of my stay in the hospital 1,5 years ago (liver transplant).

    And yes you'd think that the first words to come out of your mouth after waking up would be something brilliant and unforgetful... Well, mine "holy shit" :D

    Hope you're doing well, I don't know you personally but I've been following your tweets occasionally. Wish you all the best for this new life of yours! :)

  10. This blog took me on a very emotional journey when I read it.
    My coordinator was also Rob and I was right there when you talked about saying goodbye outside theatre.I am so glad you have been able write it down so we can understand what it was like for you.
    Looking forward to the next instalment and every blog entry about your new life yet to come:)
    Best wishes & stay well

  11. Tor, that's brilliant! I've been following you via blog and twitter for over a year now and reading such a full account of your transplant has left me quite emotional. Well done - what a huge journey you've been on and I wish you so much love and luck for this next stage of your life.

  12. Hey Tor! Beautiful and emotional. I had to stop twice as I had crocodile tears running down my cheeks and simply couldn't see anything :). I am so happy that you are now feeling better, buying sparkly shoes and going to the theatre. It would be a privilege if one day you would like to write a guest blog for Social Beautify about you journey. Much love xxx

  13. Very emotional, crying through reading most of that, took me back to when my daughter was waiting for her lung transplant last year, thankfully she received it too. Sounds like you've really been through it and back, very many congratulations on finally getting your transplant. Very best wishes for a long and happy life. x

  14. Get to hear Tor but even greater to see you collecting your Nephew from school for the first time ever Dawn xxxxx

  15. Brilliant, what an inspirational fighter you are! x

  16. Sounds like an absolute roller-coaster of a ride - I kinda assumed once you'd had the op it would be downhill all the way!

    Sounds very scary, I glad you've come through it now though :)

  17. You don't know me and I follow your blog. I had a friend pass away because she didn't receive her new pair of lungs in time. She also had Cystic Fibrosis. I am so glad and joyous for you that you received your new pair of lungs. My prayers will continue for you that you will adjust nicely to a new way of life.

  18. I love your writing! My niece as we speak is getting her secon double lung transplant she had it last night and she has to go back into surgery in the morning to stop bleeding in one spot. I have lost 2 brothers to Cystic Fibrosis so i know exactly what you are going through. Keep strong and active. I wish you all the best.

  19. Tor - you are inspirational. That's all I can say...

  20. Tor - you are inspirational. That is all I can say...

  21. I want to read this but just can't get past the graphic photos. Sorry. I'm happy that you got your call and hopefully you don't have rejection to the new lungs.

  22. Aaah, just found this on your blog, so ignore my Twitter question!! So amazing you got your transplant and I hope it's still all going well for you & has improved your health, etc :) I'm on the donor list. I think everyone should be. I saw an idea they had to make everyone automatically on the donor list unless they opt out. I wonder if they did this? It would be good if it makes more donors. I expect a lot of people would want to do it, but for some reason haven't officially signed up. I really wish you the very best :) Victoria from the Lylia Rose blog