Sadness at 7

Sunday, May 08, 2011

Well I never thought I would be posting again so soon with news of yet another call. I had been struggling much more than usual after the last call, really finding it impossible to "bounce back" or in fact gain any ground back at all.

It was my 24th birthday on Thursday the 5th and I must admit I wasn't bothered about it at all. At this stage in the game milestones are a mixture of emotions, thankful to still be here but gutted I've reached another occassion still being stuck in limbo. It also serves to highlight how much worse I am healthwise since the last big occassion. I hardly ever go out now, this year I've been out about 7 times in total and probably 4 of those were to the hospital, life is literally played out within the four walls of my room. Even walking the 20 steps to the bathroom is beyond me some days. I had no plans for my birthday, until an invite popped through my letterbox, inviting princess Tor for a royal tea party in honour of my 24th birthday, my amazing friend Lindsay had arranged a little tea party at her house. On the day I felt horrendous, shakey, nauseaous and tired but I was determined to get there. It was a real struggle and mum and I had several cross words in the attempt to get me ready. Lindsay is such an incredible lady, she had already told mum that everything could be brought to me if necessary, and came to collect us in her car so we didnt have the worry of how to get there. When we did arrive I was gobsmacked by the effort she'd put in, there were pink streamers and banners everywhere, balloons, bunting, flowers, and so many cakes and sandwiches that she had made herself. Everything had been done to make life easy as possible and she had thought of everything. We ended up sitting on the sofa as I was getting quite hurting with my back and just had a throughly lovely afternoon chatting with her family and feeling very loved. When I got home I must admit I was exhausted and my lungs were annoyed from the exertion but it was completely worth it. I am so lucky to have someone so special in my life.

Thursday was my actual birthday, obviously my body didn't realise that as it was misbehaving more than usual. I woke up after a bad night feeling very tired and sick. I didnt have the energy to make it downstairs so stayed in my room in pj's all day. I had a huge amount of cards and gifts, I couldn't believe it! Family and friedns dropped in during the day and I managed to see some of them when I felt a little better so it was really lovely. After everyone was gone I was so worn out I couldn't wait to chill out and get to bed early. Then the phone rang. I knew straight away who it was, ironically it was a week on from call number 6 and I had been thinking a lot about the donor family a week on from losing their loved one. Harefield had another good match for me, I was told there would be a long wait and to come up to the hospital. I could not believe it and actually asked if they were joking. They weren't.

So we made the long journey to Harefield, I was too weak to make any attempt at getting myself dressed so mum had to come and help me as usual before we left. When we arrived it was a complete blur, I just kept thinking that there was no way this was happening tonight. I had a bit of a time of it with bloods, which immediately made me very stressed and wound up. I requested that an anestetist come and try for me as they are the best at doing all things needle based. After several botched attempts by the doctor, the anestetist got it all first time which was a relief. Then the wait began. It was around 12am when bloods etc were done and we didnt hear any news until gone 4am. As I have said before, every call is different and this time I was absolutely petrified. I was worried that the call would go ahead, I was terrified by the enormity of the operation and it's recovery process, the lines and drains and all it entails which are one of the biggest fears for me. I was worried that I wouldn't cope, that I wasn't worthy and that I could never live a life that was enough to honour my donor in the right way. I didn't know how to begin building a new life that has never been my own to do exactly as I like adn I worried that I would fall short of everyones expectations. I knew I would always fall short of my own.

I know that many people will wonder how I can feel so scared when this transplant is the one thing that I hope for everyday and my only hope of living. They might even feel angry about it, as though I'm not grateful for the chances I'm getting.Believe me I hate that this overwealming fear has crept in and taken hold of me, I wish that it wasn't there and even now I am still in it's grip not knowing how to try and lessen it. In my heart I could never ever turn a transplant down and if they phoned again right now I would be willing and ready to go. But it doesn't stop me feeling terrified all the same. I know how much rides on this one phonecall and I think that is what makes it so frightening. Wanting to be reassured that I will cope and wanting to do a donor and their family proud. I have alway been someone who gets scared of new situations,especially meeting new people etc. Being so ill is devastating and takes away confidence itself, and after so long like this in a way it's safe, not going out, not having to do things makes it harder when you do eventually face up to them.

Obviously the call didn't go ahead and even with the fear I felt I was so disappointed. New life is scary and uncertain but is the only hope I have. Since the call I have been in such a mixture of emotion I can't begin to describe. At first I felt numb, and zoned out, I still feel in a bit of a blur. I am randomly very angry at everything and everyone, and most of all devastatingly sad. It's hard to concentrate, hard to be "present", to know what to do to feel better. I feel like another call may be close but who knows? I wnat to make things better for next time but don't know how to. Physically I am in the worst shape I think I have ever been. when we rolled in from the call at 6am I crashed out for a few hours fitful sleep. When I woke mum was downstairs, she came up to find me sprawled on my floor being repeatedly sick. The strain on my body has been immense these last few weeks and it hasn't really had time to recover.My hands and arms are bruised from the repeated bloods, and I have blood spots all down my arm from the tightness of the tourniquet. I have had dizzy spells, been more tired than I can say, been shakey, tearful, in a lot of pain and my lungs have felt swollen, sore and as though they just can't cope. I've also had a small amount of old blood in my sputum which isn't suprising considering how rough they feel. I am resting through need rather than choice at the moment as I need to get back to some kind of normal again.

I am incredibly grateful to the huge number of people who made my birthday so special and who have been there as a constant source of support through the false alarms and dark days. Thank you to you all. Hopefully I will be able to post again soon with a happier update.In the meantime if you know someone who hasn't signed up to the organ donor register, please show them this blog and ask them to consider it. xxx

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  1. Aww, I'm really sorry to hear this. I really hope you get what you truly deserve soon. :)
    Glad to hear that you had a lovely birthday.

  2. No-one should ever be cross with you for feeling terrified and for part of you not wanting it.... a transplant IS a terrifying thing, and if there was any other option, no-one would put themselves through that surgery! You deserve new lungs my lovely - 110% - don't you ever doubt that. All of us rooting for you certainly dont xxxx

  3. Dearest Tor, I'm not surprised you are so filled with fear and confusion...who wouldn't be after struggling through what you have day after day for so long now? Please don't ever doubt that you deserve this transplant, just by reading about your story or meeting you or seeing you on TV, so many people have signed up because they want to think that after their death, they could help someone like YOU to have a new life. What greater gift can any of us ever pass on than to enable someone in your situation to be able to live and breathe and enjoy life? Love you millions xxxx

  4. I'm so sorry Tor. I really hope the time comes for you soon, you truly deserve it. Keep fighting x

  5. OH Tor I'm so sorry - that is such a sad post. Please don't worry about honouring your donor family -believe me all a family wants is you to live and be well and to be grateful for your gift. I'm not suprised you are scared - who wouldn't be, its a huge thing especially after so many false alarms. But you do deserve this. Much love xxxx

  6. Thinking of you & sending my love Tor. I only know you through your blog posts & Facebook statuses but I think you're a real inspiration. Keep fighting & I hope your real call comes soon. And I think any of us who have received big transplants would be lying if we said we'd not felt terrified beforehand.

    Take care,
    Moll x x

  7. Keep your chin up!!
    Of course youre going to be scared and no one would ever judge you for that.
    You dont know me but someone close to me has CF and so i started reading your blog.
    It must be so hard but just think that every call that doesnt work out is just bringing you closer to the perfect lungs for you.
    Thinking of you!

  8. I just found you via a friend on Facebook. Thank you for your total and frank honesty. It's sobering to read. I hope you get tour strength back quickly and rise to fight on.

  9. That is us level now it was my 8th call that got me my transplant.Mind you it was a bit rough getting a call on your birthday.I really hope that your lucky number is 8.
    Hold it together I know how hard it is! But you must devote your strength to looking after yourself,rest when you can,don't worry about honouring your donor just be strong enough to receive the gift of life when it happens.
    I agree that the prospect of the transplant is scary, I was scared stiff every call.
    Don't be too hard on yourself,
    you face the prospect of a new different life, that is hard and scary,but your confidence will come back.
    I know that you will then have a life that your donor and their family will be be proud of.
    Wish you all the best things in this world while you wait and hope that the next call is the one that matters

  10. I mentioned in my last comment, that the calls are getting closer, I still think this is a great sign, you must be at the top of the list now. Although the calls are frustrating, a positive end is in sight. Hope is what gets us though the worst parts of life and that is why you have to keep hoping for this call, it wont be long now.

    As for the wires, lines and drains, they are pretty scary to look at, but once they are there, they will hardly notice them, you will be to overjoyed at being able to breathe. I have PTSD and lines and drains and tubes are some of my worst kick offs, so I can relate to this, but I promise, the minds plays tricks and these are things are not as bad as they seem. Recovery will be hard work, but your working just as hard now but recovery is a lot more exciting.

    As for feeling scared, its natural and dont be hard on yourself for having it. Fear is there for a reason, to protect us in a way.

    Your call is going to come soon, and before you know it, you be doing all the things you dreamt of. And as long as you are happy, then, you have done the right thing and made the most out of life.

    Got everything crossed for you Tor. x

  11. Hunny I really am proud that you have said it as it is. Frank and clear. I hope that readers will have a deeper understanding of the transplant wait and just how debilitating it can be. Everyday of the wait felt for me like another strip was taken away from me, of who I was. Whatever you do, don't stop believing babe. xxx

  12. Hey gorgeous girl,
    I know I'd normally write, but I couldn't not comment on this - you are beyond worthy of new lungs, as one of the bravest (and most sickeningly intelligent!) people I know. Talking to G, he says he can barely remember a lot of what came later thanks to the drugs - he just kept telling us all to f*** off and stop staring at him! Different, but hopefully some comfort. After all you've come through, you can do this. Promise (and as a nursey person, I'm told never to promise. But sod it, I know this one!) xxxxxxx

  13. Unless you have been called no one knows how you will feel.Now been called four times to Freeman.This is a three hour trip to the hospital then a wait(bloods Xray etc) followed by three hour trip home.You leave home scared and elated.Come home scared and deflated.All thoughts pass through your head.I too am scared of the tubes.Don't worry all this is normal!Keep going.Your donor family WILL be proud of you.IT WILL HAPPEN!! Bill.

  14. Im thinking of you Tor, I know you are being strong and its very difficult to stay positive. Im sending you lots of love and hope you get your donor soon. Rae (Robyns mum) xx

  15. I don't know you but a friend of mine had a transplant for the same reason last year and thankfully now has a whole new amazing life. Your turn will come. You are only human and entitled to be afraid. All the very best xxx

  16. Tor you are amazing, don't feel ashamed for feeling scared. You are not in this situation because you decided to be, you are dealing with it because you have to and how you deal with is what makes you amazing. I think about you alot as your wait has been so long, I look forward to reading that update that says you have got your call! xx