Is it ok to want more?

Living with cystic fibrosis I always thought as a child and teenager I would be ready to die when death came. That I would be tired of the fight for life and ready to role over and let death happen. How naive I was. Me and my best friend Lou were on our way back from London yesterday and while we were driving along we started to talk about my transplant, as I often do at the moment. It's my way of unpicking at the seems of life, rummaging through the memory's, deciphering the codes in my head left from the trauma of it all. Because when your told your dying, when your so poorly you can barely stay awake, your brain starts to loose pieces of information along the way. It's like it decides what it can deal with and starts to throw out all the other stuff until you are back on the road to recovery and then you start to find all these lost memory's.

Memory's such as ringing my nan and telling her I wasn't going to get a second transplant and I wasn't going to make it. Nothing can prepare you for that conversation, not even your delusions as a teen that when death came you would be ready. Starting to relive those memory's, it's so painful, so raw, it's like going through them for the first time because each time you remember something else and it's all new again, the pain slices through you and the tears sweep my face.

I can only just remember the howling cry of my brother, even as I write about it, it feels so fresh so new and I want to reach Into my memory and wrap my arms around him And tell him how it all turns out ok.

I still don't remember all those conversations I made to so many of my close friends and family that day. I wonder if they will ever come back, part of me hopes they will stay hidden. Am I ever ready to deal with these moments of pain. There are still things I cannot remember from my first transplant and i am sure if they were to come back to me they wouldn't benefit me in anyway, they are hidden some where in the deep fog of protection, possibly just dropped out of my brain forever never to be found.

There is something else I have learnt from this experience, not only am I not ready to die but I'm finally ready to live. Now this may sound confusing for everyone, iv never shied away from life or walked away from an experience to be had but iv never thought I wanted to live to be old, joked about the fact I don't want wrinkles and simply thought that 50, 60 or 80 sounds to old. Sorry for those who are that age, but being young those ages do sound so old to me. Until the penny dropped, stu said to me today about sorting out his retirement fund. My reaction was to well up, I want to be there! I want to be with him when he retires, sending him off down the golf club in the day while I natter away to my friend Lou and go to the spa or some retirement like leisurely thing!

This may sound selfish of me, it does to me. It sounds like I'm simply wanting to much and I should just be grateful for every day I get, god I promise you I am. Sometimes though I catch myself wanting more and hoping I never have to relive those conversations with my friends, not just in my memory's but in real life.


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'We can't relist you'

So yesterday me, stu and my mum sat while my dr, nonnie told us that there was no way I was going to be put on the transplant list and that they were arranging palliative care. I had only a few weeks left to live. We were devastated, my mum and stu were in tears and I was just shocked. This was based on my reflux test still coming back positive. We rung loved ones in tears and watched as our world fell to pieces.

Today we had another test, this time the team came and told us that the test had come back ok and although i still had reflux, they were willing to put me back on the list and would be able to do a emergency op afterwards to sort out any reflux but I would have to be peg fed to stop any reflux damaging my new lungs. I still only have a few weeks window for transplant as I'm so ill and unfortunately I have extremely high anti bodies of 80% meaning the likely hood in getting a match is very slim and there is no way they can bridge me on ecmo this time. So once we miss the boat it is truly missed and there's no more tricks up our sleeves.

This means palliative care is still very important but we have a chance, a small window of hope. They repeatedly said if anyone can do it I can! Please keep praying for me and hoping that this small window is all we need. We have had some desperate and devastating times in the last 24hrs. I am now using bipap when needed and unable to walk anywhere. Just to visualise how far we are into the rabbit hole already.


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Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


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