'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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Breathless and scared

The radiation has already taken its tole, I feel weak, tired, sick, my body is exhausted and all I can do is sleep, but part of me knows that exhaustion comes from the fact I'm now very ill again. This chronic rejection is so fast, everyday I wake up and feel noticeably worse, today just moving leaves me breathless. I haven't had the puff for a shower today, or to even get changed from my pjs. I'm scared. I try not to think about it, not to worry, sometimes it seems like it all happened to quickly that it hasn't sunk in yet, then I get these moments when just walking to the bathroom feels like a mile again and I know this radiation has to kick in and fast.

A friend of mine who was also diagnosed with chronic rejection but at the moment there lungs are unchanged told me about how they asked how long they had left, I didn't think to ask this, but now I sit here and I guess I didn't need to ask, if this radiation doesn't stabilise me, not very long. If it does well, I still can't imagine with my lung function so low that that would be very long either. I know it's sounds depressing and pessimistic. I'm not trying to scare anyone, but these are the thoughts your faces when everyday things are significantly worse then the day before.

Many people have asked me about re transplant, it's not something that has been discussed in length, more slight whispers and mentions. For me, all I can say at the moment on that one is I'm devastated. I don't want to give up these lungs, they were so perfect and beautiful, they worked so well and then my immune system destroyed them, my old lungs I hated and couldn't wait to give up. These I love, they have done so much for me and I feel emotional attachment to them In A sense. I guess that's all I can say on that one as I don't even really know if it's a option.

I will leave that post there for today and leave you all with my emotional turmoil.

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