'We Can't Relist You'

So yesterday me, stu and my mom 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 mom 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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