Today is the big day. Today is the day I am officially presented to the transplant team. But so much shit is going on I totally forgot until I was driving to class tonight. I should call the coordinator tomorrow and find out if I actually WAS presented. Then await my appointment in April to see what the outcome was.
On the shit front....
Its been a devastating few days in the CF world.
A friend of mine who was transplanted a little over a year ago is in the ICU on the vent and ECMO trying to fight pneumonia and rejection.
Another good friend of mine was transplanted just a few days ago, was doing great, sitting up in a chair and hours later re-vented and now on ECMO fighting pneumonia.
And the closest friend was hospitalized a couple weeks ago for a routine exacerbation but steadily declined. They transferred her to Stanford in CA earlier today to re-activate her on the transplant list. I just found out a few hours ago she was vented and her husband was told she has 7-10 on the vent to wait for lungs, before they have to de-activate her. 7-10 days.
I am just so done with CF. I am so over it. It's too much to handle. I just can't do it.
So please, no matter what religious denomination you may subscribe to, PLEASE sending healing vibes to all three of these fabulous Cysters. They all have husbands (one is engaged and planning her wedding) and deserve SO MUCH MORE time.
Praying with everything I have for these cysters...it makes me realize not to get too comfortable because with CF, it can get really sticky in the blink of an eye. I know that CF'ers have strong stock in them, but this is ridiculous. How much more pain and suffering must this disease inflict before we can safely say that a cure has been found? It just sucks that so many amazing people have to suffer or die from CF. I hope that my prayers find their way to them and that thing turn around quickly.
ReplyDeleteHugs to you Amy, Jenn R(Just Ducky)
Sounds so so sad for everyone involved.And terrifying
ReplyDelete