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The Wait...

August 27, 2017

(my packed transplant BAG pictured above)   It's officially been 3 months since I've been listed for a double lung transplant. I try not to count the days or months but it's also a weird feeling to know that one day your world that you've worked so hard to adapt to is going to throw you for a loop again..  and it could happen at any minute. I've grown used to all my treatments and find comfort in some of them now and although it's not my favorite i've even adjusted to the oxygen cord that tangles me daily. But the reality is the timer on these lungs will eventually run out and “The call” could come at any moment so whether I'm home or out, fast asleep in the middle of the night, it doesn't matter.. I have to drop everything and prepare for my world to change. I'll have to grab my transplant bag and head out the door for what will probably be the longest hour drive I'll ever take.  We've had classes and numerous talks with Doctors about the protocol and what to do when being admitted into hospital etc..  and I have no doubt that the second my call comes I will just panic and forget everything…haha. Between my family and John, I'm sure one of us will remain calm and collected.. just not sure who that's gonna be yet? ;) I'm also slightly scared of having a “dry run”. This is when two people who are listed for transplant are matched with the donor and the status of the donor lungs once examined at hospital will determine who actually gets transplant that day. Sometimes it turns out that only one lung is usable for transplant and in that case the other person (who only needs one lung) would be the transplant recipient. In that case I would be taken from the OR and sent home without transplant and just wait for the next match. Because I need a double lung, my team has warned me that I may experience a few dry runs. I'm more nervous of the emotional rollercoaster of a dry run than I am of the actual surgery. Anxiety seems to be a normal occurrence in my situation and unfortunately has been cutting into my sleep a bit but I'll address that In another post ;).   For now I'm trying my best to stay focused on living in the moment and taking each day for what it is… another day alive and breathing.

 

Xoxo-Salty

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