Per normal, I’ve been checking the waiting list every weekday and there has been a lot of activity. People being added and transplanted at a pretty rapid pace. The transplant team is a well-oiled machine with this many going on! Most additions are O-type blood, so they get priority over O donors, but there are now fewer A blood type recipients on the list “ahead” of me. At this point, for a local donor, there is only one person I am reading the list as being “ahead” of me. Aside from that, either by not being local or being an O donor, it’s all going to come down to being the best match. If you’re interested, I found this neat page on how they allocate donated organs. I received this from one of the coordinators after she returned from vacation:
I only have donor offers from 5/4 until today and you [sic] name appeared twice but they were not local donors so you were pretty far from the top of the recipient list. Remember the donor hospital gets the offer first and then the offer continues to go out 500 miles until someone can accept it.
That was sent on the 9th, so between the 4th and 9th, my name printed out twice… but I digress.
A change of view
I’ve fully come to the viewpoint to remove myself from this equation of receiving a transplant. It’s not about me or any attention it brings or reminders that my life is different than most people can imagine now. At this point, I’m sleeping as well as normal unless I have a bad feeding tube night. I’ve always had bad lung nights, so that’s no different since being listed. My brain has calmed down during the day and falling asleep never has been difficult.
There are other forces at work that are being orchestrated to procure a donor who has the perfect set of lungs for me… or the perfect set of lungs that will continue the narrative that my life is supposed to follow on for a greater purpose.
Last night, the guys in men’s group, acknowledging that I’m the master of disguising how I really feel, asked how I’m really doing. I responded with what I said above because that’s really where I am right now. I’m not at all sweating the big things. I panic over little things like timing day-to-day activities, seeing things the boys do and feeling like I need to rush over and stop them, etc… but that’s new. Perhaps it’s because too much of my brain is blocking off major issues that it’s not handling the little things, but I’ll leave that to a psychologist to figure out.
Who does need the attention
My support network is more of a concern regarding burn-out or wearing out. Everyone has been on hand basically since the start of February and on alert since I got listed 8 weeks ago. Several of my family members in support have their own health issues or food allergies that make the added work and stress worse off for them, too, and every person in the support team is important to sharing the load and filling certain roles, so it’d be a sticky situation if any of them fall out of play. Someone would surely step in but it’d be a scramble we’d prefer to not have.
My donor, too, and their family. Someone is going to die in order for me to live. That doesn’t sit lightly with me. I’ll forever be different after that day — I’ve already felt a difference since facing this. The gravity is too great to be ignorant of the sacrifice. For this, whatever I’ve given or contributed to so far in my 38 years will no longer be enough. The bar will be raised when restored to full health so as to drive even harder.