I’m about 2 months behind on blog updates so this might actually turn into two or three posts. I’ve had A LOT going on, but at the same time I’ve been feeling pretty rough so writing wasn’t on the to-do list whatsoever.
The biggest update is that…*drum roll please*…I’m on the transplant list! Woo!
From the last few blog posts, you probably wouldn’t think I’d being saying “woo!” about being on the list but a lot has changed since I’ve moved back to Ohio and started writing about my entire attempt to save my own lungs.
The biggest change would be that my lungs have just politely said “No thanks. I’m retiring”. They have given up and therefore I’ve moved on from trying to regain my own lung function to accepting the fact that robot replacement parts are in my near future.
It really took awhile for me to accept it, but now I’m extremely excited to think about everything I’ll be able to do with normal lungs. Just ask my dad how ok I am with the whole situation. He loves when I talk about wanting the surgeon’s assistants to record my surgery so I can watch it later. (That was oozing with sarcasm if you didn’t catch that. I really do want to have it recorded but he starts getting all flustered screaming if i talk about it hehe)
As for things I can do after surgery, my friends on Facebook were helping me plan and we’ve come up with some of these ideas:
- Run my first 5k
- Run up and down the stairs just because I can!
- Go surfing
- Go to Peru
- Go back to Stiltsville
- Go on a hike with Bailey
- Participate in the transplant olympics (more on this later)
The list goes on and on but that’s what my bucket list is for.
The only disappointing part about all of this is that I’m actually pretty low on the list for a transplant, which my doctor is pretty upset about. He knows I need it more than some of the people currently listed above me since I’m struggling so much.
For example, my brother had about all the same lung function numbers as me before his transplant but he was still able to work and go out with friends and function normally. Even though I have similar lung function results, I’m confined to the house, on 6 liters of oxygen 24/7 and more often than not, on IVs.
I think the difference has something to do with his lung function slowly declining over years and his body just adapted whereas my feet kind of got taken out from under me after my last surgery and I lost all my lung function within weeks.
Technically my number on the list is a 35 out of 100. The closer to 100 you are the “sicker” you are and more critically in need of a transplant. My brother had something around a 78. This doesn’t make sense to any of us considering the shape I’m in, but I could still get a call any day for the surgery. Or I could be sitting here waiting for a year.
My doctor is currently writing an appeal for my case and all we can do is wait.