Well I FINALLY had my transplant clinic appointment that I had to cancel back in February do to insurance issues. Looks like everything is stable, but they want to present my case before August 1st to the team. So that means I need to get a few tests done prior to that:
24 hour pH probe - test the stomach for acid re-flux
ABG - arterial blood gas - test the gasses in the blood
6 minute walk test - see how far I can walk
I also have to get another MRI of my pancreas done, but that can wait till August. I also need another echo-cardiogram and regular blood work done in August.
We scheduled everything today before I left so I won't forget. Hopefully they won't have any issues listing me and I can be put on the in-active list until I need to be actively listed.
It was all very surreal again today. Talking about lung transplants and tests and my case being presented to the doctors. I don't feel like I need a transplant right now so it seems so odd to be having this all done. Its good though, I know that and I would rather have this worked up and only need to get some tests re-done (like CT, ABG, PFTs, 6MWT and blood work) every 6 - 12 months. But to be talking about ripping my chest open to take out these wretched airbags and replacing them with ones that might actually work....well....its weird.
eeeeh I think I have to have the same 24 hour pH probe but that's strictly for acid reflux issues.. they said something about avoiding a certain test in case I need transplanted later on. not sure what that was.
ReplyDeleteI hope your tests go well so you can get a good transplant and be able to breathe. :)
It must be an emotional time, but I hope you can take comfort in knowing that you have cf friends who understand and they'll be an awesome support. Never feel alone Amy.
ReplyDelete