In Aug I will be heading out to National Jewish Health in Denver for a medical consult for my recurrence of MAC (or NTM, Non-tuberculosis Mycobacterium). I’m going there because I have reached the point where my team here could use help in determining what the heck to do with me. NJH is one of the best in the nation for dealing with this sort of thing. They know CF and they know NTM and they are about to get to know me ;).
My hope is that the consult will provide some clarity on what my options are and thus what’s next for me.
Who am I kidding? The hope is that it would just go away, that I could be done with at least this part of things in my lungs.
My second best hope is that they say things aren’t that bad and maybe I don’t even need to be treated, for even a bit (and that we haven’t lost ground while trying to navigate through the med system to get there).
My third best hope would be that if they do recommend treatment, that it’s something that’s doable for the rest of my body, that I can keep quality of life through it, and that it will have a beginning, middle, and an end.
My fourth best hope is that if it has to be an ongoing life long series of treatments, that it is something that I can learn to live with and still enjoy lots of life and that it is as kind as possible for the rest of my body.
Beyond these possibilities I don’t want to think about it right now.
This has been hard.
That said, I really appreciate that there is a place to go that has more expertise and that I am getting the opportunity to get there.
I will gratefully receive their perspective and consult and then make a decision about what feels right for me.
It has been a long road since Jan when we discovered that the last treatment that I endured for a year and a half was not successful. Or maybe it was, but not as successful as we’d hoped?
I’m doing my best with all of this. My body (and mind) has its ups and downs, but really feels pretty ok. Basically, I R Ok ?.
Prayers and love vibes very welcome though and received with gratitude as Rick and I continue to navigate our way through this next piece.