Tuesday, August 27, 2013
Such a scary time! Holy crap!!
I'm in the midst of being evaluated for a lung transplant. I've been in and out of the hospital doing tests for the past month, meeting with all sorts of doctors who are checking on the status of pretty much every organ in my body to see if I'm essentially "healthy" enough to go through such a complicated and risky surgery.
After meeting with the doctor today I am utterly confused and lost.
I was happy to report the news that I am feeling much better and stronger, that my lung pain, body aches, and cough are gone and that I am a bit less short of breath. Every time I know I'm about to visit a doctor, I build an invisible protective shield around myself and do all that I can to preserve my positive mindset, being that what they say can very quickly drain anyone of all hope. I realize that they're trying to help, and am grateful for that, but somehow I always leave their office with a strong urge to jump off the Empire State Building!!!
Today was no different. I went in there not confused and left there completely lost. My invisible protective shield didn't hold up very well.
The idea is that, although they cannot confirm the diagnosis, the doctors seem to all believe that I have a very rare and terminal lung condition called PVOD (Pulmonary Veno Occlusive Disease). In order to confirm it, I would need to do an open lung biopsy, a procedure which I'm currently not healthy enough to undergo. As a result of this, they feel that my best bet for prolonging my life is to undergo a lung transplant. The issue there, is that the life expectancy is not very promising, and there are millions of other problems that could arise as a result.
My argument was that since I feel so much better, why would I rush into a procedure that is so unsafe and potentially life threatening in itself. Their thought is that my condition will not improve, and will eventually lead to heart failure. If in fact it is PVOD, "eventually" would come sooner than later. They believe that since I am stronger and feeling better, that this would be a perfect time to undergo such a tough surgery. My chances for survival would be greater.
I'm sitting here not knowing what emotion to have. This whole experience feels so incredibly surreal. I kind of feel like I should just rip off my oxygen, go have glass of wine (really a bottle) then move to Hawaii and pretend that this was all just a terrible dream.
I am going to have to make a decision very soon as to how I'd like to proceed.
Although the doctors wouldn't be with me on this theory, a large part of me believes that somehow my body is healing itself. As a result, it feels counter intuitive to go through with surgery at this point. The other part of me is scarred shitless that if I don't go through the surgery I may not be around for very long. Right now, the emotion that is in the lead, is the one that feels like I'm healing and therefor should hold off on being listed for a transplant.
What a crazy time! I'm going to think and think and think and feel and feel and feel and let my body help me decide what to do. In the mean time I shall sip on my green juices and pray!!!
Thank you so much for reading this and for being with me on this journey!