Thursday, March 14, 2013

final visit with Dr. Cardio man?

Alright I suppose I'm expected to report about my first visit out of the house. It was back to the Heart hospital. I had my semi-annual visit scheduled since last time I went (possibly August) so I was told to keep it since I want to look into the possibility of transplants.
To sum up, I was informed that I was mis-informed (yet again) about what I would need replaced. Again dr. cardio man stated I would need both heart and lungs transplanted, not simply one lung like my cardiac NP led me to believe on the phone a few weeks back. This changes things again. It means that there's more risk, less chance of finding all of those organs etc.
I was also told that the wait list in the city I formerly lived in is much too long for me and I wouldn't even qualify. That was very disappointing to hear as I would totally consider moving back there. I knew the city well, it was home once, and I still have a smallish community there. It's also close enough to home that my close friends and family could still visit me even one a day trip (only 2 hours away). Toronto on the other hand is really far (up to 5 hours depending on how you drive. I don't know as many people there that I could lean on. My family wouldn't be able to come at a moment's notice. Also, there are no jobs for ma belle as she has already checked. Never mind the cost of living: rent would be ridiculous. I know it sounds like I'm already against moving to Toronto for this procedure but I really am still looking into it. Cardio man will schedule an intake with Toronto via tele-health. I am curious, I will go through with it. Only then will I have more info about this entire process. Right now, dr. cardio man just doesn't have enough information as it's not his domain. He usually transfers and that's that.
What's most surprising are some people's responses to my choices. I've updated my social networking, as impersonal as it is, because there are more people than I want to call that are curious about what's going on for me. Given that I'm not much of a "chatting on the phone" kind of person, status updates suite me well. So here are some attitudes: a few folks are encouraging me to "go for it" not realizing what "it" entails. I know people mean well and want me to live, but after all their lovely memes, inspirational captions about living life fully, about quality and not quantity, I get "got for it". How very disappointing. People really don't stop and think before they "speak" their opinion. They don't question how someone might perceive your "helpfulness". I know, I'm one to 'speak' per se. I very much tell it like it is, for me. The thing is, even if someone "told it like it is" for them, I wouldn't be as bothered because it isn't coming from a place of "you should do this or that" as opposed to realizing what they might do for themselves.
Anyway, helpful people just aren't sometimes! And as Treya Williams Kilber said so eloquently in her book, you don't know what you'd do until you're faced with it so everyone who's thinking they'd "go for it" better realize that they aren't there. If you're not IN that space you have no idea what you would even do. That spaces changes things so don't pretend it doesn't.