Wednesday, January 30, 2013

roller coaster through hell

My cardiac NP called me today, in partial response to my email sent the other day regarding transplant. She also called to check in. I will give it to this woman to work long hours serving her patients and wishing them wellness. My positivity stops there today because I'm now left in a cloud of confusion wondering what exactly I'm doing home.

Our conversation meandered through complications with getting my Designer Drugs (now that I'm not working, they aren't covered, all $4000/mth). I have a phone number to call tomorrow. She also shared with me how she was in communication with my family physician who has been by twice thus far. She was telling me dr. Phys was asking the thousand dollar question: how long. NP shared with me that she told dr. Phys they didn't know. I didn't want to be rude, but this was confusing as a cardiologist read to me what Dr. Cardio man had written in my chart: 100% mortality between 6-12 months. Of course, NP added that it's hard to tell since I've surprised everyone. I get that, I'm not saying I'm giving up, but seriously at this stage there are some things that are certain, like the death of heart tissue, my incapacity to breath with room air. Then she through in confusing statement number two: my heart isn't as dead as I was told. What? This lead to her trying to answer the question about transplant. She added that until I go for a workup they won't know what's really needed but that I may not need a new heart, I may just be fine with lung replacement. I listen closer as she tells me that none of this is possible in this city. Confusion number three: I thought we had the best heart hospital/cardiologists in Canada. If I were to apply to have a lung transplant I would have to move to within one-two hours of Toronto... no ifs and or buts. No chartered plane would be acceptable. Only a move. And then, I may die there waiting. I asked about Montreal, since it's closer and she stated that not only is there a 5 year wait list but that it's inter provincial so our province wouldn't cover it. I cannot believe the politics that exist in order to live. But wait, I'm not done with the confusion.

She insisted that this is all dependent on Dr. Cardio man's opinion that I can even apply. Well, according to ma belle who's been asking him for years what else can be done, he's always stated that I wouldn't survive the surgery. I'm still left with wondering WHY this wasn't talked about before I became so ill. I'm also wondering why this is being talked about now that I'm considered so ill? We chatted for a little while longer with her drilling into me the point about being willing to move to TO. She mentioned Helen Campbell who did earlier this year (she was in the news so NP mentioned her). Great... WHY THE FUCK WASN'T THIS TALKED ABOUT EVER?

Ma belle comes home and I tell her all of this... within a half hour we are on the roller coaster of false hope and magical thinking: she already has a place in Trenton, we could live with her friends, the house could be rented etc. etc. In all this dance I think to myself, if I can't even make it out to the store on such high litres of oxygen, how on earth am I going to make it to Trenton? And how are we going to actually live there? Sure, she can have work, but what about me: my friends and family are here. Where will my support be? I can only knit so much! What if I die waiting (there's a high possibility)? How would she get my body back in Ottawa to bury me? This and a hundred other questions rush through my head as we realize this is all just magical thinking IF and only IF I was deemed "stable" enough for a transplant. It has been drilled into me that I'm not. That saying that "it doesn't hurt to try" is so very false. It's hurts so very much to have hopes raise within minutes and have them crushed again moments later with the reality that I "should have" asked years ago. I should have been persistent. I've lived my entire life thinking I've been informed, persistent and stubborn about my health only to find out that I'm asking all the right questions when it's too late and I didn't even know I could ask them.

I can't reverse time and now it's my fault, had I only asked when I was given the 'sentence' 4 years ago. What was I thinking not asking for a second opinion. I believed that I was dealing with the best.

The nightmare that ma belle has been living is finally starting up in me. This has awakened so much sorrow I feel so powerless. A once opinionated informed woman now reduced to sobs of reality.