Thursday, February 26, 2009

gratitude for my Congenital Cardiac Nurse Practitioner

Walking down the patient halls of the Heart Institute I make my way through a cement corridor that connects a nursing-patient floor to the cardiovascular offices. It's the end of a work-day and most people are long gone probably preparing dinners for their families or still stuck in traffic. I've never actually been to my NP's office. I see her mainly in clinics or when I'm a patient on the floors. We talk on the phone, alway from her office. I walk down the empty corridor and hear voices. I recognize the voice as my cardiologist's and know that I'm in the right place. As I turn the corner I nearly bump into my NP. Physically, she is a very petite woman yet stands almost 6 feet tall in demeanor. In this man's world I'm sure she's used to proving herself. Without colliding we greet each other. It's weird, she knows me so well yet I'm still only her patient and hugs are not kosher. We dodge the awkward 'hello, I wanna hug you' moment with me thanking her for ordering the drug literature for my wife and I to peruse. She tells me that there's a lot.

We get back to her office, a dungeon without a window and full of monographs, patient files all over the place. So this is where this woman spends most of her life. Numerous times she's called me after hours, and like today, she's there well past 5pm. Makes me wonder what kind of life she has outside if she's always at work. I admire her dedication and know that I am lucky she is a workaholic.

I take all the literature she has for me, glancing at her bookshelf and commenting how I have some of her books. She smiles back saying "smart girl". I take it as a compliment knowing how important it is to know your body, know your health. Too many people leave it to the "professionals" and do not participate in their own health care resulting in poor or uninformed decision-making. I'm not suggesting all my decisions are correct, but at least I make fully informed and aware ones.

Take this new drug that she wants me to consider, I'm very hesitant. It's not that I don't trust her. She doesn't even know if it will benefit me, but at this stage for the game, she says I have nothing to lose? True, but that's not always the best reason to make decisions about what you're going to introduce to your body. At least she also adds that it can be stopped at any time and that it won't kill me if I suddenly stop! Good to know, eh! I just wonder what the outliers are and can't wait to get to the data. I always go by the outliers because without fail, my body and it's reactions always always end up being the extremes responses (outliers).

Of course, knowing me, I've already ready 2 pages before I even leave the Institute. When I get downstairs I sit under the tree of life (painted on the East wall) and rip open the patient info-box. I start reading. I start crying. This happens often when I read anything to do with my condition. Reading it makes it real and I would rather it not be. I also learn a lot more about what I have when I read studies they point to me. My team doesn't tell me much. Over the years I think their way of telling me things has been in pointing me to the reading I've been doing. That's why I get emotional - it's through the printed words that they're telling me. That's how I found out I had Eisenmenger's syndrome ( another subsidiary syndrome from the big one). I read my chart. Then again, I always read my chart, everywhere and whenever I get a chance.

I remember when I was 16 years old at a cardiologist appointment. I insisted to my mother that I was old enough to go alone. Up until that point my mother had always come with which meant that I wasn't told what was going on. I think they thought I was too young to understand what was going on. I think it's very important that children know what's going on with their health. Even if they don't understand the technical medical terms (hey I still don't with most big words), they need to know that they're being respected enough to be privy to what's going on in their body. I don't blame my parents for keeping it from me even though I was angry about being kept in the dark while I was a child. I understand why they did it - it was a lot and it was scary. However, it was more scary not knowing what was going on.

I had no idea how to answer kids when I sat on the gym stage. I could not participate in gym class when I was in school. I was always made to sit out on the stage while the kids played. For the first few years I sat alone. When kids asked why, I had no answer - I didn't know. I wasn't privy to my own health and didn't even have a simple name. Around grade 4 or so another kid sat with me. That kid had asthma (and they knew what they had). When other kids asked why she sat out, she answered that she had asthma. So, because of her, I had a name to some sort of illness that resulted in sitting on the stage! From that moment forward, when kids asked me, I had an answer. It wasn't the right one, but it was one.

(I wonder if kids who can't do gym are still made to sit on the stage and watch their classmates have fun. I wonder if they get to go to the library or something. What I wouldn't have given to go to the library.)

Kids need to know! How much is too much - I don't know, but they need to know.

Anyway, the year I told my mom I was old enough to see the dr. alone, I took the opportunity to grab my file and read it while he was out talking to my mother. That's not the best way for a kid to find out what's going on. It's also not the best way for a kid to find out the results of their double-lung biopsy that they had when they were 12/13. Trust me, kids may not understand big words, but they have ways. We didn't have Google back then, but we still had books, dictionaries and of course that wonderful anatomy colouring book. If that failed, I also knew how to use the card-catalogue (I miss the old card-catalogue and the smell of the old library where Emerald Plaza is now standing.

I digress again.

Anyway, this new medication: I'm not convinced. I'm especially not very keen on the fact that in order to get placed on this med and funded, I have to undergo a catheterization. After my very last one at age 12, I promised myself I would never ever ever make myself go through it again once I had autonomy over my own health care decision-making. (I've had one when I was very little and woke up in the middle of if, another at school age, then one at 9 then the last one at 12). That's one of the very last trauma's I have not overcome. I'm not sure if I will ever be over that, nor want to be.

I realize that these days catheterizations have probably improved since the 1970s and 80s and that they are now day procedures. When I was younger I was in hospital for 5 days recovering. I think I was also anesthetized. I fought a lot as a child. I hated having these things done to me. I still do.