Saturday, January 24, 2009

I am old enough now that when I talk about Heart Disease to professionals (usually the nurses and doctros that treat me) they assume that it's coronary or arterial or any other mainstream common heart disease incurred by bad diet, lack of exercise/movement or block arteries. It amazes me that even 4 yr degree nurses know NOTHING about congenital heart disease (never mind mine as I've discovered just how rare mine is) treat my signs an syptoms like that of a coranary patient. If I had no idea about my illness I would have died many times over all at the hands of medical professionals.

I am even more shocked to find out that cardiac nurses (those who specialize in the heart) also know nothing about congenital. This frigtens me. I know and understand and have to constantly remind myself that this condition - in the state that I present - is so rare that none of these nurses have encountered an unoperated Truncus, so of course they don't understand that what you give an 86 yr old you can't give me. It frightens me because this institute (the HI) is supposed to be the best institute in Canada, the second best in North America and there is a general lack of knowledge.

I've discovered that there are 2 kinds of cardiac nurses. The first don't care that you know more about your illness than they do. They are insulted when you question protocols. They pull rank and pretend that you know nothing because you're the patient. These nurses become condescending becuase they interpret your knowledge as condescending. Then they refuse to answer questions or treat you like a person with knowledge.

Then there's the 2nd type of (cardiac) nurse that is in awe of any (not just TA) congenital defect that's unoperated on. They use you as a teaching tool. They pull in other nurses, look further into your history and realize just how "amazing" it is that pieces of a heart can pump for 35 years. They are the ones that love their profession, the ones that love learning and the ones that, although never heard of something, will go look it up ON SHIFT so they get some idea as to what they're dealing with.

When I was younger, I hated being a teaching tool. At about age 16 I realized that these nurses were the best kinds to have because my rate of survival would be much better under their care. They wouldn't give me something just because it's given to other heart patients - or rather, they would question the dr/ prescribing something for regular heart patients. Nurses are the go-betweens contact you and your dr. They can be your best-friend or your worst enemy.

Ten years ago this month I almost died at the Jewish General (in Mtl) because of an assumption. I was given something that normal heart patients get. I knew I was NOT to have that drug. I was not concious to say and my partner and friends did not know my entire list of medications I shouldn't have. So, as a typical cardiac nurse would do, they administered a cardiac solution. I was in the expectations, supposed to get better. The problem did not resolve itself, infact it got worse. When I returned to this plain and was able to finally speak, I requested to speak to the cardiologist (some nerve I had going over nurse protocols). Once I talked to him and we established why I wasn't getting better, I turned around within 24 hours. The recovery was a very long 12 weeks. The damage had been done and I was bed-bound for 4 of those weeks.

I do not reveer doctors as gods. I have never ever seen them as saviours. This is porbably due to my experience and education. I'm no science geek and don't have much medical background, but when it comes to MY condition, I can tell even a cardiac nurse a thing or too. My parents, my mother especially, always had such a g-d complex about doctors. To my mother, they were the experts, and you don't question experts. I still don't understand how they managed to make their own decision about a proceedure I was told to have when I was just a year old. It is thanks to that decision though that I'm here today (meaning alive). Or, maybe it is thanks to that decision that I'm here today (meaning in heart failure). One will never know and I like to believe that they made the right decision.

But back to these modern-day HI cardiac nurses. They scare me. They have no clue about most congenital heart conditions. During my January vacation at the HI my chest pains had reached an intolerable level of pain - the nurse on duty that particular night read his protocols and wanted to give me something I've never had before, something that's given to elderly coronary-type heart conditions. I refused what he wanted to give me. First mistake, according to him.