Educating and Advocating

I think the biggest thing I have taken away from all of this so far is how necessary it is to educate yourself and become your own advocate.  I’ve read several blog postings by others about mis-information or incomplete information or a total lack of sensitivity in getting back about test results, etc.  Through this process I have learned not to take “results came back normal” as acceptable.  I ask for the actual number of each test and the range for what is considered normal.  I have a running list of questions on my desktop that I add to anytime something pops into my head and I bring this list to each appointment to get clear answers.  Even the best doctors may gloss over something or miss something because they are so familiar with the tests and what they mean.  They also have many other patients and they might be thinking they read something in your file, but it was actually another patient’s file or they may have skipped a line while reading your file.  At my 3rd IUI, the nurse was saying how if this IUI was not successful, for our next IUI we might try…, but I interrupted her because we were done after 3 IUI’s and moving onto IVF b/c that was the best course of treatment for us (even though our insurance doesn’t recognize morphology as an issue) and we only did the 3 IUI’s so that our insurance company would cover the IVF.  If I didn’t speak up, she might have written her recommendations in my file, which would have been very confusing for the next person who read it and even possibly cost us more time and money with the wrong treatment plan.  She obviously hadn’t read my file before coming into the room.

The best thing we can do for ourselves is ask questions and continuously remind our providers what our specific issues are.  And if necessary, remind them of what they told us at our last visit.  We need to ask clarifying questions and ask for more specific explanations.  We also need to take charge and call to get our results when they were not given to us on the expected date.  I rather come off as a little “difficult” or “controlling” than miss something that I could have prevented by asking a question.  Yes, these are our doctors and nurses and they are medical professionals, but they are also human beings and all human beings make mistakes.  These are our bodies and our lives at stake and we have the final say.

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2 thoughts on “Educating and Advocating

  1. Thank you so much for this post! You are absolutely right, we have to be advocated for ourselves. Doctors have variously told us our results were, and I quote, ‘not to bad’, ‘acceptable’, ‘fine’, ‘the low end of normal’ and I have lost count of what else. Although I have not seen the last set I know the first two sets were, on several factors, half the minimum required for viability by standards set out by the World Health Organisation. This just does not add up. It makes me really mad, and I will be chasing this next set until I see them in black and white. I will also be writing down questions from now on, I was so bamboozled and thrown for a loop during the last consultation.

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