Tuesday, November 11, 2014

Why am I providing more information than the doctor?

    I was originally diagnosed with Type 2 diabetes at 26 despite being young, borderline underweight, relatively active, and having no family history.  But, that story has been told plenty of times.  I was given a prescription for Metformin and told to come back a week later for a second blood glucose test.  When I asked about a meter I was told I could get one now but it wasn't really necessary yet so I could wait a few weeks.  Basically, I was sent home with a diagnosis and directions to take a pill morning and night.  Given the stigma and some of the fear surrounding diabetes it's safe to say I was more than a little freaked out.  Thank God for the Internet!  I dug in and found as much information as I could.  Recipes, dietary suggestions, carb counting tips, carb exchange info, forums, online communities, and plenty of misinformation.  I also found a lot of confusion because a lot of the symptoms and warning I read about signs of Type 2 diabetes didn't really apply to me aside from elevated blood sugar, constant thirst, and peeing ALL the time.  I did, however, fit the bill for many of the Type 1 markers that I read but surely my doctor would have looked at those and ruled them out somehow before making his diagnosis.  I trusted him because he is a professional and you're supposed to trust your doctors decisions, right?  When I did ask about the possibility of Type 1 I was told the Metformin would not have worked if it was Type 1.  When I asked about LADA or Type 1.5 or MODY the response was "What are those?  There is Type 1 and Type 2, that's it."  And the information on anything else I could find was pretty spotty so again I trusted the professional.  Even over a year later when I asked for a referral for an auto antibody test and a c-peptide test because none of the oral meds were having any effect on anything but my bank account I had to explain to the 'professional' what those tests were and why I needed them.  It's a very good thing I did because that is what got my diagnosis correct and got me started on the proper treatment for Type 1 diabetes.  It's also when my doctor kicked me to the curb because he knew nothing about Type 1 diabetes (obviously) which was fine because I was already moving on.  And best of all it was the point where I realized that, ultimately, my healthcare and treatment are MY decision and I should not be afraid to speak out if I think things are not going the way they should.
    Earlier this year my father was diagnosed with Type 2 diabetes.  When I my mom told me I, of course, started asking a lot of questions.  What was his A1c?  Did they give his a meter?  Did they set any goals for numbers for him?  I wasn't too surprised when I was told that the doctor didn't say what his A1c was, that they didn't give him a meter, and they hadn't given him any ideas on what his numbers should be.  I know that a diagnosis can be overwhelming and that throwing too much information at a patient at the very beginning can probably just increase that.  But what good is a diagnosis if you just send the patient home knowing they have diabetes but only knowing that to treat it they should take these pills twice a day and cut back on the carbs.  I spoke to my mom a week later after they had seen the doctor again.  They had given him a meter, but not much guidance on what to do with it.  No goals for post meal numbers, no goals for fasting numbers, no real direction on when to check or what to do with the results.  What good is a blood glucose check if you don't know what to do with the information it provides?  My dad had just been started on a new medication to lower his blood sugar and neither him or my mom would have any idea what to do of he had a low blood sugar,  Even of they thought to check and saw a number below 70, they weren't armed with the information to know that they needed to react.  They also didn't know what numbers to avoid, what was higher than normal, what to shoot for after a meal.  If his blood sugar was running high after meals he wouldn't really know that it wasn't where it should be and would likely be scolded and marked non-compliant after the results of his next A1c.  I asked my mom a few more questions and helped answer some of hers.  At the end of the conversation she told me "I think we need to talk more because I don't know what most of the stuff you're asking about means."  I SHOULD NOT BE ABLE TO OR NEED TO PROVIDE MORE INFORMATION TO YOUR PATIENT THAN THE PERSON WHO WENT THROUGH YEARS OF MEDICAL TRAINING AND IS BEING PAID TO HANDLE THEIR HEALTH!!  My parents are in their 70's.  They are by no means internet savvy (although Mom is beginning to surprise me with her internet skills.  She's all over Facebook).  They live in a fairly small town, 250 miles away from the nearest metropolitan area.  Their access to different doctors or specialists is very limited.  And they don't really have much of a way to seek out more information on their own.  And they were treated the same way that I think most patients are upon diagnosis of Type 2 diabetes.  Something is wrong with healthcare in this country.  Diabetes is an epidemic and it's numbers are increasing rapidly every year.  It is quickly rising up the list of diseases that claim the most lives.  Yet, doctors seem to just dismiss it without supplying newly diagnosed patients with any information on how to fight it.  I am glad that I am informed enough to help my parents take care of this correctly after dealing with myself, (it's one of the bright spots of living with diabetes) but I shouldn't have to.  Really, I would just like doctor to do their damn job.

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