Friday, February 20, 2009

Circle of Willies


I am a control freak. Or at least,I try to be. Not in the sense of my blood sugar never goes above 150 post-meal..more like, I don't trust anyone else besides my cde/endocrinologist to be making suggestions about my D-care. Especially not the local community hospital, and even at University hospitals it can be touch and go as to whether you'll get good care. Unless you have a pumper doc/nurse or someone who knows about pumps.(not very likely)

There's something I haven't quite figured out yet, and its a subject that's discussed even less frequently among doctor/patients then "How's your sex life?" (which is a question I'm not likely to be getting for 30+ more years anyway)

What you have the rights to, D-wise, in surgery or in the hospital. Some surgeons literally demand that you must go off your pump and onto whatever system they've got and some are ok with you staying on your pump. And I've done it both ways, scared stiff to refuse. Because, well, the last general surgeon intent on slicing into my intestinal blockage probably wouldn't have understood if I'd have talked myself blue and though they're quite good at what they're doing they tend to have a mindset that one insulin regimen fits all. Between the language barrier and that,I didn't dare refuse. (fortunately it didn't come to that)On the other hand, the vascular surgeon(port surgery) was ok with me being on the pump. It's a surgeon lottery. I can understand during long, complex surgeries the need to have some control over the situation but with an IV in there anyway they could have access to sending it up or down if the numbers strayed too far. I am easily correctable.

So I think I need some sort of plan. Something that can be given to any future physician who doesn't know much about pumping. I think that would help them see that I'm not the type of patient who will go low on just the basal rate if not doing anything(more like high). (to alleviate fears) I still don't know whether I've got the rights to refuse without them refusing to keep me as a patient. I have hopes that one day..when I'm around 40 or so insulin pumps will be more accepted and the young physicians of today will be the older, experienced physicians who know all about it. The younger physicians, they speak Pumpese "What's your ISF? TDD? Insulin/carb ratio?" while the older ones could care less. As a patient, I feel more connected to someone who shows knowledge about D rather then someone who skirts around the issue. I have D, it is a part of me and it needs to enter the conversation at some point.

The hospital is enough of a place for med mixups/infections/nervous breakdowns as it is. Bright lights. Loud noises. Demented, agitated roommates. Uncomfortable beds. Food menus that make no sense(lots of carbs but no "sugar") and have no nutrional information. Constant streams of people, day and night. Blood leechings. Tests that take forever on cold hard tables and make you miss meals. Endless reruns of "MASH". Waiting all day for the doc to come in to tell you you can't go home that day. Friend/relative visits that awkwardly end as you fall facefirst into your cream of wheat on a medication trip. Lots of decisions, much of which won't happen because its all relative to what the doctor decides when he gets around to it. As for diabetes control, good luck with that, you are on your own. At least on the pump you are not hypoing constantly, you have some control over the situation. Whereas with sliding scales you are pretty much stuck.(haven't been on one in 9 years and don't intend to be)

Some more thoughts on the situation...(Dec.2006)

I wish there were a facility in which only D's(or friends, family members) worked..everything would be done with the D taken into consideration and pumps would be the rule, rather then the exception. Better attention to D translates to better bgs equals shorter stays and improved outcomes.


Anonymous said...

I have only had 1 major surgery (c-section), not pumping at the time but I do believe you made a valid point. One day people will understand our lingo. You know it takes a special person to understand us.


Scott K. Johnson said...

Ooh! Now there's and idea! A special hospital for us... I like it! Or maybe even just a wing dedicated to us?