Diabetes Self-Management Blog

Maybe. Maybe if Jane (that’s not her real name, but the incident — and its outcome — are real) had been fully informed, maybe if she’d known to ask a few pertinent questions, maybe if her advocate had done some research…. Maybe Jane would be alive today.

From what I understand, all it would have taken would have been a simple x-ray to see if the feeding tube that was inserted after her surgery was in the right place. As it turns out, it wasn’t. It was in her lung. Lungs are not good places to pour liquid meal replacements into. Stomachs are much better for that sort of thing.

According to a friend of mine who is in the health-care business, an x-ray should be taken after a feeding tube has been placed and before anything is flushed through the feeding tube to verify and confirm placement.

Probably Jane would not have been in any shape to say: “Hey! You’re supposed to take an x-ray first!” and refuse to let them do anything else until protocol had been followed. But her sister, who was with her, could have. If only she’d known about that x-ray thing.

Did I tell you this was my state’s premier teaching hospital? The one connected with its medical school?

I’ve been fortunate. My doctors have always gone through exactly what would happen during and after surgery, the pros and cons of each, and what could happen if protocol isn’t followed. Even so, I still ask questions as things are being done. I’ll be sure to ask a lot more after the experience that ended Jane’s life.

Be just as nosy and insistent as you can be. If it makes you feel better, apologize for being a pain in the tush and tell the people you’re annoying: “Sorry, but it’s my body and it’s my life and I want to make sure everything is done properly. I’m sure you’d want the same if you were in my place.” Smile pleasantly.

The Joint Commission (formerly The Joint Commission on Accreditation of Healthcare Organizations) tells us to educate ourselves about our diagnosis, medical treatment, and treatment plan. Oh, and don’t forget to ask the doctor if he has the training and experience to treat your condition. Ask the same about any doctors he refers you to.

Gather all the information you can about your condition. Where do you get the information you need? Ask the doctor. Search legitimate Web sites. Join a support group. Check the library — a medical library if you can.

I’ll admit here that I’m not always very good about gathering information about my condition(s). Recently, for example, I was having problems breathing after any kind of activity — like going from the den to the bedroom on the other side of the house. Should I call the cardiologist? I was certain I wasn’t getting oxygen because my arteries were clogging. Did I need bypass surgery? Could I get by with a stent?

After a few days, I kind of figuratively slapped my forehead with my hand. I have asthma! Dusting off the nebulizer and starting back on breathing treatments did wonders.

Take a notebook and pen with you to doctor’s appointments and take notes. Take somebody with you to take notes if you’re unable to. At any rate, it’s always good to have somebody with you: That person can help you remember what the doctor says — or help decipher your notes.

I go to the endocrinologist with a friend’s brother. He is hearing impaired and the doctor and his staff don’t always remember to look at him when they talk: He reads lips. I know what they’re talking about, can ask questions on his behalf, and I always send an e-mail to his wife (who is deaf) and sister (who is an RN and CDE) after the appointment. People in the doctor’s office also know they can call me to help them communicate with him.

If you have a form shoved at you, don’t sign it without reading it. If you don’t understand something, ask. Ask until you understand what it’s saying. Don’t leave until you’re satisfied that you understand.

I’m not the most mechanically savvy person in the world. That’s why I always make sure my husband is present when I’m learning about a new insulin pump, continuous glucose monitor, IV pump, nebulizer, CPAP machine, or any other piece of equipment I’m expected to run on my own. It seems that we’re expected to do things for ourselves more and more — from sliding our own credit/debit cards to checking out and bagging our own groceries, pumping gas…or operating medical equipment.

My husband being there has another “plus” to it, too: He can also operate any of that equipment for me in case I’m unable to do so for some reason.

This is sounding like a lot of trouble, huh? I often think I needed to have gone to medical school just so I can determine if the doctor is right or just to take care of myself. But it isn’t a bad thing. After all, I believe I care about me more than any of my health-care professionals.

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Comments
  1. Hi Jan
    Since I never remember what a Dr said after I leave and since most of the time I am alone, my son suggested that I buy a voice recorder. I did and it is the best buy in a long time. It was $70.00 at walmart. When I go in I tell the Dr that I hope they don’t mind that I record the conversation. I also use it in the house to remind myself to do something.
    I will take this oppertunity to wish you and yours a Very Healthy and Happy New Year. Shona Tova.
    Regards Lorraine

    Posted by Lorraine |
  2. You’re right, Jan. Add to that knowing what your medications are for, what to expect, what the side effects might be….
    Only YOU can know how your body reacts to things.
    Your doctor depends on YOUR information to treat you better, they are NOT all-knowing.
    I know my doctor is beginning to expect a list of questions that I work up from my research–we have to to protect ourselves!!

    Posted by Mary |
  3. Mary, how did you know what next week’s blog will be about?

    Lorrane, that’s a great idea!

    Jan

    Posted by Jan |
  4. It is not enough to take someone with you. You need to discuss the visits together - during and after the session - to be clear on what was said. As a back up, get the Dr.’s fax number so you can communicate about concerns that occur after the visit. There are somethings we can learn as we go, and have to do so. But many of our issues require consideration longer than the office visit. Schedule a follow-up if you think it necessary.

    Posted by David Wheeler |

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General Diabetes & Health Issues
How Much Do You Know About Diabetes? Six Facts to Get You Thinking (08/25/14)
Doing Your Own Research (08/06/14)
Ensuring a Successful Hospital Stay (08/15/14)
Summer of Health! (06/19/14)

 

 

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