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A different doctor visit

Penny has been having issues with too-high blood sugars lately.

When she was first diagnosed in 1991 with type II diabetes, our doctor, Dr. Eberle, explained that she had become insulin resistant, and then proceeded to prescribe drugs (which even then were known not to be an optimal solution because they stop working effectively after about a decade).

After going on insulin in 2002 (just two months before her cancer diagnosis) her blood sugars were moderately low, but she was gaining weight because that's what insulin does if you aren't exercising, and she had this cancer thing going on. If you're unfamiliar with endometrial cancer, the trick is, the uterus tries to get rid of the stuff by essentially giving birth to it.
Penny had this thing for almost a year before it was diagnosed, and it wasn't until September of 2002 that they did the surgery. During this time her blood sugars were wonky, because the doctors said "Don't fret too much about the blood sugars because you have to deal with the cancer."

After the surgery she had a couple months of radiation treatment, and after the internal radiation treatment, she was like a puppet with the strings cut.
She actually could not walk unaided for about two weeks.
So, it took a year for her to get to the point where she could move easily, and the side effect was that her already-thrashed knees, which had been damaged in high school and which had less than a quarter the cartilage left.
So around January of this year, she was well enough to be able to be frustrated. And, it's time for the sugars to go under control.

Her doctor added regular insulin (short-acting) to supplement the 70/30 premix she'd been taking. It helped for a while, got rid of the outrageous high sugars, but then went no further.

So, despite tweaking the timing and the food, nothing was working to get it lower and keep it there - it made no sense.

After meeting with the dietician, we learned that Penny needed to be eating a much different ratio of carb/protein/fat than we'd been doing - selecting the protein based on her metabolic need, adding about the same amount of carb, and filling in the rest of the caloric requirement with fats. It's actually a balanced diet, and fairly easy to cook.
Also we learned that she wasn't thrilled with the 70/30 premix as a means of controlling the sugars - it's what children use because they can't be trusted to mix the right amounts of short and long acting for the amount of carbs being consumed.

So we tried it for a while, and ... after a while, sugars skyrocketed.
Fed up, we talked to her doctor (Dr. Kroonen when we set the appointment, Dr. Aebe when she got back from her honeymoon and we HAD the appointment.)
She finally agreed to set Penny up with an endocrinologist.

Well, that visit was today.
Either Kaiser can't afford endocrinologists who have MD's or they choose not to. My own endocrinologist was an MD, but we didn't want to go 50 miles crosstown to the Sunnyside hospital to see her, so instead got to go to West Interstate (in Portland about 25 miles away) and saw Mr Lima.
Mr Lima is a very short, very nice man, roundish and with a beard and pepper-salt hair. He was also very thorough, going over her history, double-checking the chart, and asking about symptoms etc.

We told him that she was insulin-resistant, per Penny's original doctor. He looked at her logs (the upload wasn't functioning right) and did some calculations, and based on her weight, informed us that she not only was NOT insulin resistant, but that she's taking less than a third the insulin she would normally be expected to take. Either .8 or .08 units per kilogram, I forget where the decimal was, but ... not enough.

This turned the world upside down for us.
Everything we've 'known' about this disease for 13 years is, it seems, mistaken. Had they done the 'expensive' thing and measured her insulin levels, which has not been done at any point, they would have been able to say "yes, you do produce insulin, but not enough of it."
As now appears to be the case.

So he wants us to change her dosages, slowly to avoid low-sugar incidents.
We've determined she should do upper-body exercises, the sit-and-be-fit series taped off PBS, to get the metabolism going back up.
We need to find an uplink cable for the one-touch meter.
And give him the upload in two weeks after she's been on it.

In the long term ... she'll be taking insulin at each meal, preferably with the amount of fast-acting adjusted to match the amount of carb she'll be eating, and taking a daily dose of extra-slow-acting to keep her baseline going. Depends on how she responds.

But there's light.

Comments

( 2 comments — Leave a comment )
gamerguy
May. 20th, 2004 07:41 am (UTC)
My mother, about three years before she died, became diabetic after the large amounts of medicine used to keep her breathing damaged her pancreas. She was having difficulties in the hospital and literally no-one knew why. Then one new doctor comes in, looks at her for about 20 minutes and says 'you're diabetic'. And lo and behold she was; when they tested her sugars, she was somewhere in the 400's.

So, at 74 years old, she had to change her eating completely.

In those three years, I lost any shred of respect I ever had for the medical community. With the specter of diabetes looming over such a huge portion of the American population, I discovered there are not very many people at all that know a goddamn thing about it. Certainly our doctor did not; I really wonder now how many people he's basically sent to their deaths because of his ignorance.

And it's not only them. The hospital was feeding her totally wrong food, because they were still using the point system instead of carb counting. So she'd get something good for lunch, then they'd give her something like mashed potatoes, fried fish, sweet applesauce and something else for dinner, which fucked her up completely.

After about a year of trying to keep her sugar under control, we went to a free clinic discussion on diabetes. WHat they told us was completely different from what the doctor told us and what the hospital gave us. We were testing her sugars only at night as she went to bed. They were always good, but she wasn't feeling good during the day; then we found her sugar was spiking as high as 500 after a meal, with 2-hours-after-meal testing.

More stuff ensued and finally we went to the diabetes clinic here in town. We practically had to beg for a referal. The doctor didn't seem to think it was worth it. They did some of the same tests you mentioned and determined she needed to be on insulin; the drugs she was on really were just helping a little. She was much better after that, and finally getting to see the endocrinologist - after a five month wait - helped. She was very good and helpful as well.

You might want to look into Lantus; that helped Mom a great deal, because it lasts all day long.

foomf
May. 20th, 2004 12:31 pm (UTC)
Since we're on Kaiser (at least for the moment) we have learned to be aggressive in our management of the treatment. We had to push to get
Lantus is (iirc) the slowest-acting insulin. That's what Penny will eventually have for her baseline, with small shots of a fast-acting at mealtimes. Or at least, so we think. Depends a lot on what they figure out.

The 70/30 twice a day? No good.
( 2 comments — Leave a comment )

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