The story of my coma

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1

FatCat Anna encouraged me to do this:

At the end of August, 2010, after a couple of months of climbing BGs, which I was unable to control, I saw my endo. My fasting BG was 302, A1c 10.7 (really high for me), liver enzymes in the 100′s (normal is less than 40) and I was suffering increasing mental confusion, and blackouts, which I was unaware of. He did nothing; just sent me home.

6 days later, I didn’t show up at a picnic I was supposed to attend, and my friends came looking for me, and found me near comatose. The last thing I remember is them calling my name from outside the door. Good thing I leave my door unlocked, because they came in, found me, and somehow got me into the car and to the emergency room. The ER DID save my life, after testing me for drunkenness, drugs and dementia — the wrong 3 D’s. All my systems were out of whack, and I was in acute kidney failure.

So I was admitted, and remember nothing for a day and a half. According to the CDE on the case, they took a look at me — age 62, and decided I was a Type 2, and started me on Type 2 protocols. Which meant insulin only to correct highs, but no basal and no meal coverage. And then, couldn’t figure out why my BGs were going up instead of down. The reason for the Type 2 protocols is that they expect the patient’s own body to bring down postprandial highs, which is almost always the case in early-stage Type 2′s. So the CDE fought with them to get them to use Type 1 protocols on me. Whereupon, my BGs started to come down.

Then, because I was no longer acute, they sent me to a rehabilitation hospital AKA Alzheimer’s home, which assured them that they knew how to take care of diabetics. Ha! I arrived there on a Friday night, and the hospitalist was off until Monday, and somehow the Type 1 orders didn’t accompany me. So back to the no insulin except for corrections, and going up into the 400′s after meals (and I was eating only protein, because I knew that carbs would just blow me sky higher than I already was), and they just let me sit there with miserable highs for hours, because it wasn’t time for insulin yet. And I couldn’t corner the hospitalist until Monday, so I was pretty much back into the place where I started, with confusion, hallucinations and blackouts. Worried about going low? HARDLY!!!

Finally, I got to the hospitalist, and convinced him I needed a basal, and boluses before meals, and he put me on fixed doses — wouldn’t let me take control for myself — I’m sure he was used to dealing with passive, demented patients. So I ate as little as possible, and slowly, slowly, my BGs started to come down. But I was there for THREE frickin’ weeks (plus the week in the acute care hospital), when, if I had had proper treatment to begin with, it should have taken no more than a week to recover sufficiently to go home. Fun with spending unnecessary money, and Alzheimer’s patients are SO much fun to spend all your time with.

As soon as I got home, I found myself a new endo (Type 1 himself), who immediately figured out that my insulin needs had changed radically, and put me back on my pump. I have since gotten things back to normal. But I am terrified to ever go in the hospital again, even though I really needed it at that time.

2

Wow, Natalie – this is a truly frightening account, especially considering the “medical” establishment’s reluctance to allow you to be your own best advocate.

3

Thank you for sharing your story, Natalie. I am so glad that you have regained control! It must have been such a frightening and frustrating experience!!!

4

Thank you for sharing this with us Natalie! I got a question here (as you know I’m 48 and took Type 1 at 10) I just wondered if most of the hospital community think just b/c your a diabetic and older…OK get to the point…Do they think that your Type 2 just b/c of your age?

5

I was in hospital for 6 weeks in 2004 being accused of having gone for a booze up between investigations and doctors visits (ketones smell of booze to some people!) and having just had stomach surgery that was the last thing on my mind and the nearest shop to the hospital was over a mile away - just the sort of place one would walk attached to a drip which never went where it was supposed to and in your pjs - not!

Just before they were due to release me, they decided to do one more blood test (apparently they had done it before, but because I kept having to move wards the results had never caught up with me) they diagnosed diabetes type 2 (because of my age). So, they kept me in for another two weeks while they got me stable - and they could get a diabetes nurse in to see me - there were, and still are, none in that particular hospital.

Then to cut a long story short, I had a chest infection and had been vomiting every couple of minutes (or dry heaving) so could not take my tablets. Again, I was accused of having consumed large quantities of alcohol because of the confusion and smells. I was taken back into the hospital and when I came round they asked me why I had not taken my insulin. I was not on it at the time, and because of the fact that there are so few DNs in our area, was never told about sick day rules etc. I said because I was not on it because I was type 2 and they said no, I was type 1! That was news to me!

They put me on an IV drip of what I now know is “human insulin” and never gave me anything to eat - so consequently went badly hypo. Such was the lack of communication on the ward, they accused me of injecting myself at the same time to cause hypos and gain attention!

Now I insisit on doing all my own care - unless I am unconcious for any reason - I am allergic to human insulins!

6

Terrible experience indeed. Thankfully you made it out of that dreadful situation.

7

As you and I have had many conversations about how weird each and every diabetes case is… I am glad you shared this with others, it does make a difference. I would have been very passive and left my care up to others( Dr, CDE etc) and would be incredibly sick right now. It is important to get the message out, To make sure we take good care of ourselves.

Thank you for sharing! xoxox

8

Natalie- What a horrible experience. It just goes to show you that we must always be the “squeaky wheel” when it comes to our health.

9

Natalie, I a “little” late reading this. I am glad that Anna talked you into writing this. Hopefully, you will never have to see another hospital again.

10

Wow, Natalie, what a terrifying story! It reminds me of how awful the treatment was that I got when I was in the hospital for half a month for systemic shut down (before my diabetes diagnosis, but I suspect I was diabetic at the time.) I even got left to lie on the bathroom floor for two hours, desperately pulling the call cord and hearing the nurse stick her head in different rooms, asking who pushed the call button, but never thinking to check the bathroom and I was too weak to shout out to her!

Thanks for friending me, by the way. I’m on a scary and frustrating journey right now, as you already know, and it really helps to have someone who’s been through similar stuff be supportive. “You know who” sent me a friend request, but I clicked ignore on that one. I already felt majorly judged by the things you-know-who said to me in that thread so why on earth would I want that person as a friend contact??? Best to stick with understanding, caring people who have been through the wringer themselves, like you! HUG

11

That sounds awful! I have had a similar problem, but it would take too long to explain. Though I did not end up in a home for the confused!

I am now in contact with a group that campaigns for patient choice in treatment. They have produced a document - a sort of hospital passport - which I carry at all times just in case, and would take with me into hospital for operations that I have lined up. In it you write down your exact regime usually and what you would want to do in the event of problems. You can state what time you want your meals or snacks if your blood sugars are normal or low, and what you want; you can state exactly which insulin you want (I am on pork insulin and it is standard practise to give the insulin IV - and human insulin, to which I am badly allergic and react badly to), and you can refuse to have anything else. You can state exactly what your treatment should be and WHO is allowed to administer that treatment. I myself would put that as long as I am conscious and capable of making my own decisions that NOBODY else is to administer diabetes treatment and that whatever they are going to give me in terms of medications must be explained to me fully!

I would state where my snacks are to be kept (always a good idea to take your own supplies in!) and also where your insulin and testing kits are to be kept - by my bed, in the locker and that I am to have access to it at all times.

Hospital staff really do NOT know what they are doing. Everytime I have been in hospital I have been hypo 7 - 9 times a day on the human insulins and that does not help! I was accused of being attention seeking and even injecting more insulin to make myself hypo.

If you want the e:mail address of this organisation, just ask me.

If for some reason you have to get into hospital before you can get one of these I would strongly recommend writing a letter - and take several copies, keeping one for yourself, one for your family or next of kin, and give one to the hospital and tell them that they must adhere to it.

I am glad you are back to normal again, but I do know just how awful it can be!