miscommunication and poor care, UGH

[Guest guest]

Hi All

Well, the good news is that I'm home. And that MGH and NEMC

residents got a crash course on metabolic disease. The little

ripples from my horrendous weekend hopefully made a few impressions.

In short, I had my first big metabolic crash on Thursday. My blood

sugars started dropping and my BP was strangely high (130/112) and my

pulse was 140's. I called metabolism and they recommended fluids and

labs (I also developed an allergy to heparin and possibly an

autoimmune reaction as well) and they contacted my endo who wanted me

admitted until the lantus wore off. So I traipsed down to MGH and

sat in the ER for 3 hours before being seen. They couldn't figure

out why I was there and they did an MRI for my high BP and it was

fine. Then I sat and sat and gradually I started having difficulty

speaking. They assumed it was baseline (I do ride a scooter so I

must be cognitively challenged too, you know) and explained to me in

REALLY little words that I can go home now. By that time I was

crying and getting confused. I went out to the lobby and I called my

friend and babbled at her and she called another friend who came to

pick me up. My daughter's GI doc happened to walk by and saw what a

mess I was and called Dr. Korson's office and my friend drove me to

NEMC. They immediately suspected a stroke and I had another MRI

(also negative) but my neuo exam was a mess. Metabolism can't admit

adults so I was admitted under neuro, and all communication ended

there. Neuro concluded that my main problem was " stress " and ordered

a psych eval. In the meantime the insulin wore off and I got several

liters of D5NS under my belt and over the next day my speech started

improving. They drew labs before I left and the truth came out- CK,

ammonia, and lactate all high, myoglobin in the urine, and a 6 lb

weight loss after rehydration. Oops.

So the problem was a 36 hour fast (no sugar, no IV fluid) that sent

me into crisis. Now I'm on D5NS for 20 hours a day and I'll

gradually cut back to 12. Metabolism is shocked and appalled and

plan to have a meeting with MGH to discuss this before they move.

And what have we learned from this?

1. Have a workable plan for treatment if fasting might occur

(testing, illness, travel problems, whatever)

2. Have an emergency letter to present at the ER

3. Have meds, diagnoses, lab norms printed up, a brief description

of your baseline function in case you aren't able to advocate for

yourself (and perhaps a brief description of mito)

4. Have someone stay with you!!!

Luckily, my speech is nearly back to baseline and I'm recovering

well. I never saw it coming and I never imagined that I wouldn't be

able to tell the medical staff what was wrong with me or what I

needed.

I just had to pass this along so other folks could prepare NOW even

if everything seems to be under control. You just never know...

Heidi