Re: miscommunication and poor care, UGH/Ann-Marie

[Guest guest]

-Thanks Ann-Marie. I think the crash was due to a lot of factors but

it definitely wouldn't have been as bad if I hadn't been stuck at

MGH. I could have bolused some D5 at home and probably would've been

fine. My sugars have been trending downward because my gastroparesis

seems to be getting worse and I'm not absorbing the formula like I

was before. Plus, was discharged from a 2 week stay and we

had no nursing. She's very high maintenance and I wasn't sleeping.

On top of that, the 2 big kids were out of school and were already

bored.

I've been really fortunate and had such good experiences with

at NEMC. I've also had planned admits myself that have gone really

well. The radiology folks were very concerned about fasting for the

PICC line and most specialties have been somewhat knowledgeable about

mito.

It's strange, but I thought having an actual diagnosis would have

helped. But since the MRI came back normal, it must be

psychological! My symptoms came on so quick that I never had

the " stress and hormones " explanation before. Sure got my fill of it

this weekend! lol

I'll be getting together an ER packet for future use. Would it be

helpful if we made a file of sample letters, info sheets, etc. for

people to use as templates? I did that long ago when I wrote up

's first info sheet. Now we have a couple versions that we

use for different situations.

Take care

Heidi

-- In , Ann-Marie Mc

wrote:

>

>

> Hi Heidi,

>

> So sorry that you crashed and then ended up at MGH without them

knowing a

> thing about Mito and what was going on with you. That is itself is

> stressful. How demeaning that MGH spoke to you in that manner.

Little words

> because she is obviously is SLOW and has cognitive problems. I

can't

> believe that no one suspected a possible stroke, low or high blood

sugar

> levels. Why do they think we are off our rocker or that everything

is

> stress related? It is humiliating.

>

> Sure am glad that 's GI doc recognized you and called Dr. K

for you.

> You said that all communication ended after you were admitted by

Neuro.

> Does that mean that Dr. K's office didn't follow while you were in

the

> hospital? Or was it just Neuro that followed you. Sorry, my brain

isn't

> working properly today(this heat is causing me tons of problems) so

I may

> not be understanding you.

>

> Thank you for reminding us all how IMPORTANT it is that we have our

> Emergency Packet together and with us at all times. And to have a

protocol

> from our doctors to help the ER manage us. Because there are times

when

> having someone with us isn't always possible.

>

> I am glad that you are home now. Was your crash due to you not

eating, your

> blood sugars, or fasting for a test or labwork? or was it a Mito

crash? You

> must have been so scared not being able to communicate with the ER

staff,

> and being all alone is also frightening.

>

> Take are of yourself, stay cool, and remember to eat and drink.

Hope you

> improve with each day.

>

> Hugs,

> Ann-Marie

>

>

>

>