RE: miscommunication and poor care, UGH

[Guest guest]

Heidi

I am sorry you had to go through this, but it sounds like some

positive things happened.

You might want to have the packet posted on a door or someplace that

would be seen by EMS if they need to transport you and you can't get

it yourself or tell them.

It must have been scary to be in the position you were in. Thanks for

shairing the ideas with the list.

laurie

> 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

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Heidi,

I am so sorry that you had to go through all of this. You are

right in saying that an emergency protocol is very important. Many ER

doctors do not know what to think when I tell them I have mito and most

of my tests usually come back fine (such as MRI's). I have gotten the,

" it's all in your head " , many times before as I am sure most of the

people on this list have. I am sorry you had to experience it as well.

I hope that you are starting to feel better and hopefully you won't have

to have such a horrendous experience again.

a

On Sun, 03 Jul 2005 17:29:33 -0000 " heidicoleman2002 "

mom2colemankidz3@...> writes:

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

[Guest guest]

Heidi,

I am so sorry you had such a crash and sorry you had such a bad

interface with the medical profession

You can get a file of life pocket to go on your refrigerator. It has

basic information. We have one on our refrigerator for . We also

have a note to pick up the blue book on top of the refrigerator that

includes a copy of her emergency protocol, a list of other

hospitaliazations, her medical history, her diagnosis, medicines to

avoid, etc. When we have to take her to the ER it goes with us. It

cut out most of the problems we had at the ER.

Take care, Shelby

> Heidi

>

> I am sorry you had to go through this, but it sounds like some

> positive things happened.

>

> You might want to have the packet posted on a door or someplace that

> would be seen by EMS if they need to transport you and you can't get

> it yourself or tell them.

>

> It must have been scary to be in the position you were in. Thanks for

> shairing the ideas with the list.

>

> laurie

>

>

>> 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

>>

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained

>> herein are not necessarily those of the list moderators. The author

>> of this e mail is entirely responsible for its content. List members

>> are reminded of their responsibility to evaluate the content of the

>> postings and consult with their physicians regarding changes in their

>> own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends

>> one is automatically moderated or removed depending on the severity

>> of the attack.

>>

>>