Re: Digest Number 258

September 21, 1999

Comments from Merril

Mito Disorder (myopathy worst symptom), Hepatitis C, cardiac sugery

twice, OXPHOS, severe arthritis,,,,,and more

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...

I think you are terrific!!!! I still owe you a letter!!! I second

every one of your CoQ Q & As. Ahhhhhhhh, if only the docs were so

smart!! I keep handing out info to anyone who will take it, but alas, I

am not sure that they then read and digest (hehehe) it. It's the old

" lead...horse..water " routine. The biggest problem is that they talk

like they know everything. I have a rheumatologist who thinks that THE

answer to arthritis from any cause is to be THIN. Oh, well...... I

like her anyhow and go when I must, but always know that I will get the

" if you WOULD lose weight " lecture. I have all but given up saying " I

WOULD if I COULD... "

LAUREN, before you misinterpret the above, it is in no way meant to put

you down (in re-reading I realized it could seem that way!!!) I am

seconding 's advice not to let anyone make you think they have some

higher level of knowledge than you might. Ask questions, take in info

and then decide to do what seems best for YOU (or your kid.) If you

simply cannot decide what to do with the info you have, either ask more

questions, or decide to go with the advice of a person you are

comfortable with. Life is so full of decisions; some wrong, most right

that an important thing is not to lose today worying about tomorrow.....

Just some advice from someone even older than !!!

Remember, I have just told you that you need not take it.....*S*

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ANNE,

I know you have posted on tegretol before, but I did not save, and

cannot remember (mito??) what was said. I am now on Dilantin,

originally for neuropathy, but now with a higher dose for slowing on the

EEG. My neuro and internist have mentioned a switch to tegretol. Have

read the drug info, but would like to know what you and other people

know about the relative advantages vs side effects for mito people. I

am always afraid to change anything that is not causing trouble to

something that might!!! Thanks.

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Anne (again)....

I have just looked briefly at the hyperlink to medical errors. Will go

back when I have some time.

Ironic that it is Philly, where I have some experience. For about 2 1/2

years I worked for an organization called the PSRO or Professional

Standards Review Organization (which has had several name changes

since). My job (with the two people who I hired) was to visit the (at

that time) 37 acute care hospitals in Philly at twice a year or more to

be sure that they had programs that would prevent at least some types of

errors from happening. The idea was that if a complication or death

rate (morbidity/mortality) rate was high in any specific area they had

to provide proof that they had identified the problem and were

attempting to correct it. We did this by asking for charts of patients

with certain diagnoses that we knew often had increased rates of

problems. Among other things we compared ordered meds to given meds.

Uh Oh.... This was before the JCAH(O) sort of took over this

function. Some hospitals were known by those of us involved to be

" good " places to go. That does not mean that they did not make

mistakes. They did. But they had also had " good " programs set up for

analysis/future prevention, and, for the most part, they were honest

with the patients/families. Turns out that the honesty sometimes meant

that they WOULD NOT be sued!

Traditionally, the nursing staff has been the easiest to work with.

Completion of incident reports, analysis of incidents and errors, and

communication to other staff members in that department is usually far

above that of any other department in the hospital.

If I look only at my own case, which has involved about thirty

hospitalizations over the last 28 years, the errors/potential errors are

so numerous that it is hard to believe that I am writing this today.

Because I will not take anything until it is identified and I know who

ordered it and why, and because my cardiologist often writes for me to

take my own meds, I have averted at least THREE meds errors that might

have killed me. All you Moms with sick kids have good reason to be

" obnoxious " when your kid is in the hospital. You may have an EXCELLENT

doc, but he is not there all the time. And, guess what??

It turns out that in most teaching hospitals the resident CAN, and WILL,

change the orders based on what S/HE thinks is right, even if the

attending has written the orders.

One more " story " and then I will quit. During my first cardiac surgery

(not MCP, BTW), which was a quintuple bypass for six blockages of 80 -

95 % (serious stuff!!!), several things happened. First of all I

required an extra chest tube because the right pleura was punctured

inadvertantly. Found that out many years later when I managed to get a

copy of the op report. Also found out that for a number of years I had

believed that Surgeon A (A big guy in those days) did the surgery. He

didn't. Surgeon G did. In the end, it was a piece of good luck!!

Surgeon G, the younger, but less experienced member of the group

actually had a lower m/m rate, despite the unnecessary nick and

chesttube!!! (And who knows, maybe some resident did that....I was

quite " asleep. " ) Other problem involved some miscalculation with the

cardio-pulmonary bypass which left me post cardiac surgery with 26 (yes,

TWENTY-SIX) pounds of fluid I did not have before surgery. I certainly

did not need any help in the being " large " department!!! Fotunately my

just-repaired heart handled it.

So what's the point of all this??? I don't have the answers. For all

the years I worked towards identification, and more importantly,

PREVENTION of health care errors in the hospital setting, I am not sure

that I made a dent. But I tried. So, Anne, you have touched a place in

me that still hurts because I know that every day critical mistakes are

made, people die, families grieve when they didn't have to, big bucks

are spent the wrong way, and it would seem that it gets worse, not

better. And for the most part, those directly affected (patients and

family), don't even know what REALLY happened.

Maybe, once we get past the mitoWHAT??? problem, we can band together,

compose a document and get national and/or international coverage. Will

that help???? I don't know. But most things are worth a try.....

September 21, 1999

In a message dated 9/21/99 11:33:12 AM Eastern Daylight Time,

allennco@... writes:

<< My neuro and internist have mentioned a switch to tegretol. Have

read the drug info, but would like to know what you and other people

know about the relative advantages vs side effects for mito people. >>

Hi, Merrill -

I know this was intended for Anne, but and Zach and Sammy have some

similarities, so I always find myself " butting in " or referring others to her

(as she has far more experience and knowledge than I do!)

BUT - has been on Tegretol for nearly a year now. I have always said

that I didn't think he had any side effects to speak of aside from when we

are dickering with dosages . . .and then he walks like a drunken sailor for a

few days. However, developmentally, I was concerned that his memory seems to

be spotty sometimes. He forgets people's names . . . people he sees

frequently and has known for his entire life. Now, mind you, he is only

three. But still, it was enough that my mom noticed it and commented that it

was strange. Once, he forgot Pooh's (as in Winnie the Pooh's) name. Pooh is

his favorite character. He couldn't come up with his name . . . started

calling him " that bear " . Okay, so it could be a lot of different things and

I never suspected the Tegretol. I thought it was some sort of mito symptom

to be honest . . . dementia or something. I started doing some research on

extended release Tegretol (Anne and I have been discussing this on another

list) and I found a bullentin board with postings from adult patients and

nearly all the posts mentioned short term memory problems, forgetting names

that they KNOW they knew, forgetting the words for familiar object, and the

frustration related to those memory issues. I started thinking about when

the symptoms with 's memory started, and it was just after we started the

Tegretol.

I have not fully thought through all of this . . . . so maybe this is not

reasonable. And there are SO many different factors involved, it is hard to

say whether the Tegretol is the CAUSE of the memory problems, or if the

seizures and the stroke-like episode which were the reason for the Tegretol

are also the root cause of the memory problems, OR if all of it is really

just related to his mito disorder. Who knows?!!! I guess if we ever wean

from the Tegretol, and his memory improves, then we will know. But, I

sort of doubt that will happen any time soon.

If you are interested in the bullentin board with the posts . . . I could

probably find it again. Just let me know. Not mito patients, but adults

with experience with Tegretol.

Hope I didn't just muddy the water further . . .

Kathy

mom to (nda) and (Complex I and III defects)

September 21, 1999