Whose is making the health care decisions? Where is the CP team?

[Guest guest]

Patty,

Sorry to hear that you are not getting support for monitoring Cassie blood

sugar as a preventive effort to Diabetes. Did you see the post where Dr. Pete

Hayden completely agreed with the need for persons with Pancreatitis to do

routine blood sugar checks. As a MD who researches Diabetes complications, he

stated that waiting for a patient to become symptomatic could place the

patient in a potentially life threatening situation, such as DKA. Hopefully,

as a group we are all more aware of the signs and symptoms of Diabetes, and

in the event the symptoms are exhibited, we will remain persistent until a

complete work-up is done.

Unfortunately, because the human body is so adept at compensating for

biochemical imbalances, symptoms become noticeable after the serum blood

glucose levels have been elevated for sometime. By then, the damage has

already begun to take place.

To give you another example of how important prevention is regarding blood

sugar, a lab test was developed a few years ago that is able to measure the %

of function of the current islet cells remaining in a diseased pancreas. The

importance of this is to avoid the " cliff fall " effect that happens when

people with Pancreatitis induced Diabetes suddenly become brittle without

warning. This is significant to avoid unnecessary prolonged elevated blood

sugar. Although every cell in the human body requires glucose to complete

it's cellular function, when there is too much intracellular glucose,

necrosis occurs and the cell dies.

This just doesn't seem justified when a simple machine and a 30 second test

can prevent the problem. Do you have a glucometer? Do you have resources

that allow you to make your own appointment with an endocrinologist for a

baseline examination. Another option I did recently when I was dissatisfied

with my Diabetic Training Team was to pull out the yellow pages and call down

the list until I felt like they were on the same line of the book as I was

regarding Pancreatitis and Diabetes.

For any of you in Indianapolis, I was blown away with the Methodist Diabetic

Training Center. It is part of the Clarion Healthcare System and provides

instruction and a glucometer, if needed, free of charge and does not require

a doctors order or referral. I was impressed, the knew a lot about

Pancreatitis, enzymes, malabsorption, difficulty in achieving glycemic

control. They even acknowledged that I had secondary Diabetes, neither type 1

nor type 2. It was a different disease process when Pancreatitis induced.

They, also, supported the position of persons with Pancreatitis doing

prophylactic blood glucose monitoring. Prophylactic means doing it before its

an actual problem, as a preventative measure. The plus of all pluses was that

they also do not charge for their services as they were operating out of an

extended Diabetes Prevention grant. I spent three hours one on one with an

RD, CDE and an RN, CDE. I still have the 10 hours of Diabetes training

Medicare allows every year.

I realize that Indianapolis is a large medical metropolitan city abounding

with research facilities and services. But, I also have learned that there

are services available in rural areas that are just not advertised. Rural

areas actually qualify for more grants to fund Diabetes prevention. By

definition anyone with Pancreatitis has endocrine insufficiency stabilized by

diet. An inflamed islet cell cannot produce the normal amount of insulin and

also has trouble utilizing the insulin produced. That is why they often call

Pancreatitis induced Diabetes type 1 1/2.

There is recent legislation passes that supports Diabetes awareness programs,

etc. I found that if you call the nearest American Diabetes Association they

can get you in touch with the nearest local chapter. It may be an isolated

individual or two (kind of like the PAI), but through them you will have

access to the ADA.

Another idea is to contact the manufacturer of some of the glucometers, like

acucheck, therasense, etc. Tell them your dtr has Pancreatitis and needs to

check her blood sugar but you cannot afford a machine, do they have any

resources to assist you in obtaining one. I received one in the mail the

following week every time I called. That is because they make money on the

strips. But, again, there are resources to obtain those.

The bottom line of all this is to say that monitoring your blood sugar levels

with a glucometer is an act of empowered self care, It is no different from

obtaining a blood pressure machine to monitor your blood pressure if you fit

the high risk category. That doesn't require a doctor's order. (You do need a

doctor's order if your insurance is to pay for the machine) Stay alert for a

pharmacy doing Diabetes screening. Frequently they will do this once a month.

You can find them in the malls, too.

Another resource that comes to mind for excellent care is through <A

HREF= " www.Joslin.org " >

www.Joslin.org</A>

Here are two excerpts from articles "

<A HREF= " http://joslin.org/news/JoslinFunding1-29-03.shtml " >Joslin Is One of

Seven Institutions Nationally To Receive Federal Funding To

Train Researchers in Childhood Diabetes</A>

[boston, MA, January, 2003] — Joslin Diabetes Center in Boston is one of

seven medical institutions across the country that have been awarded research

training and career development grants by the National Institutes of Health’s

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The

grants are designed to enlarge the pool of pediatric endocrinologists

conducting diabetes research. Joslin was chosen for the grant because of its

strong research program in childhood diabetes.

and:

<A HREF= " http://joslin.org/news/AwarenessMonth2002.shtml " >Identifying People

with " Pre-diabetes " Can Help Prevent the Disease and Its

Complications

November is National Diabetes Month</A>

[boston, MA, November, 2002] — Now that national and international clinical

research have demonstrated that the risk of developing type 2 diabetes can be

reduced by more than half by altering diet and increasing physical activity

to promote weight loss, it's more important than ever that people with

" pre-diabetes†be identified

<A HREF= " http://joslin.org/news/pre_diabetes.shtml " > " Pre-diabetes " Identified as

a Specific Condition

</A>[boston, April, 2002] — There are an estimated 16 million Americans who

have

" pre-diabetes " — a condition now officially identified by the federal

government and  diabetes organizations as occuring when blood sugar levels

are higher than normal but not high enough to be classified as full-blown

diabetes. How can those with " pre-diabetes " be best identified and treated to

prevent diabetes?

For those of you who have read this far, I apologize for how long it is. Good

luck. I support you. Don't give up.

Karyn

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-

[Guest guest]

I do wish you guys didn't feel the need to apologize when the posts

are long when they are so full of such good information that is

helpful to so many of us !

I was going to write to Patty and suggest she buy her own glucose

meter if she could afford it, but you have gone on much further with

very good steps.

ADA's website is diabetes.org. I am going to be attending the

Diabetes Expo in Seattle tomorrow all day...wish me luck...walking

and sitting on hard chairs all day long ... but I suspect there will

be tons of good information out there....

Hugs, Jeannine