Re: Proactive Healthcare Consumer

[Guest guest]

Hi Janet,

I am glad to finally get on the board and say hello. We are glad you are

here. I think it is such a healthy way to handle grief by getting involved

with a support and advocacy group. You have a lot to share, the primary thing

being the seriousness of this disease, Most people don't want to go there,

but the reality is Pancreatitis is a catastrophic, potentially life

threatening disease. The early disease pathology is different in Acute

Pancreatitis VS Chronic Pancreatitis, but the course and progression of the

disease are closely paralleled. Though the mortality rate is extremely high

for Acute Pancreatitis, the pancreatic enzyme irritants that have begun

circulating throughout the body (as well as various poisons created by the

abnormal digestion of the pancreas by those enzymes) have severe effects on

the major body systems. Any number of complications can occur to both Acute

or Chronic Pancreatitis, including damage to the heart, lungs, kidneys,

lining of the gastrointestinal tract, liver, eyes, bones, and skin.

I share any frustrating there must have been to not have test after test

ordered to diagnosis the problem before it was too late. And, your statement

to, " Be persistent with the Dr.s until they do tests to see what is wrong. "

is very important. We are the healthcare consumer and we do deserve continued

diagnostic testing until something definitive can be obtained.

I appreciate your enthusiasm to promote patient advocacy in encouraging

people to get proactive with their healthcare. That is personally something

dear to my heart. However, one of the things that is difficult for the lay

person when trying to take on the responsibility of managing their own health

care is it is impossible to learn everything we need to know to make certain

decisions. To your statement, " When having horrible pain tell them you want

a CT scan to see if it is Pancreatitis, " it is important to understand that

the CT Scan is not a definitive diagnostic test for Pancreatitis, nor is it

definitive that you don't have Pancreatitis. The CT scan can indicate if

there has been any change in the size of the pancreas, such as atrophy, but

that is in the late stages of the disease. The CT can also indicate the

presence of calcifications. If all of the tests have been negative prior to

the CT Scan, but there are calcifications present on the CT Scan, that would

indicate the need to pursue additional diagnostics, but would neither confirm

nor rule out a conclusive diagnosis of Pancreatitis.

To " Have them check your levels. Lipase, amylase, Tryglycerides, sugar,

cholesterol, " I would like say that the diagnosis of Pancreatitis can be made

very early in the disease by noting high levels of pancreatic enzymes

circulating in the blood (amylase and lipase). But, later in the disease, and

in Chronic Pancreatitis, these enzyme levels will rarely or no longer be

elevated. Because of this fact, and because increased amylase and lipase can

also occur in other diseases, the discovery of such elevations are helpful

but not mandatory in the diagnosis of Pancreatitis.

Other abnormalities in the blood may also point to Pancreatitis, including

increased white blood cells (occurring with inflammation and/or infection),

changes due to dehydration from fluid loss, and abnormalities in the blood

concentration of calcium, magnesium, sodium, potassium, bicarbonate, and

sugars, but, again, are not diagnostic specific tools to diagnosis

Pancreatitis. They can, however, play an important role in determining the

causation or contributing factors. They can also play a pivotal role in early

recognition and diagnosis of risk factors for Pancreatitis complications,

thus ensuring an improved outcome.

As a patient, in the height of an attack or exacerbation there is little

ability for me to process that amount of information. God bless the

caregivers, for all they shoulder. I can imagine the enormous burden and

responsibility they must feel to ensure every t was crossed and i dotted in

ticking off everything they thought should be done. But that is an

impossible job and not their responsibility.

It is disconcerting to know that the general ER residents, and even most

primary care physicians do not understand Pancreatitis, the disease process,

and certainly not the diagnostic availability's. With the current level of

education in Medical Schools and the CEU requirements, they aren't prepared

to effectively handle the patient with Pancreatitis. Most patients with

Acute Pancreatitis present to the ER extremely ill, the ER operates on

disease and symptom protocols and algorithms. These are systems of

information that assist the physician to determine the appropriate treatment

options. (Maybe Jang will explain these in more detail)

One of my goals is for the PAI to be the impetus for the Pancreatitis

algorithm to be revised and updated per national standard protocol to include

input from the leading Pancreatic specialists in a unique collaborative

effort with Pancreatitis patients. To address the primary problem with most

new recommendations, we need to develop a required continuing education

program with units directed towards each specific healthcare discipline, as

well as establish an inservice implementation plan. Once the Pancreatitis

algorithm has been revised, a proposal can be made to the appropriate powers

that be to have it be an official amendment to the national Standard of Care

I would like to, anyway.

Blessings,

Karyn E. , RN

Exec. Director, PAI

Indianapolis, IN

The PAI serves as a means of support, information, and advocacy. The PAI

cannot offer medical advice or direction nor substitute for your health care

provider.