Heidi back to Henry

[Guest guest]

Dear Henry,

Maybe I wasn't clear with my story, but no, I didn't have diabetes onset

BEFORE my diagnosis of CP. I was diagnosed with CP in May 2001, two

weeks after my first acute attack in April 2001. The diabetes diagnosis came

just ten months ago, in March of 2003. Even so, it was less than two years

from the onset of CP to complete pancreas burn-out and brittle diabetes,

which is a really excellerated progression. It just goes to show that there are

no set rules or timeframes for how fast this disease can progress. Just like

the weird positioning of my pancreas....everyone isn't the same, and shouldn't

be treated like they are.

Here's a little story....If I hadn't insisted, and if my new GI hadn't been so

thorough, many things that are wrong with me may have been overlooked.

Several radiologists and a few doctors doubted me when examining me,

because they were looking for problems in the " usual " places, and my

pancreas wasn't in the " usual " place. I've had examinations where they

poked and proded where they thought the pancreas was, and when I didn't

react, they'd say that there wasn't anything wrong. I'd have to point myself or

place my hand over where the pseudocysts are before they would believe

me. One radiologist almost convinced my new GI that I had only one

pseudocyst, even though I had seen two on earlier films, and been treated for

two for a year and a half by another physician. I had to get all my CT films

from the other hospital and requested that my doctor read those before he

was convinced, because he trusted this radiologist and thought he was one of

the best at this other hospital. It turned out that the radiologist who claimed

there was only one pseudocyst hadn't filmed my pancreas completely,

because he was looking in the " conventional " transverse areas, instead of

where it really was. Apparently when my GI took my earlier films from my

previous hospital to him to compare with his own, the radiologist had to eat

some crow! Now my GI sends me to a yet different hospital with yet another

radiologist....who had no trouble whatsoever finding BOTH pseudocysts

because she took more thorough films.

This only goes to show that we need to be our own advocates when working

with doctors and other medical professionals in regard to the pancreas.

Every time I hear someone say that they had a CT-scan done and were told it

was " normal " , yet they're sitting here in pain and with obvious pancreas

problems......I wonder. What's happened to me only goes to show that

mistakes can be made by even the most highly respected professionals, and

sadly, they happen all the time. The last couple days recent messages about

the patient who died from needle puncture during a nerve block, and Laurie's

doctor who has suddenly reversed his diagnosis sadly reinforces this. Drastic

mistakes are made all the time and we need to be constantly vigilant about

our treatment and persistant in our struggle to find competent medical care.

If problems persist, we can't settle for a diagnosis of " nothing's wrong " , or

" it's

all in your head " or it's only IBS. That's where the need for a second, or even

a third, opinion is necessary. The pancreas is still a too mysterious an organ

for any one doctor to know all there is to know about it.

I'll get off my soapbox now. Thanks for your well wishes for 2004. I wish the

same for you. I've had a marvelous holiday with all my children and

grandchild, just returned from a two day trip to New York state to witness the

wedding of my dearest older brother, and have my daughter's wedding to

plan for this summer, so I have a lot of things to be grateful for. I am

starting

this year with joy and optimism and hope it continues well into the future

months ahead. I hope your health improves and you have much to look

forward to.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and should not be

substituted for consultation with a medical professional.

Henry wrote:

>It's interesting to me also how you had the diabetes onset before the

Chronic Pancreatitis diagnosis if I understood your story correctly. Again,

anything is possible with this organ.

[Guest guest]

Heidi,

I guess I should have read al the post before sending my last one...

(I was reading the board from top to bottom)

I get a lot of encouragement and information from this group, but

part of the reason I have been offline for the last 4 months is

because I also find it very depressing.. The truth hurts (although

not as much as PAINcreatitis )

Except for my first hospital stay in August, all my CT scans come

back negative, even though I am doubled over in pain.

My Pain Management Doctor was so sure that the Nerve Block would work

that he even used the word " cured " . I think part of his enthusiasm

and excitement was due to the fact that I was something different for

him... all his other patients have neck and back injuries, I was the

chance for him to do something different. His enthusiasm seem to

disappear when I had a Major Pain Episode only hours after the Nerve

Block.....

My original GI, after trying Enzyme Supplement, has thrown up his

hands, telling me to deal with the Specialist at Ciders....

At Ciders they kept telling me I " had " to have a drinking problem...

Then they admitted after my continual denials, that they would have

seen damage to the Pancreas if I did have an alcohol problem.

I was also told by the Doctor in October that he wanted to do another

ERCP on me, " when I was not experiencing pain " . When I called his

office three weeks later to say I had been pain free for 5 days, I

was told by the nurse that the Doctor now wanted to " observe " me for

a couple more months... ( I am in a cycle of 3 weeks of pain, then 3-

8 days of no pain, I have never been pain free for more than 8 days).

When I ended up in Ciders on December 21st with a Major Pain Attack,

the Doctor seemed very determined again, mainly due to the amounts of

Narcotics I am taking... (when I started them in August, I could not

function at all on half the dose I am on presently, which no longer

impair my driving or work abilities)...

He now is saying again, another ERCP when I am not in pain... of

course I can't get an appointment with him until February..

SO.......

Am I keeping a positive mental attitude, or am I in denial?

I have thought of the " S " word when I have been most discouraged, but

what kind of solution is that...

I am aware that this might never go away.. but my spouse does not

want to accept that... (nor do I really)...

Again I find this group to have the most factual and real life

information that I can get anywhere... but as I said before the truth

hurts...

Thanks for being there....

Koczera