Re: hurt, angry, and scared / catales

[Guest guest]

In a message dated 12/22/2002 8:28:26 PM US Eastern Standard Time,

catales108@... writes:

> >>>It is looking like they will be performing more surgery in the new year

> to use my small intestine to help enlarge my pancreatic duct..... Needless

> to say, I am hurt, angry, and scared that I will have to suffer through

> this and for it to only get worse.... I am lucky to have family members

> ...I always wondered what it would be like to suffer from an illness that

> doctors knew nothing about...now I am living the reality and I don't like

> it. <<<

Dear Catales,

Well, the disclaimer of the PAI is that the PAI does not give advice or

medical directions. But we do share our experience. Almost all of us have

experienced your pain, anger, frustration, fear. Several members have not had

very good experiences with the care they took. Several members took very

brave steps with a new and experimental surgery. Their outcomes vary, but for

the most part, they are experiencing less problems than before the surgery. I

see that Shirley has jumped in and availed her story for you.

In this post I want to share two lessons I learned that may have made my life

better, had I had this information.

One is that your health care provider may not tell you all the options

available to you and once they are past up, many are no longer options. For

example, many places are doing partial islet cell transplants with Distal and

Whipple.

The other is that this disease is progressive, deteriorating, debilitating,

and disabling. Many GI docs and surgeons want to make every attempt to

salvage your pancreas, but fail to tell you this. Every time you have an

attack, and once you are deemed chronic, your pancreas sustains continuous

damage to the organ itself (with calcifications and atrophy) and cellular

function (islet cell damage). Time is of the essence. While they may be

wanting to try this procedure and that procedure, surgery, etc., the clock is

ticking. The pancreas can only sustain so much trauma before it malfunctions

and before the caustic digestive enzymes begin autodigesting other organs or

nerves. They are focused on repairing a duct, but to get to what? What

condition is your pancreas in by then?

The mission of the PAI is to provide you with information and resources.

Knowledge is power and may well be the empowerment that will enable us to

make the right healthcare decisions at the right time. This is a very

important issue to me. When I was initially diagnosed my friend and I had

heard about pancreas transplants but didn't know what our options were and

couldn't find out any information. We asked our GI and our surgeon. They both

said that the hospital had done them and then quit because the fatality rate

was too high. We asked for more information but were basically told it wasn't

an option. They did say that some places were doing them but they were still

experimental. We thought that experimental meant you had to be in a study and

it wasn't an option for the public, and that insurance wouldn't pay for

experimental surgery. We dropped it. Thinking otherwise highly of the staff

we continued with the course of treatment outlined before us. That was based

on very calcified and atrophied pancreas and stenosed ducts. After two ERCP's

with stent placements, I had a Distal Pancreatectomy with Spleenectomy. That

was August 4, 1999. A year and a half later I found out that the Islet Cell

Transplant program was quite successful and many operations had been done in

1999. I would have been a prime candidate for the transplant. But lack of

knowledge left me at the mercy of the opinions of others. As a nurse I know

that it is their responsibility to inform the patient of all their options,

not just the ones done at their hospital or just the ones that they believe

in. They should have told me about Dr. Sutherland's program in MN. and left

that choice up to me. I was not given all my options. I had the Distal Panc.

and my potentially good healthy islets were disposed of in the trash can

instead of transplanted into my liver. I was not a Diabetic before surgery. I

immediately became a Diabetic after surgery.

Following surgery, I immediately returned to the level of pain I was in prior

to surgery and was referred to a pain management specialist. A slow learner,

I was impressed by this doctor's apparent knowledge of chronic pain and the

multiple disease processes and their interrelationship to multisystem organ

involvement. We addressed the issue of having a Total Pancreatectomy done, in

hopes it would ease my pain. At the time I was on IV Morphine and TPN. He

said that once the spinal nerve synapses were involved it wouldn't help the

pain. I went a year and a half believing that, without even pursuing a

consultation with Dr. Sutherland.

In the mean time, my condition was just in peril. I plan on pursuing this now

because I owe it to myself to gather as much data as possible. It is known

that people with Pancreatitis are at a higher risk for developing pancreatic

Cancer. It seems logical to me to remove my poor diseased pancreas (what's

left of it) so I can start trying to nurture my body with a healing

environment of good nutrition, vitamins, fluids, etc. To leave my pancreas in

would be like leaving in a rotting tooth. The decay eventually decays the

other teeth and involves the surrounding gums, etc. Any healing program

always starts with a good cleaning or detoxing. It seems like a logical

concept.

We are responsible for our healthcare decisions, and now we are responsible

for making sure we know what all our options are. Life is too short and I am

too sick to be bitter or angry, but It was a lesson, which I choose to use to

share with others, so that they will know that every decision you make is

critical and will affect the quality of your life, if not life itself. Don't

give that power to anyone else.

How wonderful to have such love and support from family. We have several

members who live in Nashville and other parts of TN. The TN State Chapter

Representative is Diane H. dhollis062@...dhollis062@... She goes to

Vanderbuilt,

also. We are all here to help in any way we can. Gosh we even have several

members from Australia, too!

I hope you can find a few moments of peace this week.

Karyn

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-