Re: my status: total pancreatectomy w/ islet cell autotransplant

[Guest guest]

Bert,

It's nice to hear from you. I am glad you are sitting there free of pain

right now. It does give you time to think. You wrote, " I wonder which is the

right way to go...... do I go on take all these risks to stop these attacks

that threaten to steal my life activities and career? or do I opt out of the

surgery because I am blessed to be free of chronic pancreatitis (for now) and

I do not live with intractable pain? "

No one can tell you what to do. I can certainly speak from expoerience and

tell you what the research tells us to date. Panceatitis is a progressive,

incurable disease. A Total Pancreatectomy and Islet Cell Transplant isn't a

cure. Without it however, everyone wityh Pancreatitis will eventually develop

Diabetes. Pancreatitis induced Diabetes is 100 times worse than Pancreatitis.

I can't speak about Diabetes alone.

The latest research says that 90% of the persons with Diabetes will develop

long term complications of kidney failure, heart diisease, blindess, and

stroke. Even with a stable A1C.

Before I had the Distal Pancreatectomy I asked the surgeon about having a

transplant. That was one month after I was diagnosed. I knew nothing. I was

told it was only experimental. Today I sit here in pain, brittle Diabetes,

poor vision and decreasing kidney function.

I am just one voice of this same story.

Don't be the next.

My mission in life is to not let anyone else have to suffer the way I do.

There is absolutely no reason why anyone should allow Pancreatitis to

progress to the point of total disability and physical deterioration. There

is not a cure, but there is an effective and permament treatment.

I hear people say all the time, " I am not bad enough yet. I am going to wait

until.... "

I believe that we are only given so many opportunities in life.

This is a no brainer. :-)

We'll be here for you to support you and love you through it.

Blessings,

Karyn , RN

Founder / Executive Director

http://www.pancassociation.org

PAI Home Office: Indianapolis, Indiana, USA

[Guest guest]

> I hear people say all the time, " I am not bad enough yet. I am

going to wait until.... "

Karyn , RN

Karyn,

This is what I kept saying to my husband, family and friends

during the last two years when they asked me why I didn't

consider this option. And when I mentioned it to my doctor, he

agreed with me, thus reinforcing the idea that you had wait until

there were no other options......

Until........suddenly it is too late.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

Karyn,

That is the reason I had the pancreatectomy after only 3 years of pancreatitis.

I was not

going to sit and wait for my pancreas to " Burn Out " . They would also say. " the

pain will

be less after a while. "

I don't know able anyone else but, each episode of pancreaitis was more painful

and I

didn't what to suffer just to see if it would get better on its own. My life

was spent in

a hospital hooked to a pain pump and a bag of TPN. The complication where

getting worse,

for septicemia to pleural effusion and I didn't want any more. I had 2 small

children at

home who needed a mother and I wanted to do what I could to be able to be there

for them as

they grow.

My kid where 3 yr. and 7 years. They are now 11 and 15; and I am here for

them.

Thank God everything has gone well and I am able to watch my family grow.

I feel sometimes we can not just sit back and wait for a cure or wait for the

Doctor so say

its OK. We have to empower ourselves to look for what we want out of live.

Being passive

it not away the way to get what we need in health care. We have to be proactive

and

involved in our care. We have to set goals and look at the options and try and

find the

best path to take to get to those Goals. I have been lucky that I have had

physicians that

have let me be involved in the decison making. Do not be afraid to ask!! Every

question

you have is worth asking, espically when it involves your LIFE.

gail