After a desperate search for an online pancreatitis support group...

[Guest guest]

Here I am! A short intro...

My husband Doug collapsed January 16th of this year on our way to

church. Within 24 hours he was in ICU on life support and not

expected to make it--acute pancreatitis and subsequent pulmonary

failure. His only symptom beforehand was a slight stomach ache the

night before. There was no indication of gallbladder disease (but

they took it out in the second surgery because a cyst had grown into

it), he's a teetotaller so alchohol wasn't the cause, no meds on the

list of possible causes--they just call it " cryptogentic " . Well, four

months and two surgeries later, necrosis, pseudocysts, infection...

he's still here! They aren't sure how much pancreas is left-- " very

little " is the best I can get out of the surgeon. Our hospitalist

calls Doug a miracle, or as he says " It isn't the worst case of

pancreatitis I've ever seen, just he worst case I've ever seen anyone

survive. " Doug's still hospitalized, but we're hoping he'll be home

soon.

I'm very nervous about Doug coming home. Checking blood sugar (he'll

be on Lantis insulin and a sliding scale four times a day), he is just

beginning to be mobile again after his second surgery (walking short

distances with a walker), when will he ever eat food again (he has an

enteral feeding tube), can life return to normal? He's 34, we have a

1 year old and a three year old. He is a writer and a stay at home

dad, but we've had to hire a nanny (which we can ill afford), and it

looks unlikely he'll be able to chase and lift two small boys anytime

soon. He misses them so much--our one year old has gone from infant

to toddler in the time daddy has been in the hospital.

I guess I'm just looking for a place where people actually know what

pancreatitis is, where someone understands how severe and life

threatening his condition was even though it ISN'T cancer. Trust my

husband to get the weird rare disease--he always has to be unique!

I'm just exhausted from four months of hospital duty, I spend almost

every weekday with him in the hospital. I also work full time and

have two little ones so I'm plain old tired--and I can't sleep (it's

3am now)because of all the stress. General care-giver worries!

Thanks all, I enjoyed reading old posts and getting a feel for the

group. Sorry this was so long! --Kay

[Guest guest]

Kay,

How well I understand what you are feeling. My

husband's pancreas is in horrible shape and he has

lived through many things they say he should not have.

He has been the full time caregiver for our 4 year

old (we are older parents, 51 and 44). My husband

does not drink either and they called his idopathic,

in otherwords, they have no idea why he got it. After

his hospital stays I have to find other caregivers for

her for about 4 weeks until he regains strength. I

have had to support our family for the past 6 years

because of this illness, I understand the word TIRED.

All I can say is be thankful for each day you have him

with you. Never forget that's it's okay for you to

rest when you can. Stay close to him and to the Lord

and you'll make it. It won't be easy, but you'll make

it. Hang in there, if you need anything, just drop me

an email.

Get him good doctors, that is very important.

God Bless,

Becky

__________________________________________________

[Guest guest]

Kay,

don't worry about long posts, we all do that from time to time. I'm glad

you found the group and all of us understand how bad and debilitating

this disease is, so we're happy to help in any way that we can. We have

several other caregivers on this groups, soyou are not alone here.

WEll, I got to go, I just wanted to welcom you and Doug to this group.

It would be nice if sometime Doug could come on the list himself too,

when he is able to.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Kay,

Your nervousness and concerns are totally understandable.....both you and

your husband have experienced some life altering changes during these past

many months, and it's not over yet. I'm glad that you found us, though,

because now you, and your husband, will have someone that understands to

talk to, and share your fears and questions with.

I'm sure that you've already found that there aren't very many people on the

outside who really know about this disease and what Doug's been going

through. And the ones that do, (doctor's, perhaps?), just don't have the time

or the inclination to share too much on a personal level, making your task to

learn and acclimate yourself just that much harder. That's what we're here

for!

Hopefully, once Doug is home and feeling more at ease, he'll be able to join

in the posts and share his questions with us. Right now, coming home and

having to learn the ropes of diabetes, with blood glucose testing, injecting

insulin, learning what he can eat and how much and when.....he's going to be

on an accelerated learning curve and you're going to have even more

responsibilities as his care giver helping him to adjust. Just figuring out

chronic pancreatitis is a daunting process in itself, but once you throw IDDM

into the mix, it's like a puzzle with 10,000 pieces with no picture to follow!!

Briefly, I had CP almost 2 years before my pancreas burned out and I

became an insulin dependent brittle diabetic. With plenty of experience with

both, I'm sure that there's much that I could do to try to help Doug, as well as

many other wonderful people here can, and will, do. All you have to do is

ask.

If he has questions about his CP or his diabetes, we've got the people here

who can try to answer them, or find the answers for him. I take Lantus insulin

myself, and am very happy with it. They'll probably give Doug something like

Humalog or Novalog to use for his meals, since the Lantus is only a baseline,

(long acting) insulin, to cover a 24 hour period. Hopefully, Doug will get an

appointment with an Endocrinologist who will set him up with a CDNE,

(Certified Diabetic Nurse Educator), who will fully explain the dosing process

and what kind of blood glucose numbers he'll need to be aiming for. If this

doesn't happen, I, or one of the other diabetic members can help, but he

really needs this type of education established by a professional.

There's a lot to learn, but don't let this alarm you. We can help both of you

every step of the way, and want you to feel comfortable and free to ask any

kind of questions that you're concerned with. All you need to do is to

begin.....

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

www.health.groups.yahoo.com/group/pancreatitis/

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

substituted for professional medical consultation.