Re: New to this - JT

[Guest guest]

Hi JT,

As I read your letter, I couldn't help but be reminded of how much your letter

sounded like one of my first letters I wrote to this group almost four years

ago.

I was scared, too. I'd already had a few of those symptoms just as you have,

and there was absolutely no one to talk to or no one that I knew who even

knew what pancreatitis was. We were all feeling just as you are right now at

some earlier point in our lives.

The positive thing you have going for you right now is that you have this

whole group of people here that know so much about pancreatitis, and are so

willing to share their experiences and their knowledge, that you're already

one step ahead of the game. You will be able to learn things here that you'd

probably never learn through your doctor, as well as some practical

experience that even some of the best medical websites wouldn't be able to

teach you.

Another great thing about this website is that you can say whatever you want

to that's bothering you, or that interests you, or that you know nothing about,

and no one's going to turn your questions, or your expressions of fear or

insecurity, away.

The first bit of advice that I would like to offer is that I do think you should

go

ahead and get that CT-scan done. If you don't feel comfortable with the doctor

you've already seen, then find another specialist, but don't give up any

opportunities for further diagnostic processes devised to find out the real

cause for your first pancreatitis attack. You say you're not a regular drinker,

but do admit to some binging back in the spring, so it's quite likely that the

alcohol you consumed at that time may have had a contributing influence on

those first problems. Don't let that bother you, what matters the most is that

if

you can determine a cause, it will make it easier for you to receive appropriate

treatment in the future. It could be that there's blockage of some type that

brought that first attack on, or it could be an idiopathic cause, which means

that the doctor's won't know what caused it. Since there are several different

causes of pancreatitis, often it's very difficult for doctors to put their

finger on

the very one that applies to you.

The CT-scan is usually a very helpful diagnostic tool in determining the

present state of your pancreas. If you've been continuing to have even mild

digestive problems, that test should be able to show what's happened to your

pancreas since last spring, and it may be that there's something in there that

the doctors could correct that may make it easier for you in the future. This

is

just my personal opinion....I've had 17 CT-scans in the last three and a half

years, and the physicians have learned something new from each one. My

last one was in October at the Mayo Clinic in ville, Florida. I don't

know if going to the Mayo is an option for you, but if it is, I'd recommend it

highly. They have an excellent, highly trained staff of gastroenterologists

there, all who specialize in different pancreatic areas, and it's a great place

to

go if you really want to get to the bottom of your pancreatic problems.

We're here to listen to your questions and give you any help that we can. If

you check the " Database " files, you may find some other recommended

gastroenterologists for your area. Depending upon what part of Florida you're

from, it may not be that far for you to come up to ton, SC to the Medical

Center of South Carolina, which is about a 3 1/2 drive from ville.

They have some excellent gastroenterologists in their facility, too, that many

of

our members have seen and been treated by. Just let us know how we can

help you, and don't be a stranger among such a fine group of potential friends

here at the PAI.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

SE Regional Rep., PAI

http://pancassociation.org/anthology.htm#Heidi

Note: All comments or advice are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.

[Guest guest]

Dear Ms. Griffeth,

Thank you so much for replying to my post. It sounds as though you have a lot

of experience with pancreatitis. Until last spring, I had never even heard of

it.

I've been feeling physically ok the past couple of days, and I've never really

been in a lot pain at any one given time. I was certainly surprised to find my

lipase elevated (it has been going down, but very gradually). I am truly hoping

that I do not have a chronic problem, as I have so many hopes and aspirations

for the future that I don't want to give up.

I did some research on the internet about pancreatitis and about fell over in my

chair reading things like " mortality rate is 45% within 20 years " or " 50% within

seven years " (depending on the study). I really don't want to die...I'm only

23.

It was Mark Armstrong in Oregon that led me to this group. I talked to him on

the phone last week and he convinced me that whatever I have probably won't kill

me. He even gave some hope that I may be able to go back to the military, since

he is a vet himself and spent four years on active duty with this condition.

I'm hoping for the best.

I don't like or trust the VA doctor that I'm seeing, but I don't have medical

insurance to go anywhere else. I am a university student and when the semester

starts I'll see what kinds of student health insurance programs are available.

I am debating as to whether to go to my Jan CT scan appt at the VA.

I live just north of Orlando, which is about two hours from ville and

maybe five and a half from ton. I went to boot camp in South Carolina,

at Parris Island.

Again, thank you for writing me back. Merry Christmas.

- JT

[Guest guest]

Dear J.T.,

Thanks for your Christmas message. It was a meaningful day with part of my

family here. The rest will arrive Sunday and then we will celebrate once

again, sort of an ongoing holiday, with our large family dinner together

Sunday night.

I'm well familiar with Parris Island, we lived in Beaufort for four years, and

now

don't live far, just across the bridge and the river in Bluffton, SC. I know

you

didn't actually get to see much of Beaufort during your time at

P.I.....lol...they

had you busy doing things other than sight seeing, didn't they? I understand

your passion for the military, my husband and both sons were (are) USAF, I

spent much of my adult life living on a military base, and know that our men

and women in uniform are a select breed and devoted to their mission.

There's no reason to give up hope in getting back into your military career,

yet.

You said you son't have confidence in your VA doctor, which really is too bad,

yet I still maintain that an updated scan of your pancreas would be beneficial,

since it should give you a better picture, (no pun intended), of what kind of

shape your pancreas is in at this time. Plus, if the VA does it, it's a free

procedure, whereas you'd pay anywhere from $1,500 to $5,500 to have it

done on a civilian status. Each of my 17 CT-scans have cost over $4,800

apiece at our local hospitals. Although our insurance does cover it, this

charge does count toward our overall maximum life coverage, and that can

add up quicker than you think, when you throw in a couple hospitalizations or

more each year.

In this regard, it would be good to have an updated film done, but you must do

what you feel is best for yourself and what you're comfortable with. You need

to remember that those mortality rates aren't that accurate and they do reflect

the patients that have a lot of problems and who end up having multiple organ

failure. I believe there's more chance of your death being caused by old age

or other health problems, than it will be by CP. We've got some members

here who've had CP since childhood who are still going strong in their 20's,

30's and mid-50's. I know that those statistics can be frightening, I looked

them up myself when I was first diagnosed, mainly because I'd never even

heard of pancreatitis and it seemed to me then to be such a foreign and

frightening thing to have. I found those negative numbers and had myself

wound into a tailspin pretty quick, depressing both myself and my husband.

Then I found this group and kept reading about all these people who had had

CP for years and years, and decided that my attitude was what needed the

most adjustment, and that was one thing I DID have control over, so I chose to

stop thinking and worrying about negative things and concentrate on learning

about the positive things I could do, and the best ways I could educate myself

about the disease, so that I wouldn't end up being my own worst enemy. I do

believe that having the right attitude can help you go far and stay as well as

possible.

I'm glad you personally spoke with Mark....he's an awesome man and and an

excellent mentor in this type of situation, especially because of his previous

years in the military and his experience of going through what he did with his

CP while he was still on active duty. You were fortunate to have found him,

and I'm glad that he directed you to the group, too, so that you could learn

more from the rest of the members current posts and the archives. There's

some great information here, just waiting for anyone who's interested.

Keep posting with any questions, J.T. , you can ask just about anything here

and get some kind of informative answer. I hope your Christmas day was a

merry one and that you're able to enjoy the rest of the holidays without any

pain or difficulties.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

SE Regional Rep., PAI

http://pancassociation.org/anthology.htm#Heidi

Note: All comments or advice are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.