I'm new here

[Guest guest]

Welcome to this board!

I am sorry you ahd to come to this board for obvious reasons but you

have come to the right place. Everyone of us has been where you are.

I don't know what your doctor ment about you had " fried " your

pancreas, but I can tell you that if your enzymes are elevated that

is a sign it is still working. When it finally quits working for the

most part the enzymes dont' budge. Because yours was caused by your

gallbladder (I assumed they took it or are going to take it out),

there is a very good chance you can get better.

As far as the PICC line and staph. That is very common. It is also

very miserable and dangerous to have a line infection. But that can

also be cleared up. An amylase of 1500 is very high but I an tell

you the worst one I had was almost 30,000, not 3000 but 30,000!

Obviously I am still here!

Unfortunately, with this disease about the only thing you can do is

rest the pancreas (TPN), pain medicine, etc. etc. If things are bad

enough, they can take it out. There is a lady in this group who had

hers out and is a walking talking miracle. I believe her name is

Shirley.

Good luck and I hope this helps.

Kaye Fortenberry

kfortenb@...

North Carolina Chapter Representative

Pancreatitis Association International

- In pancreatitis@y..., emeryc@m... wrote:

> Hello. I had an acute attack of pancreatitis on April 30th. After

> blood work and a CT it was found that I was full of gallstones and

> one had blocked my pancreatic duct. My pancreas was horribly

> inflammed. My lase's were over 1500. I was in the hospital for

over

> two weeks. First to stablize so my gallbladder could be removed

and

> then to let my pancreas rest. I was fed through a PIC line. I

went

> home with the the PIC line on TPN but unfortunately came back in

two

> weeks later was Staph.

>

> Anyway, that's the history. It's so good to know that I'm not

> imaging the feeling that someone has kicked me in the stomach, the

> sudden nausea that overcomes me and the diarrhea. As I heal, will

> this improve ... go away ... or do I have it forever. My doctor

told

> me I had fried my pancreas. Will it ever work again?

>

> Anybody else out there with similar problems.

>

> Thanks, I'm so glad I found all of you.

[Guest guest]

It could do either. Some pancreas' recover, some don't. Keep in contact

with your doctor if the symptoms continue. You may eventually develop

chronic pancreatitis. As many of us know here, the pancreas doesnt take

well to mistreatment of any kind. I call it the touch-me-not organ

because it's so picky. I've got chronic pancreatitis due to a pancreatic

divisum (divided pancreatic duct). Plus the existing ducts are too small

and too close together to make the situation worse. So I've ended up

having between 15-20 (I lost exact count after #15) cases of acute

pancreatitis and it is now chronic. It took them a long time to diagnose

the birth defect and that it had gone chronic.

And yeah, it does feel like you've been kicked in the stomach. I usually

have constipation, not diahhrea with my attacks until the last one. then

I got the diahhrea. Ugh. My doctor has me on pain meds, nausea meds and

when i hurt real bad, I go on liquid diets. The daily pain has really

only been in the past 7 months when I had my last attack in January.

Till then, I only hurt when I had an acute attack. I also take

pancreatic enzymes (Cotazym).

There are several on the group who have had gallbladder problems. They

thought at first that was my problem, or at least, they weren't fully

convinced it didn't make it worse till they removed it while they tried

to repair and widen my ducts. Gave me about 5 years without attacks and

then they started up again. Now I get acute attacks about 1 a year. I

have a much slower progression of chronic pancreatitis than a lot of

others on this group.

Kimber

--

Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International

[Guest guest]

I am very furtunate, in that my GI i very good about not letting me stay in

pain. He doesn't hand out prescriptions like their lolipops but he'll give me

a week or two of meds and have me check in, when I do we'll go over the

situation and he'll adjust what I need(stronger weeker, the same).

Some of the things I try to do to keep from being labled a drug

seeker is this. I go to my GI for pain meds, except in an emergency. If I run

short or need something stronger and can't get my GI, I go to my Family

doctor and ask for only enough to get me through till I can see my GI( once

he wrote for 3 pills) . If I go to the ER, I don't demand I clearly let them

know that I know what's going on and what I need. New residents often don't

understand about the fact that blood levals can be low, explain it to them.

Any time I get pills from anywhere other than my GI, I contact him

immediately to let him know exactly what happened. I always go to the same

ER, that way it doesn't look like your going form one to the other to avoid

detection. This way when the recors catch up to each other, which they will,

it doesn't give the appearance that your going from place to place looking

for drugs. Lastly I always tell the doctors that I'm taking T-3 or Perc and

that it's just not working, that I want to take the least stongest stuff that

I can. At this point the doctors are convincing me to take stronger

narcotics.

When I go to the ER, I make sure that I'm showed, shaved and dressed not to

sloopy, or not to fancy. If you look like a drug seeker they will treat you

like one. I realize that these last couple of lines sound manipulative and

dishonest. I don't try to get drugs I don't need, but if your in pain there

is no reason for that. We all no that the ER is filled with future

Non-doctors as well as future doctors and we can't be at the mercy of their

God complex. I have never been refused the medication I need. I hope I

haven't offened anyone and I don't suggest that you be dishonest with your

doctors. Lastly I would keep a record of what you have been prescribed and

dates to show that your not taking more than prescribed. True drug addicts

can't take medication on schedule, they take as much as they can and worry

about it later. This might help if you are accused.

Thanks,

Rob

[Guest guest]

My son, Christian, 2, was just diagnosed with a Complex I Deficiency

after 15 weeks of waiting for the results on test that Dr. Shoffner

did in Atlanta. Christian was born with catartacts that was full

grown at age 2 mo and we were immediately sent to Duke University,

which is where he had his surgeries. He went through a series of

test to find out why this happened and of course nothing was ever

possitive. We were sent to a genetic doctor at Duke to start that

process. After all the family history was told over and over again,

they came to the conclusion that he might have a mito-disorder. He

had a blood test (which is almost always a waste of time and money)

and it was negative. We were then told he would need a muscle biopsy

at when he turned 2 and to come back then unless anything out of the

ordinary started happening.

What made them think he may have a mito is the history. My mother

was born with cataracts and died of cardiomyopathy at age 45 (1998),

my grandmother and her 2 sisters are blind with retinitis pigmentosa

and my grandmother and one of the blind sisters are diabetic. During

my first pregnancy with my daughter I had extremely high blood

sugar. I, along with several cousins suffer from sever migraines. I

too, have cataracts as well as my blind grandmother. I'm sure there

are other things, but my mind is bogged down with all of this.

As far as Christian, he was born at 39 weeks with mild jaundice and

was hospitalized at age 2 weeks with viral meningitis. At age 6

months he got pneumonia and now has reactive airway disease, and re

requires a lot of sleep. He is legally blind and does love his

glasses. He has developed normally and right on target with his big

sister, which has shown no signs of this disorder. He has a visual

aid teacher who works with him 2 times a month. They are a little

concerned with his speach, but me being his mother, I know everything

he is saying.

I am not worried about this because I have so much faith in God. I

know God put him here for a purpose in my life as well as other

people. God has blessed me with him so I will raise him and give him

the life as God would want him to have, so I can in turn with all my

abilities, give God his child back.

Tuesday, 29 October 2002, we are scheduled to sit down with his

genetic doctors at Duke to tell us exactly what we have facing us,

what to look for. We do know he has to take 11 different vitamins

and as my genetic counselor would say a " mito cocktail " . We have to

make some adjustments to his diet as well.

For us now, it is hard to comprehend that he could be living with

something when he seems so full of life and energy.

I am so thankful that i have found this web site and to be able to

communicate with people who are dealing with this disorder. If

anyone wants to share anything that could be informing or encouraging

to us, please e-mail me. Thank

you....aloetteis4u@...;tina71074@...;clangley@...

g

[Guest guest]

Hi there...

didn't catch your name, but welcome to the group...everyone here is really informative and the real people out in the trenches!

I unfortunately don't know much about your sons presentation but there will be someone on her who can relate. You can take ten kids with complex I and put them in the same room and they would look completely different, so that makes it hard for parents and clinicians to figure out, so don't worry. Basically you just treat the symptoms. Sounds like you have a couple of good doctors and Shoffner is the best diagnostician out there.

We were diagnosed by him after seeing him at the end of March. My son, age 6...he has Complex I and IV which transport problems in Complexes I+III and II+III.

welcome to th e group again...

deb

[Guest guest]

I realized after I signed the message board that I didn't tell my

name. I'm Tina Langley from Greenville, NC. I want to thank you for

replying back and I'm looking forward to meeting other people who can

help me as well as others understand this better.

> Hi there...

>

> didn't catch your name, but welcome to the group...everyone here is

really

> informative and the real people out in the trenches!

>

> I unfortunately don't know much about your sons presentation but

there will

> be someone on her who can relate. You can take ten kids with

complex I and

> put them in the same room and they would look completely different,

so that

> makes it hard for parents and clinicians to figure out, so don't

worry.

> Basically you just treat the symptoms. Sounds like you have a

couple of good

> doctors and Shoffner is the best diagnostician out there.

>

> We were diagnosed by him after seeing him at the end of March. My

son,

> age 6...he has Complex I and IV which transport problems in

Complexes

> I+III and II+III.

>

> welcome to th e group again...

>

> deb

[Guest guest]

Hi Tina

Welcome aboard. Unfortunately it is going to be a very bumpy ride from

what I can gather/

I have only been with this group since sometime in August and I am just

know getting brave enough to post. I have a 14 mos. old granddaughter

with mito, still don't know which kind. The folks that are in this

group are very knowledgable and very supportive of one another.

Good luck on your " journey " , and remember, you are not alone.

God be with you,

Kathy

Grandma to Audrey, 14 mos

[Guest guest]

Welcome Tina!

I have a 12 yr old daughter who was diagnosed by Dr. Shoffner in Atlanta.

She has multi symptom involvment. She has not been in school for two years now and recieves homebound services on Fridays for socialization and life skills, we no longer set academic goals.

I look forward to getting to know you more.

Horsley

leehorsley@...

Re: Re: I'm new here

Hi TinaWelcome aboard. Unfortunately it is going to be a very bumpy ride fromwhat I can gather/I have only been with this group since sometime in August and I am justknow getting brave enough to post. I have a 14 mos. old granddaughterwith mito, still don't know which kind. The folks that are in thisgroup are very knowledgable and very supportive of one another. Good luck on your "journey", and remember, you are not alone.God be with you,KathyGrandma to Audrey, 14 mosPlease contact mito-owner with any problems or questions.